| | Joined: Jan 2011 Posts: 168 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Jan 2011 Posts: 168 | Thanks David: Your words mean a lot to me. I can't believe I found this site. It's really great. -Michelle
SCC left tonsil, stage IV, HPV+, metastatic to one lymph node. Biopsy 12/23/10; tonsillectomy 1/13/11; DX 1/25/11; Peg in 1/28/11. Peg out 6/29. TX 1/31/11-3/21/11: 35 IMRT plus 3 Cisplatin. Pet-Scan 6/20/11 = CLEAR! Three years out, learning to live with the long-term side effects of radiation while reminding myself to feel blessed.
| | | | | Joined: Jan 2011 Posts: 168 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Jan 2011 Posts: 168 | Thank you for sharing your husband's story with me. You must be so relieved that his scans are coming back clear. Yes, I was told the HPV+ tumors respond well to treatment. Glad we have something in our favor. I am not happy about having the feeding tube put in on Friday, but who is? Please accept all the positive thoughts I am sending. Best, Michelle
SCC left tonsil, stage IV, HPV+, metastatic to one lymph node. Biopsy 12/23/10; tonsillectomy 1/13/11; DX 1/25/11; Peg in 1/28/11. Peg out 6/29. TX 1/31/11-3/21/11: 35 IMRT plus 3 Cisplatin. Pet-Scan 6/20/11 = CLEAR! Three years out, learning to live with the long-term side effects of radiation while reminding myself to feel blessed.
| | | | | Joined: Jan 2011 Posts: 168 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Jan 2011 Posts: 168 | Thanks, Margaret, for your reply. Did you have something called induction chemotherapy at Dana Farber? My doctors at Baystate in Springfield seem certain that Dana-Farber will recommend it on top of the 35 treatments of radiation and 3x chemotherapy. I gather it is pretty intense. The literature out there argues for against that much chemo. How exciting for you to be able to write "cancer-free." Keep writing it! Keep being it! Michelle
SCC left tonsil, stage IV, HPV+, metastatic to one lymph node. Biopsy 12/23/10; tonsillectomy 1/13/11; DX 1/25/11; Peg in 1/28/11. Peg out 6/29. TX 1/31/11-3/21/11: 35 IMRT plus 3 Cisplatin. Pet-Scan 6/20/11 = CLEAR! Three years out, learning to live with the long-term side effects of radiation while reminding myself to feel blessed.
| | | | | 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 | Michelle,
We will go over everything when you call but I'm sure they mean concurrent chemo as opposed to induction with the former meaning radiation and chemo given together and the latter meaning just chemo alone as the only treatment plan.
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: 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 | Dont worry about the peg tube being put in. It will be uncomfortable for a few days. If it feels too tight make sure you have the doc loosen it. Im full of peg tube pointers so let me know if you have any questions. You sure have your hands full with having 3 children. Twins too! Make sure you keep a log of every single offer of assistance. With 3 young children you will need some helpers. Thanks for adding the signature. It helps alot 
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 | Bst of luck Michelle, my thoughts and prayers are with you! I know how scary it can be!
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: May 2009 Posts: 132 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2009 Posts: 132 | Michelle, I was treated at Dana-Farber, and they were wonderful on all counts! Skilled, kind, attentive; I continue to have my check-ups there and continue to be wowed by them. I had surgery, then concurrent radiation and chemo -- and I've been cancer-free for almost a year and a half now.
Much luck with everything; you're in good hands!
Chrissy
Stage 2 SCC upper right palate
Hemi-palatectomy and maxillectomy 5/28/09
Six teeth gone
IMRT x30 starts July 13. Completed 8/26/09
Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Michelle,
No, my tumor was on the forward part of the tongue and was removed surgically before I underwent radiation/concurrent chemotherapy to clean everything up so your treatment plan will be different than mine.
I will say that all of the treatment options for head & neck cancer are pretty intense and yes, its fabulous to be able to say 'cancer-free.'
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Jan 2011 Posts: 15 Member | | Member
Joined: Jan 2011 Posts: 15 | Michelle Ann, keep me posted about your feeding tube. I will most likely have to have one, I'm tall and thin and can't afford to lose much. I've already lost 7 pounds from the tonsilectomy. It may be trite but I have asked myself the same question many times.
Joel
Joel, 52
SCC HN Stage IV, Excisional biopsy to remove 4 lymph nodes 12/2/10, Diagnosed 12/9/10, Tonsils removed, mouth biopsy 1/13/11, wisdom teeth out 2/7/11, chemo starts 2/22.
| | | | | Joined: May 2010 Posts: 224 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: May 2010 Posts: 224 | No matter how intense and scary it is, Go through with it. I will tell you I was scared out of my mind, but am glad I went through everything I did, because I am still alive today.
Only thing I know about BOT is I have not so far heard of anyone having surgery before radiation and chemo.
I know with my treatment i lost 70 lbs, and I was a bit overweight before, so i thought i would be fine, but when you lose the weight, it's not the fat that you would like to lose, it's muscle. so it's really important to eat what you can now and try to stay as active as you can, while you can.
I depended on my peg to get my pills in, and even though I couldn't use it so much for nutrition as I contracted cdiff during my hospital stay when they put it in, Most don't have a problem with it, and they can use it to get a decent amount of calories and fluids in a day.
I had to have a PICC line put in, almost like an iv, but goes straight to your heart, for my nourishment issues cuz of the cdiff that wasn't diagnosed correctly until after i had peg pulled.
I am glad you found this site, and it's tough to say what exactly someone will go through because no two surgeries, treatments, side effects, or people are the same. Everyone reacts differently when it comes to healing time, treatment and meds. But I know the people that have had surgeries or treatment like mine after I did, I was glad to be able to help them when they have had some things pop up, and was happy to let them know what happened for me, so they could compare, and know whether it was a more "normal" side effect, or something not "normal". I always advise to tell your doctors everything that is going on, as they are the best to get info from, but in a way I guess it just made my anxiety a bit easier to manage when I had people on here to talk to.
I will keep you in my thoughts, and hopefully you will be added to the number of people on here that are cancer free still after treatment!!
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
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