| 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 ![frown frown](/forums/images/graemlins/default/frown.gif) 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 ![smile smile](/forums/images/graemlins/default/smile.gif) . 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!
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