| Joined: Nov 2009 Posts: 212 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Nov 2009 Posts: 212 | Hello Friends, Well I am not the daily visitor as I once was. I am 6 months post and doing well. Still have taste bud issues, slaiva is only so so but I getting better. Working and traveling full time again, that too is only soso!!!! I do have a minor problem and have not seen it on the boards before I have peripheral neuropathy from the Chemo. It is a tingleing in my toes and fingers, more an irritation than a problem and hopefully it will go away. There are drugs for it but I think I have had enough drugs for a while. Has any one experienced this ? Hope you are all doing well! 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: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | I had peripheral neuropathy following a treatment many years ago for a different psuedo-cancer/auto-immune related circulatory disorder.
The neuropathy diminished gradually over time, but it took many year to totally go away.
With mine, I often had episodes that felt more like electric shocks than tingling! Elbow and ankle 'shocks' were the worse.
My primary chemo/meds at that time were oral & IV Cytoxan, IV Solumedrol, oral Prednisone and oral minoxidil.
I beleive the neuropathy was primary attributed to the disease and Cytoxan. I also suffered kidney damage.
Hopefully your neuropathy will also diminish over time.
Don TXN2bM0 Stage IVa SCC-Occult Primary FNA 6/6/08-SCC in node<2cm PET/CT 6/19/08-SCC in 2nd node<1cm HiRes CT 6/21/08 Exploratory,Tonsillectomy(benign),Right SND 6/23/08 PEG 7/3/08-11/6/08 35 TomoTherapy 7/16/08-9/04/08 No Chemo Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I have the tingling sensation in my toes for the last over 2 years but have never mentioned it to my Drs, I don't need more meds gong into me. Hopefully one day it will just leave. It does get on your nerves tho and after sleeping it seems worse.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 583 | Steve, Well, I just made an appointment for this issue. I am 4 yrs out and this started last summer.?? I thought I would have had this when I first finished treatment, not 4 years later. I have the tingling, burning & pain feelings. I also had the electric shocks off and on. I am also getting this in my hands as well. If I am up and moving around, it is better. At night is the worst. I do take Aleve, or I will take Amitriptyline which is for Fibromyalgia. I take this only at night to help me sleep. I wish I had some answers for you, but I don't, just understanding how you are feeling. Maybe someone else will give us some answers.. take care.  I had shingle about a year and a half ago. I am wondering if this is what started it all? I know how you feel.
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
| | | | Joined: Nov 2007 Posts: 12 Member | Member Joined: Nov 2007 Posts: 12 | I am 18 months post chemo-radiation, and I have an issue with my tongue that I think might be a neuropathy. It gets tingly and white, as if all the blood has drained out of it, and it is difficult to talk. And then it goes away. I have this daily. But once every couple of weeks, the blood completely drains from the tips of my left forefinger and middle finger, and they feel totally numb. I just assume this is from the radiation. None of my doctors know what to make of it or what to do about it.
Lauren | | | | Joined: Jul 2004 Posts: 188 Likes: 1 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jul 2004 Posts: 188 Likes: 1 | Steve, I'm 6 years out and still have neuropathy issues with my feet. A numbness and tingling that I heard best described on this board as similar to walking in wet sand. It's an annoyance, but nothing that is bad enough to start another drug. It doesn't seem to be getting any worse ( or any better) at this point, so I just look at it as another gift from chemo to deal with. Not a real detriment to my quality of life.
Good health,
Chuck
SCC Stage IV right tonsil T3N3M0. Dx 08/03. Clinical Trial:8 weeks Taxol, Carboplatin then Hydrea, 5FU, IMRT x's 48, SND, Iressa x 2yrs. Now 20 years out and thriving. Dealing with a Prostate cancer diagnosis now. Add a Bladder cancer diagnosis to all the fun. It's always something "Adversity doesn't build character, it reveals it." | | | | Joined: May 2010 Posts: 61 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: May 2010 Posts: 61 | I am six months out of treatment. I have the numbness and tingling mostly in my right foot. It didn't really start until post treatment. I mentioned it to my Oncologist, and he said usually people only get that during chemo... like I am not supposed to have it now, even though I just told him I DO have it NOW... he didn't offer any treatment, just said I shouldn't have it... I plan to bring it up again at my six month scan results appointment.
Survivor. 55yr male. Dx 07/09 SqCCa Stage IV, Rt Tonsil, Lt&Rt Lymph Nodes. Aborted tonsilectomy 07/09. Chemo port 07/09. PEG 09/09. Chemo - 3xCisplatin 6xErbitux. RTx35. Tx ended 11/09. CAT scan (clean) 01/10. PET scan (clean) 02/10. Port & PEG removed 04/10.
| | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | I have the numbness and tingling in my feet as well. It's not painful, but just annoying. My chemo guy said that it was most likely from the chemo treatments, even though I finished them in August. I never had it during chemo. He said that it could hang on for quite a while.
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 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 Cisplatin by itself and I never had any such feelings. Which chemo does your doc think causes this?
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 | I had Cisplatin, also. I guess that everybody is different.
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.
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