| Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Well I certainly hope that the old saying: Third time is the Charm holds true for me. My stubborn cancer is back after the IMRT & CyberKnife one more time. The pathology report from my biopsy is in [quote] left lateral wall/ tonsil fossa -fragments of In-situ and invasive, moderately differentiated SCC. several levels were examined P16 is strongly positive [/quote] On the positive side, Dr Google says: [quote]Thus HPV positive tumours are characterized by high expression of p16.... Moreover, since transcription of the E7 oncogene is required for p16.. upregulation, it has been suggested that carcinomas overexpressing p16.. represent those tumours in which HPV has been involved in the carcinogenic process [31]. [/quote] I am getting a MRI at 7:30 am this Friday and see my ENT this Tuesday. What will be done depends on what the MRI shows. I'm still in basic shock/denial so doing okay. My wife however is really crushed. She took verbatim notes all during my TX and the last time around, and each of the doctors used the word "catastrophic" to describe what a third occurence would be. She's afraid it was an euphemism for terminal. It did not comfort her that my ENT is already contacting the CCC to see if they want to try a third round of radiation after surgery. Boy, this forum is getting pretty depressing. Christine and I used to laugh about how both of used to refrain from looking at this forum for fear of "jinxing" ourselves back before we joined the club. Any suggestions from you caregivers out there on what I can do to help ease my wife's pain& worry?. I'm being positive and stressing that I'm okay with losing the rest of my tongue, speech whatever but that's not working too well. Charm
Last edited by Charm2017; 08-23-2012 06:16 AM. Reason: add P16 expo
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | NNNOOOOOO!!!!!!!
Charm I am sooooo sorry!!!!!! I know what you are going thru. I was in complete shock about my 3rd round of OC. I had been feeling really great and couldnt believe I was sick again.
I know you can get thru this. If I can do it, so can you. Im such a wimp compared to how tough you are. You are so lucky to have Bev who pushed you to get your butt to the doctor. Please keep us posted.
Good luck buddy!!!!
(((HUGS)))
Last edited by ChristineB; 08-23-2012 06:26 AM.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | Now after my initial shock, I am making another post with some helpful advice.
You both need to think on the positive side. I know, I always say that but it really is helpful. Getting a diagnosis of oral cancer for a 3rd time is NOT automatically a death sentence (which is what I had always believed). You will get thru this!!!! I was a Stage IV my third round and I am very fortunate to still be here. You both are smarter this time around. You know the medical jargon and all about cancer centers. You already have a great team of doctors lined up and know where to go for a second opinion. This round could be easier or harder depending upon what the treatment plan will be. Surgery is something that isnt always as bad as rads.
Last edited by ChristineB; 08-23-2012 06:33 AM.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | :(((((((( this bites.. And coming here is scary as hell! But we all have individual reasons for doing it - mostly it's to give back and help. I'm sorry it's back. you're living my nightmare, and everyone else out there who's had H&N ca. It's bizarre and terrifying who it effects and who it doesn't, who gets a recurrence or who doesn't, there's no rhyme or reason to it. The radiation dr. Looked at me and said if you hit three years free then it's highly unlikely it will come back - five years it's almost unheard of... I wanted to tell him BS I know people who've had that happen. Anyway there is a woman on my facebook page (there are three H&N cancer pages I belong to) she's had 5 recurrences and radiation each time. You can and will get through this, and as with misskate you know a full and rich life after a total glossectomy is very possible. we stand here with you as a support, and friend as you have for us. Tell your wife we're here for her too. Hugs to you both.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Ohhhhh Charm and Bev - I have been thinking sooo much of the two of you!!! You are both strong and fighters and you can beat this! I've made up my mind to just concentrate on your quote about the positive side and I hope that you do too. Just thinking the good thoughts brings HOPE which is something you deserve BIG time! Keep us updated.
Bev - I'm sure all the caregivers here are with you in spirit and heart. I'm so glad Charm has you. Give him lots of hugs for us. You are one very special lady!!
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Brother,
It is not very often that I am at a loss for words but I've been pretty much in shock since learning about your recurrence. Shock isn't a bad thing however, it often allows us to disconnect from emotions to take decisive action and deal with situations at hand that those emotions would complicate.
As I consider you a mentor, I doubt I'd have any words of wisdom to help...so I'll share a passage I think you'll appreciate. Ecclesiastes 3:1-8.
"There is a time for everything, and a season for every activity under the heavens: 2 a time to be born and a time to die, a time to plant and a time to uproot, 3 a time to kill and a time to heal, a time to tear down and a time to build, 4 a time to weep and a time to laugh, a time to mourn and a time to dance, 5 a time to scatter stones and a time to gather them, a time to embrace and a time to refrain from embracing, 6 a time to search and a time to give up, a time to keep and a time to throw away, 7 a time to tear and a time to mend, a time to be silent and a time to speak, 8 a time to love and a time to hate, a time for war and a time for peace.
ignore the second part of 3:6, there's never a time for that.
Peace and Love
Eric
Last edited by EricS; 08-23-2012 07:44 AM. Reason: always spelling
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Charm - I am so sorry to hear your news. You asked "Any suggestions from you caregivers out there on what I can do to help ease my wife's pain& worry?" I find that it's also impossible to NOT think about things ... but that it is possible to replace what one is thinking about. A project that you could work on together might be useful (besides your next treatment, which, while a project you will be doing together, it not likely to be fun). If you are doing something together that makes you both happy doesn't make the shadows go away - but they remind you that the sun is still there. There is a song that refers to the happy, carefree days of youth. Youth is long-gone, carefree along with it - but a quiet happiness and peace is possible. I find poetry to be helpful in coming thru the long tunnel. My very best wishes to you both. Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2011 Posts: 596 | Dear Charm,
I am sick to my stomach reading this. I wish I had some great words of wisdom to comfort you and Bev. I'm not sure anybody can be prepared for the news you both have just received and I am so very sorry that you are facing a 3rd round with the beast. I think Christine's posts are most helpful because she's been where you are now.
I have high anxiety at baseline, so I have to make sure that I am good at staying on time with my meds (small dose of clonazepam, 3x per day). Already having in my system this time around has helped a lot, IMO. At least I wasn't having my total body tremble/shake like I was having some sort of seizure. Also, maybe I was more calm because deep down, I expected mine to happen. I know that's not positive thinking, but it was my intuition.
Now, I don't know Bev at all, but maybe she would benefit from seeking counseling herself. My cancer center has social workers and oncology counselors who are available to patients and their family at no extra cost.
As for you, my friend, I hope for the best for you to put this beast to bed for good.
(((Hugs))) Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11) SCC L oral tongue (no risk factors) L partial gloss/MND 3/28/11 @ 25 wks preg T1-2N0M0; no rads/chemo Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-) Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx. Various scans since rx ended are NED! Part of genetic study for rare cancers @ MGH. 44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2009 Posts: 329 | Charm,
I'm shocked and sorry to hear this news.
I was a caregiver for 18 months for my husband. I'm sitting here thinking what advice I can give to your wife. The only thing that comes to mind is after the shock stay calm, do what you have to do to get through this dreadful disease. We were upset every time it came back we both did what we had to do to help each other. We were each others ROCK.
I wish the forum was here when my husband was sick it would have been a great help. She might want to think about coming to the forum I'm sure it will help her. She'll find plenty of support here.
I wish you both the best you'll beat this again.
Take care, Connie
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2. Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.
CT Scan 9/11 clean, CT Scan 9/12 clean
Moffitt Cancer Center in Tampa, FL. A+.
My hometown Lockport, NY.
| | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | Charm: There's absolutely nothing I can say that hasn't already been said by our wonder Forum family. I always looked up to you and your posts with wonderful advice for anyone seeking it, including me, and that hasn't changed. Others, including me, will seek advice from you now more than ever, because we never know when the Beast will happen to us. I just want you and Bev to know you will be in my prayers, every night, for success in beating this again. Others have, as you know, and so can you. Hugs from julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | Dear Charm, I am sitting here holding in this gut wrenching scream because I don't want to scare our kids. I'm so sorry. I live in daily worry that this will happen to us, only it would only be round 2. I try to think of how I would handle things and I think my biggest fear is what it would do to Kevin. With that being said, maybe Bev just needs to know where you are with this. I fear that Kevin would give up. I wonder if I should let him give up. I think about the fact that it is his body and he has to go through it and will he? I don't know. Just maybe some real frank talk with Bev. Lots of hugs and quality time snuggling. Course, touch is my gift of love and NOT Kevin's, so if the 2 of you are that way too, that may not work! You are right about this site. It is a double edged sword for sure. Blessings Charm. You are loved, Kathy
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | Joined: May 2012 Posts: 114 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2012 Posts: 114 | I'm so sorry to hear about your recurrence It's not fair that anyone has to face this diagnosis even once, nevermind twice or three times! I feel so much for you and for your wife. It is so scary when things are out of your control. All I can offer for advice is to hold on to hope. Without hope you have nothing. Hang on to eachother, set a game plan for you to both focus on together, and take it one day at a time. Thinking of you and your wife and sending healing positive thoughts your way.
Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12 | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Everyone Thanks for the support and good ideas. Bev & I did have long talks about this trying to see if this third time around could be smoother than the other two. It's going to be a darker journey than before, but I'm confident we will emerge into the light again. I appreciate your comments. The problem of course is that if there was a magic answer to my question, you gals would undoubtedly have already shared it plus, you would have already been on Oprah and giving private sessions to Michael Douglas' and Roger Ebert' wives. I do notice that we don't have many patient / caregiver couples on the forum, it's almost always one or the other. In our case, Bev prefers human not computer contact and has never been a big fan of cyberspace, preferring to make her fabric art or chat with customers at the cooperative gallery at the Torpedo Factory rather than stare into pixels. Rest assured that I never give up and never give in. Not fighting to win is an alien concept to me. I'm staying positive, and I'm in great company in this forum. While the recurrence club has a nasty initiation rite, it's members are inspirational. (I teased Kerri in a PM about being competitive and not letting her have all the bad news in this forum and she laughed - she has spirit) Only you understand what Bev and I are going through, so your posts mean quite a lot Keep the Faith Charm
Last edited by Charm2017; 08-23-2012 05:20 PM. Reason: typos
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | Charm,
I�m just shocked and angry that you have to face this beast once again. As a member of the recurrence club I know how hard it was to face it a 2nd time, let alone a 3rd time. You are steps ahead of many since you�re already an OCF member and have our support to help you and Bev get through this once again. As someone else said, knowledge is power, and as you well know OCF is the best place to get that knowledge.
Best wishes to you both.
((((HUGS))))
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Charm - It's so encouraging to hear that you are staying positive and keeping in touch with us here. There is every reason to hope that this next journey could go even better than expected for you and Bev. There have been so many positive thoughts and suggestions given and that's what I'm hanging on to for you. Bev has already been such a tremendous care giver, and knowing that she has the human contact you mentioned is really a good thing. It will help ease the worrisome moments that may come and be a reprieve from the worry and "what ifs". Sending prayers, positive vibes and imagery, crossing everything that can be crossed for everything to go the best way possible!
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Dec 2010 Posts: 291 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Dec 2010 Posts: 291 | Charm, So sorry about this. I wish it had not happened. I admire your considerable strength, both physical and mental. So glad to read your statement about not giving up the fight. Seeing yourself as a basically healthy person despite outward appearances is an important factor in winning it. Anne
SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA GIST tumor sarcoma, removed 9/2011, no chemo needed Clear on both counts as of Fall, 2021
| | | | Joined: Apr 2012 Posts: 47 "OCF across the pond" Contributing Member (25+ posts) | "OCF across the pond" Contributing Member (25+ posts) Joined: Apr 2012 Posts: 47 | Hey Charm I wish I never opened this thread, I am just getting a feel for your humour. Your own signature is the best be strong and couragous. You must have some of the routines down now might help?I know this my 1st journey not knowing what was round the corner was not always a bad thing. (shit,shit shit) Charm I wish you and your missus all the best and want to hear your caustic posts. Love CubanKeith
21st March squall cells.Endescopy not oesophagus, ENT .April endo nose CAT MRI general Panendoscopy prim-HPV 16 base of left tongue one node-stage 2.23rd of May.14/5/12 9 teeth out.8/6/12 PICC inserted.11/6/12 1st Chemos 25/6/12 2nd Chemo Cisplatin5FU:27/6/12 PEG23/8/12 Radiation finished 1/9/12.
| | | | Joined: Jul 2012 Posts: 61 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jul 2012 Posts: 61 | Hello Charm,
I am fairly new here but in my short time you are one of many who stand out for the knowledge, help, support, encouragement humor and positive attitudes etc. that you pass along to everyone. You have definately lifted my spirits and caused me to have optomistic thoughts.
As you move forward I look forward to your strengths pulling you through and your breaking away from this third occurance that has become an unfortunate setback.
2010 sore throat Jan 2011 ENT no prob Jun CAT no prob July PET July biop pos July PEG
HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011. Jan 2012 PET neg June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos July MRI. July bio pos | | | | Joined: Apr 2011 Posts: 267 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Apr 2011 Posts: 267 | Oh, Charm. I am so sorry to hear this. Your posts have been so helpful to me and I'm sure to countless others. I really appreciate the wry, tough way you address challenges but I've also been deeply moved by your kindness and empathy. You will fight this and you will beat it because that's what you do.
I wish I had some wonderfully wise advice to help your wife. For what it's worth, I think what will help the most is having a plan in place and getting back in the fight.
Keep the faith, Charm. You have an awful lot of people in your corner.
Tracy - 33 at diagnosis SCC right ventral tongue Dx 4/11. T1N2M0 1st resection 5/11. Bilateral neck dissection: 2 pos nodes 2nd resection w/graft 6/11. Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11. 3 month MRI and PET/CT all clear. 6, 9, 12 and 24 month post treatment MRIs all clear. | | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2011 Posts: 596 | Like I said earlier, Charm..."We'll cross the finish line together!" Even if one of us has to kick the other's ass or drag it across (and I have a big ass), we'll do it holding hands . Love, Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11) SCC L oral tongue (no risk factors) L partial gloss/MND 3/28/11 @ 25 wks preg T1-2N0M0; no rads/chemo Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-) Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx. Various scans since rx ended are NED! Part of genetic study for rare cancers @ MGH. 44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Well this news sucks!! I thought Christine wanted to keep the membership numbers down in her "Third time is a Charm Club" (of course named in your honour) but I am sure she will let you join!
There were lots of good words in that biopsy report - things like in-situ. You will know so much more after the MRI. Until then you really can't evaluate options. Stay the course, try to stay calm, and spend all the time you can hugging that wonderful wife of yours. One day I said how much I wanted to meet you and what I got back was them telling me how wonderful SHE is!!! Too funny.
Some of my favorite posts over the years were those you made IMMEDIATELY after your last surgery. They made no sense whatsoever, which of course is not like you!
There are several of us who are not here to prove the odds. - OUR job is to make them recalculate those odds. You are one of those. We have taken hits before, this is is no different. Marshall all your troops - mental physical and spiritual - we at OCF are digging in for the fight.
Hugs
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Dear Charm, What can I say. This is gut wrenching. Like many others I have looked up to you and appreciated your wisdom, empathy , diligence and your humour. Yes , these are fighting times and you are a fighter. This is a battle that can be done. You are already armed, go fight. As a caregiver and a member of the reoccurrance club I do know the utter devastation that Bev ( and You ) is feeling right now. She I'm sure just wants to fight for her Man and keep you safe. For myself, I found that once we knew exactly what we were facing and how we were going to treat it I was able to be much calmer. I stood right beside Kris and fought as hard as I could for him, Wife, Lover, Best Friend, Advocate, Cajoler, Encourager and Nurse. I definitely identify with her terror and fears. Sleeping pills helped me a lot too otherwise my mind just spiralled.Once treatment started I knew we could do the fight. Should you need to lose your tongue, I'm here. Been there, done that. Go fight Warrior, Tammy - and Kris
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Oct 2011 Posts: 67 "OCF Canuck" Supporting Member (50+ posts) | "OCF Canuck" Supporting Member (50+ posts) Joined: Oct 2011 Posts: 67 | I wish you "Strength in Body, Peace in Mind, Love in Heart". You are such an inspiration. Full of great advice, humor, intelligence etc. I could go on and on. <3 and good luck.
Pain late 2009. Dx as change in altitude. Sore spot on tongue late 2010. Dx as irritation. Leukoplakia Bx Feb 2011 - Lichen Planus. Bx May 2011 - Hyperplasia. Same sample retested as SCC. June 2011 Rt Hemigloss,ND,rff,33 Rads. Hosp for 15 days w/bi-lateral pneumonia. T3N1M0 Stage IV. | | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Jul 2009 Posts: 453 | Charm, there's not much I can say that hasn't been said by all these people here who admire, love and respect you. You and Bev are both strong people who can get through this. Third time WILL be the Charm. You've beaten it twice, you can do it again. Bev and you just hang on to each other and you will get through it together, one day at a time. You have had the best attitude throughout the 3 years I've been an OCF member. That positive spirit will get you through. You and Bev are in my thoughts.
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone No surgery Teeth removed 06/07/2009 radiation 13/07/2009 x 7wks chemo 15/07/2009 x 3 Cisplatin last TX 28/08/2009 25/11/2009 PET-lymph node activity. 08/01/2010 CT Scan-ALL CLEAR 03/03/2010-Peg removed 01/2013 left side of Jaw removed and replaced with pectoral flap. 23/12/2020 scan show lesion in tongue 01/2021 SCC stage 3 base of tongue diagnosed 01/03/2021 chemotherapy started.
| | | | Joined: Aug 2011 Posts: 78 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Aug 2011 Posts: 78 | You are well armed for battle!! Strength. Knowledge. Good doctors. And love, love, love!
All of my best & most healing thoughts to you & your family. Thank you for all of your wise posts. You are an educator!!
Sally
Sally, 38 years old T1N0M0 Left Tongue Lesion, Moderately Differentiated 10 + year history Leukoplakia, Mild Dysplasia before cancer diagnosis 8/2011 Scheduled Partial Glossectomy & Neck Dissection 9-17-11
| | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | I have nothing to say - just want to add my sincerest best wishes to the chorus.
Unfortunately I don't do hugs or blessings but if I did, I would fill this page with them. Draw on your strength and knowledge and support whilst taking one step at a time
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | Joined: May 2007 Posts: 621 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 621 | Just saw this on FB this morning. Hang tough man.
Kevin
9 YEAR SURVIVOR SCC Tongue (T3N0M0) diag 06/2006. No evidence of disease 2010 Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.� Stephen Hawking | | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2009 Posts: 440 | Charm!
I can't believe what I am reading! WHY!?!? WHY?!?!? WHY!?!?
This is so unfair. I can't imagine what you and Bev must be going through, you know we are all here for you. Big ((HUGS)) my friend.
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0 Elizabeth, 33, mother of 3 girls (4,7, &8yrs old) 3 rds of chemo(Carbo/Taxol) Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube. 30 rds of rads with weekly cisplatin SCANS ALL CLEAR! OCF Regional Coordinator of San Antonio Walk
| | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | Just some thoughts to hang on to (now I am over the shock and able to think a bit more clearly). *Sounds like the SCC is tonsillar which may mean that it is more accessible to surgery and less functionally destructive than BOT. *If SCC is tonsillar, total glossectomy might not be part of the plan. *Moderately differentiated suggests a better outcome than poorly differentiated. *You have had a few years to regain your health so you are better equipped physically than the second time around. *You have a direct line to the best "go to" team. *I assume this was caught early so hopefully treatment might not be so severe. *You are the perfect advocate for your own treatment
I know that you know all this but hope that if you see it written down, you will be better able to focus on it.
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | Joined: Jan 2009 Posts: 71 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jan 2009 Posts: 71 | Charm, Just found out about this through Elizabeth (Esikon) on Facebook. This really sucks. Talking with you and your wife was one of the highlights of the 2011 walk in San Antonio for my wife and I. Your story about the judge telling you to ask for an HC recess was a great one that i've retold to friends several times. Some of them were lawyers.
Your name was one of the first names i became familiar with on this board. I must admit that anything I say would be advice you've already given someone else. But, the best advice i've ever been given and that i always give when someone calls me up and says, "Please call my friend and talk to them, they've been diagnosed with oral cancer and they are afraid." is be STRONG. And I know you will.
I'm 3 1/2 years out now and only come back to this board every month or two to see what's going on, but this will have me coming back more often to check on you. Please keep us informed and tell your beautiful wife (I've seen her) we are here if she needs us.
57 @ Dx, Stg IV BOT (1.5cm), lymph nodes (lrgst 2.5cm), non-smoker, casual drinker and exercise nut, Cisplatin x 2, Erbetux w/IMRT x 35/70Gy, PEG, Treated in San Antonio @ CTRC 12/16/08-1/27/09. 3/5/09-CT 6/12/09-PET, PEG out 12/1/09-CT 12/6/10-PET 12-8/11-CT 1-4/13-CT (all clean) | | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2010 Posts: 531 | %&^*$@#_)(%#^&*()_)!!!
And that's all I have to say bout this...
CG to Ron Out of Pain 4/3/13 4/12-lung and under chin growth no treatment 1/13/12 lung biopsy 6/11 recur 6/30 resection #2 Clear margins Clear 12/10 Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out RAD 30 8/10 DX 4/2/10 "Oral Cavity" T3NOMO 12/28/07 Non Hodg Lymph remission 7/08 passed away 4.3.15, RIP Ron, you are greatly missed
| | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | Charm, I'm so, so sorry you have to go through this battle yet again. It's just not fair but life unfortunately isn't fair at times. I fear a recurrance with John and how I would handle it. I know so much more now than I did 3 years ago about this horrible disease but that can sometimes be a scarey thing also.
As a caregiver the only thing that kept me sane and calm was to feel like I was actively doing something and in the fight with John not just standing on the sidelines. John has never been on this message board and probably never will. He is a "private" person and would get very upset with me for "sharing" our lives with strangers. You strangers are now part of my extended family and a lifeline for so many.
For most of us females we have to talk about things and share our fears and concerns. Let Bev talk when she needs to and cry when she needs to.
YOU WILL BEAT THIS!!! We are all standing here fighting along with you! All My Best Always! Wanda
Wanda (47) caregiver to husband John (56) age at diag.(2009) 1-13-09 diagnosed Stage IV BOT SCC (HPV+) 2-12-09 PEG placed, 7-6-09 removed Cisplatin 7 weeks, 7 weeks (35) IMRT 4-15-09 - treatment completed 8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear 4-2013 - HBO (30 dives) tooth extraction 10-2019 - tooth extraction, HBO (10 dives) 11-2019 - Left lateral tongue SCC - Stage 2
| | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Charm,
I am so sorry that you have a recurrence. I second what Wanda said. In addition, Clark also does not come on these boards and so many things I have learned about this cancer, and the wonderful people I have met here are so special. There are many times I want to say something regarding a post or person from the boards but I have to be careful as Clark would find the info upsetting. The fact that you and Bev share so much of your experience with others is a gift to us all. I always look for your posts. I love your wit and wisdom, your sincerity and compassion.
I wish you did not have to endure this insult to your body and psyche. I pray for you and Bev and send you love and healing vibes. We will rally around you and fight with you. HUGS!
My best to you- Anita
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
| | | | Joined: May 2010 Posts: 224 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2010 Posts: 224 | So sorry to hear Charm....you are in my thoughts!
25/female at diagnosis Dx;stage 3 SCC tongue 03/25/2010 Surgery 04/13/2010 Trach,ng tube, peg feeding tube Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue. 30 rounds IMRT ended July 15,2010 | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | It does seem that when both members of the "survivor couple" come on this forum, it is more the exception than the norm and usually it is either the caregiver or the survivor. In my own experience, my son only came on very briefly, saying it was too worrisome for him to hear about what others were going through. I didn't push it because he was already suffering depression and in therapy for that and I so wanted for him to be able to get through his surviving the best way possible for him. For me, the fact that he did not come on here was an advantage in that I could express myself honestly, I could cry and be frustrated, knowing others would understand and I didn't have to worry about how I was holding it together, hiding my fears from him. He did get lots of help through all the posts that I made copies of for him to read. Whatever works for each of us is what helps us all get through this journey. Charm - you know we are all with you and Bev in this latest fight. Sending hope and prayers and positive vibes your way.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Feb 2011 Posts: 117 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Feb 2011 Posts: 117 | My dear Charm,
Sorry it has taken me several days to compose a post. I seemed to be at a loss for words about your latest news. IT SUCKS...
I don't know anyone who is better prepared for another round in this battle. You will do it and we will all be behind you holding you (and Bev) up. You know the drill, you know what to watch out for, who to get meds from, how to keep hydrated, etc. And if you falter, you have Bev there to keep you on the straight and narrow.
If Bev would like to chat with my caregiver husband, by all means he would be honored to help out. Eric Statler will tell you that Ted knows all about the caregiver role.
In the meantime, you are both on my mind and in my prayers.
Ingrid
DX 12/6/10 of T3 SCC Tongue. Surgery 1/3/11 was hemigloss & forearm free flap, midline mandibulectomy, Neck Disection-All nodes clear. Ended rads 5/11/11. Taste buds back to about 80%. PEG removed 4/5/12, experimenting eating real food again. If I can do this, so can you !! Stay Strong.
| | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | I have been reading this thread plus your previous one from last Friday and like many of us was shocked at your news. Your posts have always been read worthy given your knowledge, well researched posts, empathy and also your wonderful sense of humour. My very best wishes to you and Bev as you fight this dreadful disease again. We are all here to follow your journey with you and know that with your fighting spirit and your wonderful carer you will overcome this again. Love Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Charm,
You know that you are my Hero. I have a hard time adding to what others have said already. I can understand your worry for Bev. My Allison has been through the ringer time and time again and has never complained or freeked out (at least not in front of me).
Many a time I have sat and listened while some doctor gave me rotten news, all the time looking at that girl on the chair next to mine with her chin up, putting her hand on mine and letting me know in her unspoken way that she would be there for me whatever may come. How can we repay these wonderful women for all they do and all the pain and uncertainty they silently endure?
Anything, and I mean ANYTHING, just give me a call. If Bev wants to talk with Allison and compare notes or just rail against this dreaded disease, let me know and I'll have my girl call your girl.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | I am so sorry to hear this Charm.
Karen
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | NO!!!!!!!, sorry I have not been on in awhile. Do not have Internet acces except for phone and that is limited. I will definitely keep you in my prayers. I am just shocked at this news. I will try to get back here more often.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: May 2007 Posts: 132 "OCF Down Under" Senior Member (100+ posts) | "OCF Down Under" Senior Member (100+ posts) Joined: May 2007 Posts: 132 | Hi Charm, I am so sorry that you and Bev have to go through this again. I thought that something that might give you both cause for optimism is that after my second round of IMRT in 2010 I was cancer free for about 10 months and then was diagnosed with SCC in the left buccal area. It appeared to be localized and I had two surgeries to remove the suspect area. (I had cancer on one of the margins of the first surgery, hence the second op). All seemed good with this until my checkup when it appeared to be back. A biopsy confirmed it and a decision was made to do a wide area excision and replace it with a forearm free flap. This was done in February of 2011 and I have not had a problem since. I still run to my ENT everytime something concerns me. He had once told me that I should do the things I wanted to do do sooner rather than later but now he says that while my prognosis has to be somewhat guarded given the recurrent nature of my disease, I can now plan for the longer term. I am proof that a recurrence after being radiated twice is not a death sentence.
Tell Bev to be optimistic a day spent worrying about what might happen is a day wasted. If your disease is localized it is likely no radiation will be necessary, and surgery may completely removed.
Think positively!! Completely off topic I bought a Vitamix and am happily putting blended whole foods down my PEG. Thanks for that info. I will get a button next month.
Love and Best Wishes to you and Bev.
Sue G
55 y/o SCC LL Tongue 3/27/07 Part. mandibulectomy 9/2/07 Left ND 5/12/08 RT/Chemo Rec LL Tongue 07/09 Part gloss 8/5 & 8/25 Surg 10/28/09 re mets to R neck & L jaw RT & Chemo finished 12/22/09 PEG fitted 05/06/10 L buccal SCC 10/10 freeflap (forearm)surgery 2/28/11 L buccal and gingiva
| | | | Joined: Jan 2011 Posts: 123 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jan 2011 Posts: 123 | I am so sorry to hear this. You are such an inspiration and I am in awe of your strength and positivity! I feel for you and your wife - being a caregiver is hard, I know. But together you will both get through this!
Jill..CG to Ken, age 43,mom of 1yr old girl. DIAG:12/9/10 SCC BOT T4N0M0 HPV+ START:1/3/11 IMRT dailyX35 and 7 chemo END:2/23/11 PEG IN:1/15/11 Out:4/26/11 CT/MRI 4/25/11-marked improvement CT 6/11 new spots BX 6/23-cancer present Total Glossectomy sched 7/20/11 7/19/11 Ken's suffering ended
| | | | Joined: Apr 2012 Posts: 111 "OCF across the pond" Senior Member (100+ posts) | "OCF across the pond" Senior Member (100+ posts) Joined: Apr 2012 Posts: 111 | Hi Charm, I too have been benefiting greatly form your very valuable knowledge, especially with reguard to diet. You are a great inspiration to me. Your humour makes this forum seem very real rather than virtual. It seems so wrong that you should be dealing with this again. I hope we newbies at dealing with this horrrible cancer can help to give you back some of the support you have given us.
Best wishes, Sally
Dx 10/11 51yrs LBOT Stage 4 2nodes HPV16+. Non-smoker mod alcohol. 10/11 Induction chemox2 (Docetaxel, 5-Flu, Cisplatin) then Cisplatinx2 IMRTx30. Ended 01/13/12. 12/07/11 RIG. RIG removed 05/05/12. 4/12 CT scan clear. Visual scope checks clear as of 10/13. Learning to live with eating challenges.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Charm I have never felt this bad for anyone. Having met you online a few times and kidding with you made you a specil and intelligent person.If you had to you would look up the topic and give advice. This I appreciate very much. You have had me smiling and sometimes in teras. Man I pray that you will be fine and with us for another 40 yrs or more even if I won't be. The best of wishes to you and your wife for now and ever.This was a big shock of reallity for all the members of OFC.--- Ole typo Jim
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Okay - here I am waiting for the update. I know you had an appointment this morning, have calculated out how long approximately you would take to get home and digest/assess the info, so I am looking forward to hearing an update as soon as you feel ready to post one!
Many Hugs
Donna
P.S. I purposely didn't check OCF until after 12pm because my daughter believes even numbers are lucky and odd ones unlucky. Somehow this logical civil engineer has infected me with this bizarre superstition with even/odd! Go Figure.
Last edited by Pandora99; 08-28-2012 10:24 AM. Reason: typos!!
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | sorry for the delay in posting the update, but after my doctor's appointment, I had to drive the MRI scans and reports over to Georgetown CCC so my RO would have time to review them before my appointment tomorrow late afternoon. Then it was time to take my pain pills that I didn't this morning because I wanted to be clear headed. GOOD NEWS: It looks like I'll get to keep my tongue and voicebox. the pain in my tongue is just referred pain from the tumor pressing on a nerve. Complication: The tumor location in the left lateral wall/tonsil fossa makes surgery "highly problematic". That leaves only radiation & chemo. So tomorrow, my RO will schedule a Petscan and then see if I can do a third round of radiation (I just found an obscure article saying 133 GY total is doable and I've only had 97GY) I'm scheduled to "discuss" with my MO an NIH clinical trial for chemo that Brian Hill turned me onto which my surgeon thought would be just the ticket. Not clear yet on the mechanics of getting in but I do meet all the criteria. Now you all know what I know. Oh, bonus news, today's Wall Street Journal had an article listing all the medications that can mimic the effects of Alzheimer's disease re memory etc and I've been on two of them daily: Lipitor & Robinul. That explains why I can wake up and think: Huh, is my cancer really back? Keep the Faith Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | Sounds like you have some promising news with your latest update. Thats very good to hear!!! What about brachytherapy? Is that an option? Would it be helpful at all? ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Christine
I will check with my RO but my impression is that those radioactive seeds did not do very well for my tumor location. Too many complications with the carotid arteries & nerve damage from some studies I've read. Dr Google is somewhat depressing as he keeps pulling up excerpts like this [quote]Tonsillar fossa cancer presents a clinical treatment dilemma, as there are neither prospective randomized trials nor site-specific retrospective analyses that clearly indicate a superior approach to this locally and regionally aggressive disease[/quote] Still it never hurts to ask and he would know.. He's pretty sharp. Thanks for reminding me not to dismiss anything, Charm
Last edited by Charm2017; 08-28-2012 11:30 AM. Reason: added quote
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | [quote]Oh, bonus news, today's Wall Street Journal had an article listing all the medications that can mimic the effects of Alzheimer's disease re memory etc and I've been on two of them daily: Lipitor & Robinul. That explains why I can wake up and think: Huh, is my cancer really back? [/quote] Take double doses and maybe you will wake up with "what's cancer?"
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Charm,
What about IMPT for that "highly problematic" area?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | David
Thanks for suggesting yet another topic to bring up with my RO. Even though my CCC does not offer it, he will be able to let me know how it compares. I'm hoping that the prior fields did not include this section of my neck much. Charm
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Charm,
my tumor was just behind the area your recurrence is in. I know you had a similar treatment to mine three years ago, but they have made some advances. One of the things my doctor said whenever I would say that other institutions were unaware of these new developments was " I don't know why, we've been publishing our data for four years".
You might mention this to your team to see if they can gain any advantage from those reports. my ENT was Dr. Robert Ferris at UPMC. My RO was Dr. Dwight Heron. Dr. Heron was the guy who headed up the radiology aspect of these newer protocals.
Hope this helps
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Definitely sounds like good news... Fingers crossed it gets better.. Hugs.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Thank God for the OCF news feed. I just caught up on it and while it is only an "opinion" piece from NYT about IMPT entitled: It Costs More but is it worth it? So I will mention the caveats below when I discuss this with my RO late this afternoon. I've been so insistent in questioning my doctors the last 5 years about "how do you know this? ; your clinical experience? an article? a medical salesperson? studies?. [quote]The higher price would be worth it if proton beam therapy cured more people or significantly reduced side effects. But there is no evidence showing that this is true, except for a handful of rare pediatric cancers, like brain and spinal cord cancer... To generate sufficient revenue, proton beam facilities need to treat patients with other types of cancer. Consequently, they have been promoted for patients with lung, esophageal, breast, head and neck cancers. But the biggest target by far has been prostate cancer, diagnosed in nearly a quarter of a million men each year. There is no convincing evidence that proton beam therapy is as good as � much less better than � cheaper types of radiation for any one of these cancers. There has not been a single randomized trial, only small, short-term studies.[/quote] As much as I try to keep up on the research, Brian does it all for us on the OCF News Feed. Like the Washington Post ad says: [quote]OCF news, if you don't get it, you don't get it[/quote] Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | The reason I mentioned IMPT is that it was (I believe) designed to treat difficult to reach tumors, like brain, lung, etc. The articles I read (years ago) said that IMPT reaches the tumor without any damage to cells going in or out and when it reaches the pre computer designed tumor coordinates it enters it and conforms to the tumor and like a smart bomb, destroys just the tumor. So when you mentioned your "highly promblematic" tumor I thought that IMPT might be able to reach it and destroy it safely.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | David
Your impression is exactly the one I had from my research when this popped up on the forum. I did raise it with my RO with the caveats that I knew it was only proven with brain & pediatric cancer but seemed promising for head & neck also. I was stunned by his answer - even though he cautioned that he did not want to sound cynical nor be critical of the new IMPT centers. He had already referred several of his patients who were all rejected by more than one IMPT center since they had already had IMRT & Cyberknife. He said it was understandable that since IMPT is still seeking empirical validation for non brain cancer and non pediatric patients, that except for those two categories, patients who had radiation twice were not being accepted because it was more likely than not to have failures which would not necessarily be the fault of IMPT yet statistically they would. He emphasized what has been the story on this forum and several patients experience, re-radiation after the "maximum' is risky. He does it a lot, in part because of referrals from other hospitals, doctors and even other CCC. If he had an IMPT machine, he'd try it but he can understand since they are so scarce why they are being used on those whom they can help the most. Charm
Last edited by Charm2017; 08-29-2012 02:46 PM. Reason: typos
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Okay Here is the results of my RO visit today As far as IMPT, read the post above. As far as brachytherapy or seeds, he has done quite a few but the "hot spot" problem (the cells right next to the seed) in my case would cause cartilage necrosis in his experience. So that only leaves Cyberknife. He is getting a PETscan for me next week and then he is going to use some snazzy new technology that overlays the entire radiation fields of my first 4O IMRT over top of the second Cyberknife fields and then adds in the PETscan results of the tumor activity. Then he can see if there are enough areas and vectors to hone in the Cyberknife beams to kill the tumor without causing a cascade of necrosis that would mean I would have to have my larynx out and have a permanent trach. He pointed out that 97GY is quite a lot and there is a danger of closing out my airways entirely plus other very bad results with more radiation.. He thought that the NIH trial Brian found for me would be my only viable option if the fields overlap too much. Needless to say, my wife was disappointed. It did not help that the resident was so excited to meet me because I contradicted what he had been taught in medical school about maximum radiation. the only good news out of all of this is that the RO feels this is a new cancer, not a recurrence so it's not like this is a totally radiation resistant cancer. So the waiting begins again Charm
Last edited by Charm2017; 08-29-2012 03:02 PM. Reason: typos
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Not that anyone wants to have a New cancer but if its a better prognosis then yeah!! Hope thy can do the rads!!!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Brotha you and Bev are on my mind an in my heart my friend. I love you both very much.
To borrow your line...Keep the faith
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | This is so awful, Charm. You have been through so much and have been an inspiration to so many of us.
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | I certainly don't profess to understand the science your RO is dealing with comparing all the radiation options so it's difficult for me to totally understand why IMPT wouldn't deliver the least damage in the most effective way regardless of how many gys you have already had or the results of those overlays but it sounds like your fortunate that you have someone who is throughly examining all the options scientifically. Man lets hope you catch some breaks and this cancer can be trumped for good.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | David The reason you "don't understand" is that my RO agrees with you that IMPT would probably deliver the least damage. But so far none of his referrals for IMPT have been accepted if the patient already had two rounds of radiation. I've been researching the heck out of this after yesterday and so far the only IMPT center I could find regularly accepting re-radiation was in Geneva, Switzerland and even they would only accept one prior radiation. Abraham cancer center has a clinical trial for IMPT re-radiation but again seems to be only for one prior radiation.(NCT01126476) I did find an interviews with MD Anderson on why they prefer pediatric or brain cancer patients and even for those they reject some. [quote]Yeah, perfect patient would be generally at this point would be benign tumors and there's a reason for that is the advantage of proton is the dose falls off so rapidly and that's a good thing. You are decreasing the amount of radiation to the surrounding brain, but benign tumors are very sharply demarcated. There's not tumor cells extended beyond them, so that's why protons works well for those. We'd mentioned earlier glioblastoma, we don't treat those tumors with protons and there's reason for that, there have tumor cells that's spread out from them and that's way kind of lose the advantage of that sharp border with protons compared to the standard photon radiation therapy. [/quote] full podcast Best tumors for proton The practical problem is that since proton facilities can cost up to $225 million for each one, and the ones open are still in Phase I and Phase II trials to establish that in practice IMPT is as good as in theory and better than IMRT for non brain cancers such as prostate and head/neck, it would be counterproductive for any of them to treat an extremely high risk cohort such as patients with two full prior radiation treatments. There are already a number of articles, blogs etc all citing the lack of "proof" for IMPT. You are right that I am lucky to have an RO who has already tried to get IMPT for third time patients unsuccessfully so is willing to work with what is available. charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | I asked about IMPT when I had my recurrence. I got the same answer from a few different doctors. They said that the IMPT beam is very precise, probably too precise for head and neck cancers. Unless the cancer is very well defined and tight, the beam will not hit all the cancer cells around the edges as IMRT does. It does well with childhood cancers in certain places because those tumors tend to have very well defined edges and are typically very tight whereas Head and Neck cancers tend to be a bit more diffused at the edges.
Although there were a few trials out there at the time, no one I was dealing with felt it was a good idea to go off the farm that far when they had so much more experience with current radiation treatments.
My two cents.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Kelly211
I know how hard you pressed the doctors and how diligent you were in going from place to place (just like DavidCPA) did, so your post is very reassuring to me. I had read similar things but it's hard not to wish & hope for some "magic wand". The advice you were given takes the sting out of my RO's telling me IMPT would not take me anyway. The clinical trials in place will settle this question but , lots of articles point out that so far, the results for IMPT and IMRT for head & neck have not been "proven" to be different. Charm
Last edited by Charm2017; 08-30-2012 11:18 AM. Reason: back on point
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Wow!! I thought I was too old to learn something new and disgusting but even if you could find a IMPT facility that would treat you it doesn't sound like it would be to your advantage unless of course your tumor was tight and neat.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | DavidCPA
You old? We all know that you are keeping the Fountain of Youth location secret now that you found it. Everybody knows it was in Florida which is where it is according to Wikipedia. How else could you still be biking so many miles after Stage IV cancer? I'm gonna beat this the old fashioned hard way. Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | I'll try and find it and send you a ton of it. Remember I'm with you 1000%. Hell I'll bike up there and kill that damn crap myself if I have to. lol Yesterday I was riding along by myself at 18 mpg into a slight head wind (really struggling)and I look behind me and I see someone slowly but surely catching up so he has to be going 20, 22. Riding into a headwind by yourself is NOT fun. Anyway he pulls along beside me and it's a riding friend who has muscles on top of muscles and veins on top of veins, probably negative body fat, etc. I can hardly breath much less talk and he's talking up a storm. Now he's the one that must have found that spring because he's 75.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Oct 2008 Posts: 251 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Oct 2008 Posts: 251 | Charm, I apologize for not posting sooner and am greatly saddened by your recent news. But... I know you can do it!
And I can't resist, in the interest of those of us on these forums past their sixth decade (sadly too few for several reasons):
[quote=davidcpa]Yesterday I was riding along by myself at 18 mpg into a slight head wind (really struggling)and I look behind me and I see someone slowly but surely catching up so he has to be going 20, 22. Riding into a headwind by yourself is NOT fun. Anyway he pulls along beside me and it's a riding friend who has muscles on top of muscles and veins on top of veins, probably negative body fat, etc. I can hardly breath much less talk and he's talking up a storm. Now he's the one that must have found that spring because he's 75. [/quote]
David, Any "Old Frack" that can still get 18mpg is OK by me. What kind of motor you got on that bike?
Love you guys.
Catherine
2mm tumor excised 09/23/2008 (floor of mouth) SCC (superficially invasive, well-differentiated) Stage 1, T1N0M0 01/2009 and 01/2010 - PET/CT clear Four and 1/2 years - NED! "Detection can be easy, treatment is not!"
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Ooops typing to fast! 18 mph
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Hum, 18mpg, must be a Harley.
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | Davidcpa Ha! too funny that the same acronym was repeated! I thought this was an Americanism that didn't translate down under. Karen
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | It's good to have a nice laugh from these types of posts from my OCF family. I did think at first that DavidCPA was subtly bragging that his older super fit neighbor had to use a motorized bike to keep up with our OCF dope free version of Lance Armstrong. This morning I did have another cheering bit of news on the issue of speed I still have a better time for the marathon than any person who has run for President or Vice President VP candidate Paul Ryan has now formally admitted that his best marathon time is closer to 4 hours, not three hours as he initially claimed in an interview. It was a funny retraction since he claimed the "fact checker" was his brother who has the faster marathon times in his family and who has never broken three hours. His memory refreshed, Ryan now claims a 3 hour 50 minute time. Scott Douglas of Runner's World writes, "If Ryan has broken 3:00, he'd be the fastest marathoner to be on a national ticket. John Edwards has run 3:30; George W. Bush has run 3:44; Sarah Palin has run 3:59; and Al Gore has run 4:58." That leaves my 3 hours and 15 minutes as the best. Heck even my worst marathon time was 3:30 (I quit after 4 because the times were getting worse not better) My knees gave out and now the only championship I have is at my gym for holding the plank for 13 minutes and 4 seconds Trying to spend a lot of time at the gym this month to get stronger for the battle ahead in October. Have a great Labor Day weekend Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | OK I need a proof reader!
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | You guys amaze me!!!! And I mean that in a positive way!!
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | I just saw this link. I had 4 recurrences. Just completed IORT, which was a neck dissection, radiation during surgery, and a pectoral flap. In a few weeks, I will have more radiation, and chemo. Have you looked into laser surgery? Brachytherapy as mentioned or IORT? Also, they are doing more Reirridation than before now, but depends how much the area received, and reason for my flap with new tissue. Good luck.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Well still no word back from the radiology oncologist if he can devise a treatment plan. I'll give him until Monday after we get back from the David Nasto Memorial /OCF Walk in Andover NJ . Regular readers know I often advise newbies to get into their feelings of anger and fear and yearnings to be cured but not be trapped or overwhelmed by them by setting aside one or two 15 minutes of wallowing in them each day, then move on. I often rewrite songs I hear in my mind. Thought I'd share today's wallowing, brought on by an evocative Everly Brother's song: When Will I Be Loved; [quote] I've had radiation, I've had chemo When will I be cured I've been cut open, I'm on a Peg tube When will I be cured
When I get a new treatment that I want for mine It always breaks my heart in two, it happens every time I've been cheated, been mistreated When will I be cured
I've been made blue, I've been lied to, When will I be cured
When will I be cured FADE When will I be cured[/quote]
Then I think what if an Angel appeared and said I could be not only cured but made whole as if the Cancer had never happened, but I would have to lose the Love of my wife and son. I'd choose Love. As bad as this cancer is, when I was lonely and unloved, that was worse. Charm
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | That is just beautiful, Charm! The song I have always liked - and your version really makes it special but what really warmed my heart were your words to express so touchingly the importance of love in one's life and the people close to us.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | Charm
At the risk of coming across as an ignorant , would the song be better known to some of us younger FRACKs as sung by Linda Rondstadt? Need to know this so I can sing it to myself.
Loved your clarity around what it more important to you - although it would be nice to have both love and health
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hugs dude... Give your drs a kick in the butt times a wasting... Awesome song.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Karen
Yes, Linda Ronstadt did a cover version which I liked in college. The most recent one I saw was John Fogerty in a 2009 You tube video. I was going to link to You Tube but could not find the original more soulful Everly brothers version.
Yes, I'd like to be whole and cured and love but as another golden oldie band sang [quote]You can't always get what you want, but if you try sometimes, you get what you need[/quote] Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Sep 2012 Posts: 74 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2012 Posts: 74 | Charm, love your remake of the song. I like the Everly Brothers version better than Ronstadt's but both are good, also. I may use for a future tagline.
Michael (husband) and I do something very similar between ourselves, making up new lyrics. We also come up with apropos lyrics from songs for each of our blog headings and ask our readers to "name that tune". We even have a private list of songs we haven't used, not wanting to offend those who don't share our sometimes twisted sense of humor, for example "My Wife and My Dead Wife" by Robyn Hitchcock (suddenly thought of Schr�dinger's cat - don't know why that didn't occur to me before now).
Anyway, I've been here a very short time but have already come to look forward to your posts. I'm so sorry for what you're going through but your spirit is an inspiration to all.
Best of luck to you!
mausmarrow.com Age 59 ex-smoker 1989 1/10 dx MDS (blood cancer) 2010-11 21 cycles Vidaza 11/10 Bone Marrow Transplant 8/31/12 dx SCC left BOT HPV 16+ T1N2cM0 10/11/12 TORS partial glossectomy clear margins 10/24/12 bilateral ND/ii-iv 92 nodes all clear 10/30/12 dx revised T1N0M0 no chemo or rads
| | | | Joined: May 2008 Posts: 357 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: May 2008 Posts: 357 | Charm - I've been off the forum & was off FB during the time you got the diagnosis, so this is the first I've had a chance to catch up. I can't add anything that hasn't been said. YOu've been an inspiration to so many, & I know everyone is praying for you and a good outcome. Take care, Marlene
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Marlene Thanks for the kind words.
Everyone: I finally got my treatment plan this morning. Chemo this Saturday ; first of three weekly infusions of Carboplatin. (see my separate post where I am asking about Taxol being added as a "chaser" ) Then 5 more Cyberknifes starting next Friday October 5th and ending up on my birthday, the 11th. (when I will update my signature line to my new age)
My wife and I are so relieved to finally have the suspense over. Regular readers have probably deduced that I'm not a big fan of clinical trials which would have been my only alternative if they couldn't do a third round. Another reason to go to a CCC, because many non CCCs think you can't do radiation twice let alone three times, while even the CCCs who don't feel comfortable doing it will recommend a place that does.
Charm
Last edited by Charm2017; 09-24-2012 08:22 AM. Reason: typos
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Good - glad you you have your plan in hand. I don't know if telling you I am sending my best wishes is entirely honest as I am a worrier by nature, but will certainly be fretting for your treatment to be lacking in drama and the outcome to be excellent. Maria
Last edited by Maria; 09-24-2012 08:50 AM.
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Glad you have your plan all set. I'll be thinking of you (and I'm sure many others will be) as you get started on your journey this Saturday. Wishing the very best for you and hoping for everything to go just the way it is supposed to!
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | Im so glad you are finally ready to begin. Im sure you and Bev are very relieved!!! Wishing you all the best with everything you will be facing. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | Wonderful news, Charm. I wish you the very best, and it sounds like you're in good hands to get that. Your posts, and your latest problem, give hope to all of us if we ever have a recurrence and helps lead us in the right direction. Thank you for posting, and I pray for you to get an "ALL CLEAR" report in the future. julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Good luck friend. Did you tell them I'll ride up and do a English/Irish CPA dancechant if they think it will boost your treatment's impact?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Hi, Charm,
I am sorry that you have to go through this again. I wish you all that is positive as you navigate this path. You are an inspiration to me and I am sad that you have a recurrence. You are in my prayers and I send you and Bev my very best. I wish that I could have met you at Susan's Walk but Clark and I took a much needed vacation--first one in five years! Hang in there, good man!
Anita
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | About bloody time!! I have been watching and waiting to hear what the plan was - and am now THRILLED that you are about to start. Now you can settle in and focus on dealing with what will no doubt be a tough treatment plan. Awesome!! You are now done with that "have it back b.s." and are finally on the path to it being GONE GONE GONE like the wind!! Great news.
Hugs
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Sep 2009 Posts: 8 Member | Member Joined: Sep 2009 Posts: 8 | My prayers are with you! go get that son of b...! zap him off!
CG to father, SCC, soft palate - Aug09, 3 TIP, 6 Erbitux + 30 IMRT (60GY) - Jan 10 October '10, Left Partial Maxillectomy + Palatectomy + Recons, 8 methotrexate.Extreme pain in throat and head August '12 - Right partial Maxillectomy, Left complete maxillectomy, Mandibulectomy, further treatment? | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Okay, did my chemo today. Here's today's song from Jody Messina: Bring on the Rain Bring on the Rain The you tube version is the link above And I did not even have to change the lyrics but I did after some wine tonite [quote]Another day has almost come and gone Can't imagine what else could go wrong Sometimes I'd like to hide away somewhere and lock the door A single battle lost but not the war ('cause) [Chorus:] Tomorrow's another day And I'm thirsty anyway So bring on the radiation It's almost like the hard times circle 'round A couple drops and they all start coming down Yeah, I might feel defeated, And I might hang my head I might be barely breathing - but I'm not dead, no ('cause) [Chorus] I'm not gonna let it get me down I'm not gonna cry And I'm not gonna lose any sleep tonight ('cause) Tomorrow's another day And I am not afraid So bring on the radiation [Chorus] Bring on the radiation bring on the radiation Bring on the radiation Bring on, bring on, the radiation [/quote] charm
Last edited by Charm2017; 09-29-2012 03:32 PM. Reason: Changed the lyrics
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Beautiful song, Charm! I like your version of the lyrics. It would be nice if there was a collection of these songs where you've changed the lyrics to accommodate our survivors and have songs played for them during Rad Tx or Chemo. Was this song played during your chemo today?
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2011 Posts: 596 | Go get 'em, Charm! xoxo, Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11) SCC L oral tongue (no risk factors) L partial gloss/MND 3/28/11 @ 25 wks preg T1-2N0M0; no rads/chemo Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-) Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx. Various scans since rx ended are NED! Part of genetic study for rare cancers @ MGH. 44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | Thinking of you with your treatments. Hope it all goes as planned and that this time will be easier than the first 2 warm up rounds.
Best wishes and be well!!!!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | That is a beautiful song, one that I had never heard before. Thank you for sharing it. I, too, hope that your course is smooth and with no bumps in the road. I'm praying for you, Charm!
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
| | | | Joined: Aug 2012 Posts: 20 Member | Member Joined: Aug 2012 Posts: 20 | Great song. Made me cry but it has meaning! Thanks for posting it.
Female 47 former smoker (quit in 1986), very light drinker. 1st diag 8/1/11. Surgery 9/6/11 SCC L BOT Tongue T1N0MO stage II w/partial gloss with no rad or chemo follow up. Recur 8/16/12 T1N1M0 - stage III. Neck dissection surgery 8/29/12 with 35 sessions of rad and 6 chemo beginning 10/8/12.
| | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | Give em hell Charm!! Thinking of you and KNOWING this will be the last time! Kathy
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2011 Posts: 269 | you are in my thoughts and prayers.
Nancy (53 at dx) Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs 7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo. 5/29/13 - Found primary 7/3/13 - TORS 7/8/13 - Emergency Surgery/Blood vessel burst in throat 8/9/13 - Peg in 9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck 10/14/13 - Radiation ended! 11/12/13 - PEG out!
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hugs dude... you will get though this!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | Best wishes with everything this week! ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Thinking of you every day, knowing that you are attacking this with the intense determination that only you can bring to it. Love that you changed the lyrics - they are awesome. Know you and your beautiful wife are in my thoughts and prayers.
Hugs
Donna
(p.s. I played online duplicate bridge the other day with a lady from VA - very close to you! You never know when I will show up in your area for a bridge tournament!!)
Last edited by Pandora99; 09-30-2012 12:55 PM.
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Sep 2012 Posts: 74 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2012 Posts: 74 | Perfect song. Thinking of you and wishing you all the best.
mausmarrow.com Age 59 ex-smoker 1989 1/10 dx MDS (blood cancer) 2010-11 21 cycles Vidaza 11/10 Bone Marrow Transplant 8/31/12 dx SCC left BOT HPV 16+ T1N2cM0 10/11/12 TORS partial glossectomy clear margins 10/24/12 bilateral ND/ii-iv 92 nodes all clear 10/30/12 dx revised T1N0M0 no chemo or rads
| | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Jul 2009 Posts: 453 |
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone No surgery Teeth removed 06/07/2009 radiation 13/07/2009 x 7wks chemo 15/07/2009 x 3 Cisplatin last TX 28/08/2009 25/11/2009 PET-lymph node activity. 08/01/2010 CT Scan-ALL CLEAR 03/03/2010-Peg removed 01/2013 left side of Jaw removed and replaced with pectoral flap. 23/12/2020 scan show lesion in tongue 01/2021 SCC stage 3 base of tongue diagnosed 01/03/2021 chemotherapy started.
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Okay Charm - so I see your last post was on Oct 2nd. I am wondering how you are doing but expect you are too busy being dedicated to treatment to post. When you are able, we look forward to an update. Know that we are all sending good vibes and/or prayers,
Hugs to you.
Donna
Last edited by Pandora99; 10-04-2012 05:53 PM.
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Donna
Unfortunately I've been "too busy being dedicated" not to my TX, but to dealing with unexpected bureaucratic complications from turning 65 this month. My insurance as a former federal employee, like many others, makes Medicare my primary insurance automatically while of course still keep charging me my same premiums plus I pay another $1,200 for Part B coverage. Don't get me wrong, it's still a better deal than most all Americans have. The problem is twofold: (1) paperwork as apparently the default assumption is that between Sept 30th and October 1, I was miraculously cured and (2) I was born on the same day, different year, as my Dad so I have his name but with the traditional Jr. Medicare has my childhood legal name from Social Security but when I started working a half century ago, the computer systems did not have an entry field so there were no suffixes. So now all my medical records need to be "corrected' to show that I am still the same person and not my own son. My feeding tube supplier has put my orders on hold until they get extensive records from my doctor and the name changes done. This morning I have to fill out new forms before the radiation and chemo in three different places in the hospital to show Medicare is primary . So I'm sending emails, faxes, and making irate phone calls. It didn't help that I had a bad synergistic reaction to Robinul and Zofran and carboplatin that had me doubled up with abdominal pain for two days while dry heaving. Nothing I can't handle but it's very time consuming. I'm trying to look at it as funny in an existential absurdity way. Oops, have to run to get to the hospital early to get new orders for blood work with my childhood name Charm, Jr. 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Sep 2012 Posts: 74 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2012 Posts: 74 | What a nightmare dealing with both insurance companies and bureaucracies! When I read your post, I thought of this song - hope it brings a smile. Karen
"I'm My Own Grandpa"
"Many, many years ago when I was twenty-three I was married to a widow who was pretty as could be This widow had a grown-up daughter who had hair of red My father fell in love with her and soon they too were wed
"This made my dad my son-in-law and really changed my life For now my daughter was my mother, 'cause she was my father's wife And to complicate the matter, even though it brought me joy I soon became the father of a bouncing baby boy
"My little baby then became a brother-in-law to dad And so became my uncle, though it made me very sad For if he were my uncle, then that also made him brother Of the widow's grownup daughter, who was of course my step-mother
"Father's wife then had a son who kept them on the run And he became my grandchild, for he was my daughter's son My wife is now my mother's mother and it makes me blue Because although she is my wife, she's my grandmother too
"Now if my wife is my grandmother, then I'm her grandchild And every time I think of it, it nearly drives me wild 'Cause now I have become the strangest 'case you ever saw As husband of my grandmother, I am my own grandpa
"I'm my own grandpa, I'm my own grandpa It sounds funny, I know but it really is so I'm my own grandpa"
mausmarrow.com Age 59 ex-smoker 1989 1/10 dx MDS (blood cancer) 2010-11 21 cycles Vidaza 11/10 Bone Marrow Transplant 8/31/12 dx SCC left BOT HPV 16+ T1N2cM0 10/11/12 TORS partial glossectomy clear margins 10/24/12 bilateral ND/ii-iv 92 nodes all clear 10/30/12 dx revised T1N0M0 no chemo or rads
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Hey Charm, Jr. - I'm sorry about your reaction to the Robinal and Zofran but hopefully that's better now. Ahhh the paperwork involved! I think every survivor needs a secretary (in addition to a patient advocate) to take care of all the bureaucratic complications! What you've had to deal with does sound like the "I'm My Own Grandpa" song. I remember it well. When you mentioned turning 65 this month, I thought of the Beatles' song, thinking it was "When I'm 65". It's actually "When I'm 64" but if you've already turned 65, I'm sure you don't look a day over 64 so here is a Happy Birthday song for you: http://www.youtube.com/watch?v=u2CISVP3ov4
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | Sheesh Charm. Hope this gets settled soon. I am not the least bit surprised that you are trying to see some humor in this. I would expect no less. That's why we love you!! Hang in there you two!! Hope your belly is better. Kathy
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | So let me get this straight....you are now "Old Frack Jr."??
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Donna
As it turns out, only my new infusion supplier of feeding tubes is anal compulsive enough to require the Jr. All the doctors, the hospitals, pharmacies and even my insurance company just go by date of birth and don't use the suffix. Of course, I named my son after myself also, so there is a Charm3 or Charm III Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Oh Lord - Save us all - a Charm III (or version Charm 3.0)...LOL
Hugs
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Well many of you may have been wondering why in the world it was taking so long for my doctors to tell me if they could treat my third time recurrence. After that August consultation, nothing. I heard nothing until September 21st. Today my Blue Cross Blue Shield bills provided the answer. Between my RO and the team of radiation physicists at my CCC, from the period of September 6 until September 21, "dates of services", I was billed under the general category: Radiation Therapy 10 times for a whopping total of $21017.79 or Twenty One Thousand , Seventeen dollars and seventy nine cents. Mind you, this does NOT include even one Cyberknife radiation treatment which I still have not been billed for, nor the Petscan. Bear in mind that about 5 Thousand was for Sept 21st when I was taking my wife shopping in NYC at the Garment District. I was never even in the hospital any of the dates billed except two for visits. My insurance company Blue Cross Blue Shield took one look at it and laughed out loud and said, Right, you mean $6882.32 or Six Thousand Eight Hundred Eighty Two dollars and thirty two cents That way "all" I have to pay out of pocket is $1,032.36 or One Thousand Thirty Two dollars and thirty six cents. Now don't get me wrong, I'm in better shape than 75% of all US Americans insurance wise, but it looks like another year of our old big CRT TV instead of a flat screen. Well, at least from these bills, looks like they were working hard on figuring out my treatment. CherylD and Pandora (Donna); fine with me if your Canadian "socialist" health insurance pays for acupuncture and woo woo yet still comes in cheaper than the USA system Charm
Last edited by Charm2017; 10-16-2012 04:44 PM. Reason: typos
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Yeah! I just passed my first major milestone/marker in my recovery. Now I know I will make it.
Before I knew the cancer had come back, I had bought tickets back in July to see "Herman's Hermits Starring Peter Noone" (Younger readers may not remember this British invasion band that in 1964 and 1965 rivaled the Beatles in the USA, nor their 16 top hits: 1Mrs. Brown You've Got A Lovely Daughter 2.No Milk Today 3.End Of The World 4.This Door Swings Both Ways 5.Just A Little Bit Better 6.I'm Henry The 8th, I Am 7.There's A Kind Of Hush 8.Silhouettes 9.I'm Into Something Good 10.Can't You Hear My Heart Beat 11.Dandy 12.Wonderful World 13.Hold On 14.Listen People 15.Leaning On A Lampost 16.She's A Must To Avoid (Banned in Virgina since the DJ's mistook Peter's accent to be saying : She's a Muscular Boy)
As the weeks dragged on in September with my radiologist insisting that the physicists keep redoing their calculations on developing vectors for this cyberknife that would not lead to necrosis (something I did not realize until I demanded an explanation for all those bills in the post above for weeks of "radiation therapy" work when I wasn't even there) , we realized that the concert last night would be exactly one week after my last cyberknife and third chemo. Should we sell the tickets ? (the show was sold out and Stub Hub was offering $290 for the same two tickets we'd paid $90) But the Birchmere Music Hall is a classic venue where every seat lets you see the performer's face and gestures since it's so small. Yet each night this week I had been racing to the bathroom to vomit, then gag and then spit out huge bloody chunks of dissolving tumor and phlegm. I developed a game plan of taking two naps a day and doubling down on my Caphasol (thank you AnaD) and Ativan and Percocet. It worked. My wife and I could sit and remember the happy go lucky days of our youth. Peter sang each of his top 16 hits plus did impressions of Mick Jagger, Tom Jones, Johnny Cash, while telling funny stories about the Monkees and the Beatles. there was no intermission just high energy fun. Sitting in the dark, holding my wife's hand, we laughed and we cried (tears especially on End of the World with it's refrain [quote]I wake up in the morning and I wonder Why everything's the same as it was. I can't understand, no I can't understand Why life goes on the way it does Why do the birds go on singing? Why do the stars shine above? Don't they know it's the end of the world [/quote]which is how we felt in our hearts when we heard the cancer was back the third time. Instead, we left singing to ourselves, the lyrics to Wonderful World [quote]But I do know that I love you And I know that if you loved me too What a wonderful world this would be [/quote] Keep the Faith Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | Great post Charm!
Yes, I remember Herman's Hermits and most of those songs. I�m glad you and your wife were able to enjoy a night out that brought back many happy memories � and memories to cherish in the future!
Keep the Faith!
{{{HUGS}}}
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | Ive been concerned about you! I know how bad it is recovering from the rads and you are doing it for a 3rd time so it must be even worse.
Im so glad you were able to put your recovery on hold for the evening and go out on the town with your lovely wife. I hope our evening out enabled you both to forget the present and just enjoy yourselves without worrying about anything else.
Best wishes with your continued recovery!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | What a wonderful evening for the two of you!! I'm so glad you and your wife were able to make the concert. I so remember those beautiful songs! I hope they are revisited and enjoyed by our younger generation. Charm - what a "Wonderful World" it is with you in it! Thanks for sharing your hearts with us.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Love you brotha, thinking about you my friend
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Oct 2006 Posts: 383 | Best Wishes to you Charm! Concert sounded like a lot of fun. Would have been a good one to catch for sure!
Take care, positive thoughts & prayers your way, Steve
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | I owned a bost dealership in the late 80's and we sponsored a concert headlining him. We went bar hoping after the concert and he's a prince of a guy and very easy to talk to and get to know.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Sep 2012 Posts: 74 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2012 Posts: 74 | I love Herman's Hermits! Wonderful that you and your wife were able to have a slice of normalcy/fun in this otherwise messed up time. Karen
mausmarrow.com Age 59 ex-smoker 1989 1/10 dx MDS (blood cancer) 2010-11 21 cycles Vidaza 11/10 Bone Marrow Transplant 8/31/12 dx SCC left BOT HPV 16+ T1N2cM0 10/11/12 TORS partial glossectomy clear margins 10/24/12 bilateral ND/ii-iv 92 nodes all clear 10/30/12 dx revised T1N0M0 no chemo or rads
| | | | Joined: May 2012 Posts: 162 Likes: 1 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2012 Posts: 162 Likes: 1 | Very glad the Caphasol has been of some help Charm. So glad you and the Mrs. had a wondeful evening...those days or normalcy are so few and far between when in the trenches. Those are some really great songs you mentioned. It's amazing how powerful music can be, especially when you're dealing with this beast. A
P. S. During our time in U of C, there were a couple of musicians (guitar and cello) who came in once a week to play for the patients...this was their music ministry. The were very good and could play anything. We found that music took on an extra special meaning when you're sitting next to an IV pole of 5FU and listening between rads. That said, one week, a patient took over the guitar, starting singing a gospel song, something we would have ordinarily loved, however listening to him sing about waiting for his loved one on the other side of the shore was just too much for all of us.
P.S.S. You are now in the same catagory as Eric for making me cry this morning...keeping my eye on you!
wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
| | | | Joined: Oct 2011 Posts: 67 "OCF Canuck" Supporting Member (50+ posts) | "OCF Canuck" Supporting Member (50+ posts) Joined: Oct 2011 Posts: 67 | You brought back wonderful memories for me Charm. I know all the songs. Peter Noone is bi-polar I (the really crazy kind), and I admire him so much for dealing with the disorder. During my SCC treatment and subsequent behaviour, the Neurologist referred me to the psychological counseling program. I was diagnosed with bi-polar II (the less crazy kind). Before all this, I thought that dying of cancer would be better than living with depression, but I digress.
Your eloquent words bring hope and wonderment. Thank you.
Pain late 2009. Dx as change in altitude. Sore spot on tongue late 2010. Dx as irritation. Leukoplakia Bx Feb 2011 - Lichen Planus. Bx May 2011 - Hyperplasia. Same sample retested as SCC. June 2011 Rt Hemigloss,ND,rff,33 Rads. Hosp for 15 days w/bi-lateral pneumonia. T3N1M0 Stage IV. | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | So glad you had a night out Charm. Sounds like it was a great date night!!
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | Joined: Aug 2012 Posts: 4 Member | Member Joined: Aug 2012 Posts: 4 | Charm, so sorry to hear about this. I just finished 36 radiation treatments and 7 chemo treatments and I thought that was rough. I logged on to find out about the recurrence of HPV 16 + and I guess this isn't what I was hoping for at all. When I first joined this site I had no idea what all that stuff at the bottom of everyone's profile meant and now I understand most all most all of it. I will keep you in my prayers. God Bless.
BOT right side to the midline also some SCC in lymph nodes on both sides of neck/IMRT 36X 7 chemo treatments with Carboplatin. I received this type because I had previous hearing loss or so that's what I was told. HPV 16+
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Haven't seen you around for a couple of days Charm. Just wanted to let you know your presence and wisdom is missed. I hope you are maintaining your recovery schedule and we will hear from you when you feel up to it. Sending good vibes and prayers for quick healing your way.
Hugs
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | What Donna said. Love you brotha
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 |
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | THinking about you and hoping all is well. hugs...
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Today I got my two month checkup after radiation and the good news was that there is no visual sign of the third tumor. The mucositis has mostly healed, the thrush is gone, but now the mucous is really sticky. So much so that my ENT ordered a suction machine for me. I used one back in 2009 for eight months because of the volume of the mucous, but this time it's because the mucous is so sticky, like melted glue that even seltzer water doesn't faze it. I'm hoping this will work as it's getting tiresome (literally) to be waking up multiple times in the night choking. No scans until the three month mark, mid January, and my ENT agrees with me that a MRI is more accurate than a Petscan - no false positives just because normal mouth cells regenerating can suck up sugar as fast as a tumor.
Last edited by Charm2017; 12-11-2012 01:39 PM. Reason: typos
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | Charm, Ive been watching for an update about your recovery. I knew there had to be one sooner or later. Also knew you must be feeling better as I see you posting more frequently. So glad to hear you are recovering so quickly.
Sorry to hear about the darn mucous! That really stinks but its a temporary issue. Can you try using a water pik on the lowest setting to help get the gunk out of your mouth? Its worth a try, maybe it would work. If you have prescription mouthwash like peridex, dilute it 3 or 4 parts water to 1 part of mouthwash so it wont burn your sensitive mouth. Or maybe try diluted biotene or seltzer water like you used before. Hope this phase goes by quickly!!!
Keeping you in my thoughts! Be well buddy!!!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Better the mucous than perhaps the alternative! From where you started this thread I think this news is FANTASTIC!!!!
So let's stick with THIRD TIMES A CHARM!
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Very glad to see your update. You are one tough dude! Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Great news, Charm! You certainly have been through a tough time. I sure hope that you get some relief soon from that sticky mucus. Here's wishing that the suction machine can clear a lot of it out and you can get a good night's sleep. Sending you hugs!
My best� Anita
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
| | | | Joined: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Oct 2011 Posts: 225 | Charm, that is such good news. The mucous sounds ghastly, especially as it's so badly affecting your sleep. I hope you can get on top of it quickly and get some decent rest. Best wishes, Linda
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good. | | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | Great news, Charm! Compared to other treatments a suction machine provided longer periods of relief from mucous sticking and taking over my mouth causing me to feel sick constantly. I hope the machine helps give you a much needed break.
Karen
Last edited by Karen Rose; 12-11-2012 08:13 PM.
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | I'll have my post treatment scan after you in Febuary, but having a PET/CT instead. Good luck with the aspirator, which I have used in the hospital, but not at home.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Thank you all for the supportive replies. I did not expect this third time to be as hard as it has turned out, although I am developing a healthy respect for the party line that going above 77 GY really does mean some serious damage with long lasting effects. Still, I will be home for Christmas instead of in a hospice as we first feared, so it's all good. Keep the Faith Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | Charm: It's always good to see your posts that let us know how you are doing. You are a "Shining Example" of how we all should be when tackling the many set-backs you have had. I see you plugging away constantly helping "newbie's" when they post, and others who are asking for advice, and am amazed at the amount of time you spend helping them. And all the time, you are suffering with your own problems, but never complain. See, that's being a "Shining Example." I pray that one day you'll be free from all the crappy problems the treatments caused. I hate mucus also, and have been battling it for some time (5 years since my treatments), so know how nasty that stuff is, sticky or frothy, yuk! Keep updating us and hope you get relief soon. julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | Charm,
I�ve been wondering how you were doing and was anxiously waiting for an update. The good news was worth the wait!
I hope the suction machine helps with the mucous. It is great that you will be home for Christmas to enjoy the holiday with your family and friends!
I agree with Julieann that you are a "Shining Example" of how to deal with the crap that is handed you at times � way too many times � and how you were still offering support and advice to newbies while dealing with you own issues.
I wish you the best!
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2011 Posts: 596 | Charm, I have my first scan in the beginning of January. My team agreed that an MRI with contrast would give the most accurate picture, as well. I panic with MRIs, despite lots of meds. The only way I can get through it is to take meds and the let my husband come in and rub my legs during the scan. There's something calming about knowing that he is there and could "pull me out in a pinch". I know this sounds crazy, but that's me!
Best of luck with your scan. Let's cross the finish line together, holding hands!
Love ya, Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11) SCC L oral tongue (no risk factors) L partial gloss/MND 3/28/11 @ 25 wks preg T1-2N0M0; no rads/chemo Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-) Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx. Various scans since rx ended are NED! Part of genetic study for rare cancers @ MGH. 44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | Wonderful to see you posting and recovering Charm, all be it with the sticky mucous issue. A huge understatement when you say that you will be home for Christmas instead of hospice Best wishes to both you and Kerri with the January MRI's. Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | So glad your back in the swing of things... And that you'll be home for Christmas. That's awesome. Hugs dude!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | You continue to be inspirational Charm. Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | It is just so awesome to know how you are doing, Charm and Kerri! Best wishes for more good updates. You really are an inspiration to all of us!
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Kerri
Great to see you posting again. You have had it so much harder than I. I am pleasantly surprised to read that your MRI place accommodates your husband to rub your legs during the scan. My CCC is pretty strict about nobody being in the room with me.
Crossing the finish line as winners together sounds like a great plan to me. We can do this. Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Wow: "Shining example" - I really appreciate that sentiment, as there are some people who would nod and say: yeah, Charm is just like Jack Nicholson in the Shining. although I would counter, right guy, wrong movie: try Easy Rider. But let's give credit where credit is due: my wife, Bev. Without her caregiving, love and support, I could not go on. Today, she just finished changing out my AMT mini one Button (low profile G-tube ) in the comfort of our home with a new one. What a difference between her ministrations and the hospital hassle. My CCC trained her after I kept complaining, that since the beauty of the button is that it's customized for each patient, she can't put the button in too deep or too short unlike the dangling one length fits all tube. I sometimes worry about scaring the newest members since we all know that fear of recurrence lurks in every cancer patient and caregiver so I keep this thread in the recurrence forum. When I first joined OCF, I would not even read this forum lest I Jinx myself. Now, it's a real comfort. Plus many others like PaulB, Kelly211, etc are showing that radiation is no longer a one shot deal and there is hope even if the cancer does come back. Thank you all again Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | Charm,
Not much to say but that I continue to marvel at your strength thru all this BS. I know you must have down times but for the most part, all I see is your fighting spirit.
I am so happy that your life partner and caregiver is there for you. Kudos to Bev for hanging in there thru all that has come your way.
I wish you peace tonight dear sir,
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997. DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0 TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5. TREATMENT END: 10/1/07 PEG OUT: 1/08 PORT OUT: 4/09 FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | As I have said before Charm...You rock and we all love you!!! Great to see Kerri too. Merry Christmas Friends, Kathy
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Glad to see you doing well. You were always an inspiration to me. Sorry I have not posted much.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
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