| | 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 had only Cisplatin and I was never told about a possible side effect of numbness and I never experienced it either.
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: Nov 2009 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 | This forum is great! It's nice to know that others are going through the same challenges, and I'm not alone!
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 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | Yes, that's been a big help for me and now that I'm back to eating (almost) normally and other areas of my life are slowly retutning to normal, I hope that helps for those who have a hard time seeing the light at the end of the tunnel. It is there and, no, it's not an oncoming train.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | | Joined: May 2009 Posts: 72 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: May 2009 Posts: 72 | Hi Tristeve,
My husband had the same treatment as you ( almost the same). He is slowly just now gaining strength back. He goes for walks and each day he gains a bit more strength back. He still drinks ensures to supplement. I would say that his strength started to come back after he got off the pain meds ( morphine) for severe mouth sores. He has pretty bad neuropathy in his feet and his taste is off and salvary glands affected. Each day is a day towards improvement. He lost 30 lbs and is very slowly gaining it back. I think 4 pounds so far. Hang in there, you will heal!!I'm sure he would speak with you if you would like. Take it easy. Your body was put through torture!
Vanessa ( wife)
Jeff age 49 DX 5/8/09 Tonsil cancer T2N2BMO. Tonsillectomy 5/14/09. TX: Cisplatin 3x's every 21 days w/ 33 Rad concurrent. 2-3 nodes on right neck affected. PEG 7/10/09. Chemo/rad start 6/12/9, TX finished 7/28/09. Extended TX
3 more chemo/Cisplatin/5FU/Docetaxil start 9/11, Clean PET 10/29/09.
| | | | | Joined: Nov 2009 Posts: 212 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Nov 2009 Posts: 212 | That does sound like me! I am 11 weks out today. Off the opiates for a couple of weeks. Mostly pain free. I eat like a mainack now steaks, fish, walffles with whipped cream, I even had onion rings the other day. I am still quite weak and do try and walk every day. It is a long journey back, I take it day by day.
Next week is a biggie, I will have my PRG removed and my first PET scan.
Steve
70 male, athlete...again
SSC of undetermined orgin , early july 09
40 tx radiation, 8 chemo cisplatin and ebuterx
finished TX in mid Sept 09
Clear at the 6 year mark!
Back to swimming, biking and running! just a tad slower
never regained my weight, even when I eat lots and lots, just a skinny guy now
Just way glad to be seeing the green side up!
| | | | | Joined: May 2009 Posts: 72 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: May 2009 Posts: 72 | Wow,
Sounds like your are eating a lot of different stuff.You'll gain back your weight in no time. Are you able to tast pretty well? Glad to hear you are getting the PEG out. Nice not to have a tube coming out of your stomach! We will be thinking of you in RE: to a clear PET scan. For us it was hard to move forward until we got the results!!
Vanessa
Jeff age 49 DX 5/8/09 Tonsil cancer T2N2BMO. Tonsillectomy 5/14/09. TX: Cisplatin 3x's every 21 days w/ 33 Rad concurrent. 2-3 nodes on right neck affected. PEG 7/10/09. Chemo/rad start 6/12/9, TX finished 7/28/09. Extended TX
3 more chemo/Cisplatin/5FU/Docetaxil start 9/11, Clean PET 10/29/09.
| | | | | 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 | Steve,
Don't be surprised if you don't gain any weight regardless of how much you eat as your recovery will consume a ton of calories without you even realizing it. I was downing 3000+ calories a day post Tx and I didn't start to put back on weight until my 2nd year.
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: May 2009 Posts: 72 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: May 2009 Posts: 72 | David,
Thanks for the reality check. My husband is eating quite a bit also and his weight is creeping back up very very slowly. I'll keep reminding him it takes time. He is also going to the gym everyday which I think really helps his healing and mental state.
Vanessa
Jeff age 49 DX 5/8/09 Tonsil cancer T2N2BMO. Tonsillectomy 5/14/09. TX: Cisplatin 3x's every 21 days w/ 33 Rad concurrent. 2-3 nodes on right neck affected. PEG 7/10/09. Chemo/rad start 6/12/9, TX finished 7/28/09. Extended TX
3 more chemo/Cisplatin/5FU/Docetaxil start 9/11, Clean PET 10/29/09.
| | | | | 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 | Vanessa,
Of course that also expends calories.
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.
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