| | Joined: Jan 2012 Posts: 17 Member | OP  Member
Joined: Jan 2012 Posts: 17 | Hi, I have stage 4 HPV tonsil cancer. I completed treatment the end of September - 35 radiation treatments and three cisplatin. When the physician tells you that the treatment is one of the hardest cancer treatments, you really can't understand. I was lucky enough to have a sister that was willing to move in with me (from another state) throughout treatment. She's also a home health nurse. She tells me all the time now that she saved my life. She did feedings through my peg everytime I fell asleep. Otherwise, I just threw up. We started this after I lost 11 pounds the first week of treatment (dropped to 134). Feeling much better now and glad to be alive. Angie
51 y/o Stage 4 HPV Tonsil Cancer IMRT & Cisplatin. Completed 9/26/2011.
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Welcome to OCF Angie!
I'm glad that you found our little oasis on the net! What you will find on these forums are people that have had a similar experience as you that you can both draw support from and give support to.
There is no doubt that chemo and radiation are a tough experience and I'm really happy to hear that you made it through and are feeling on the up and up!
Glad to have you aboard!
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 | Angie,
You are so right that when the doctors tell you what to expect you really have no idea. I listened when they described it, but I really had no clue until I experienced it. You have come to a fantastic place for support and understanding. You will find the greatest people in the world here. I'm so glad that you got through your treatments and are feeling better. Welcome!
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: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Angie, welcome and I'm glad you got through what's undoubtedly one of the toughest challenges anyone can face. That you had your sister to help is wonderful and she too is a hero.
Let us know any way we can help. I'm so glad to read that you're feeling better!
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Hi Angie:
Welcome. I, too, had tonsil cancer (treatments ended 4 years ago in February) and other than some radiation after effects, am doing okay. I am glad you found us, and also that you're from Alabama too. There's not many of us on here. Hope to hear more in the futre.
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: 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 | Welcome to OCF, Angie. Treatments sure can be brutal for many of us. Glad you are past that and have started to recover. Best wishes with your continued improvements!
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: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Welcome Angie! Congrats on finishing treatments and now to living life again. Your sister is a hero in my book!
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: 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 | Our recovery can take every bit of 2 years so don't get discouraged.
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: 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 | Hi - and welcome! Congratulations on getting through it!
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 2012 Posts: 17 Member | | OP Member
Joined: Jan 2012 Posts: 17 | Thanks David,
I have found myself getting discouraged and a little weepy over the last couple of weeks. I kept improving rapidly and now I'm kinda at a stand still. I'm still having small improvements - I was able to get dressed for work yesterday am without any rest periods. So, my stamina and strength are improving slightly.
Angie
51 y/o Stage 4 HPV Tonsil Cancer IMRT & Cisplatin. Completed 9/26/2011.
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