| | 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 05:16 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: 7 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: 7 | 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 05:26 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: 7 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: 7 | 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 05:33 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 06:44 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 | | |
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