| Joined: Jun 2010 Posts: 153 "OCF Canuck, across the pond" Senior Member (100+ posts) | OP "OCF Canuck, across the pond" Senior Member (100+ posts) Joined: Jun 2010 Posts: 153 | Hi,
At 4.5 months post radiation/chemo for tonsillar scc with metastases to right neck, I'm experiencing a numbness in the soles of my feet and perhaps my fingers as well. This is exacerbated when I tip my head forward, creating a sort of "buzz" sensation in the backs of my calves.
I'm told by my Rad Oncologist that this is a common and temporary side-effect at this stage post Tx of the radiation hit to my spine.
So, anyone out there who's experiencing this, should be able to take some comfort in the notion that it's common and should clear up with time.
-Seth
47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014. Sadly has passed away, notified Jan 2015.
| | | | Joined: Jun 2010 Posts: 153 "OCF Canuck, across the pond" Senior Member (100+ posts) | OP "OCF Canuck, across the pond" Senior Member (100+ posts) Joined: Jun 2010 Posts: 153 | I found this article (below) very interesting. It suggests that both chemotherapy and radiation to the spine (an unintended impact of radiation to the head and neck such as in my case of tonsil SCC) can result in peripheral neuropathy. Of interest is the statement that for some people this will improve or resolve in 6 to 12 months (but not for everyone). This fits with what a friend was told about the "buzz" he experiences when he tips his head forward; that it should go away with time: http://www.greenhosp.org/pe_pdf/cancersymptom_neuropathy.pdf
47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014. Sadly has passed away, notified Jan 2015.
| | | | 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 | Post Tx I suffered imbalance issues especially with going up and down our stairs at home. If I didn't look where I was going I felt the sensation of missing a step every now and then. I had to hold onto the rail to feel comfortable. I don't know how long it took, probably in that 6 to 12 month period mentioned but I got over it.
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 2010 Posts: 153 "OCF Canuck, across the pond" Senior Member (100+ posts) | OP "OCF Canuck, across the pond" Senior Member (100+ posts) Joined: Jun 2010 Posts: 153 | Not posting just to keep my topic alive, but I had a meeting with my UK surgeon today (still all good, no indication of any problems) and he stated that the numb soles of feet is most likely from the chemo (Cisplatin), and that effect of radiation on my spine would manifest more as an electric shock or jab sensation. Then my GP told me that anything that will encourage blood flow will help to encourage nerve repair, so exercise, foot massages, etc. are all good for that. I've also been encouraged to massage the area under my jaw that is numb from my limited neck dissection, also to encourage healing of the nerves there.
47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014. Sadly has passed away, notified Jan 2015.
| | | | Joined: Sep 2010 Posts: 179 "OCF Down Under" Senior Member (100+ posts) | "OCF Down Under" Senior Member (100+ posts) Joined: Sep 2010 Posts: 179 | Thanks Seth for your post. 3 months post tx and i've started getting pins and needles / numbness in my feet. Good to know that its just side effects of chemo/radiation. Thanx again.
Minh
35 Yrs old 03/10 SCC T1-T2 Partial Glossectemy end March - margins not clear enough. While waiting for resection - cancer returned,2 new cancerous lumps Re-section End May & flap from cheek attatched. Margins clear. Mid June - 4 teeth out Mid July -32 Rads and 3 Cisplatin 6th Sept 10 Finished Treatment!!
| | | | Joined: Nov 2009 Posts: 212 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Nov 2009 Posts: 212 | I had peripheral Neuropathy and it was quite bad. Shortly after tx I even needed pain med to stop, feet were especially bad, it did get better over time, by 6 month-ish it was largly gone. Weird thing is after 15 months it is back a bit. I went for a swim in very cold water a couple of weeks ago and my hands hurt for days. I might be particularly sensitive to cold now. I was told that the peripheran neuropathy is a fairly common side effect of Chemo 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 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Jul 2009 Posts: 453 | Glad to have read this post. Steve is over a year post tx and often gets pins and needles in his hands and feet. Sometimes cramping as well. It seems to occur more when he drives for a long period. Never happened before treatment. I thought it may be a side effect of treatment but wasn't really sure. Will be asking his doctor about it next week at his 3 monthly checkup just to be sure. But thanks again for mentioning this as it sounds like what he is experiencing.
Wendy
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone No surgery Teeth removed 06/07/2009 radiation 13/07/2009 x 7wks chemo 15/07/2009 x 3 Cisplatin last TX 28/08/2009 25/11/2009 PET-lymph node activity. 08/01/2010 CT Scan-ALL CLEAR 03/03/2010-Peg removed 01/2013 left side of Jaw removed and replaced with pectoral flap. 23/12/2020 scan show lesion in tongue 01/2021 SCC stage 3 base of tongue diagnosed 01/03/2021 chemotherapy started.
| | | | Joined: Jul 2010 Posts: 27 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jul 2010 Posts: 27 | Thanks, Seth. I've been having the same "buzz" sensation in my legs. It started 2.5 months post-treatment when I was running. I first felt it in the back of my left calf. I've noticed it particularly when I look down. This was great to read.
Randy, Stage 3 tonsil SCC, node involvement, HPV-positive. 7 sessions of Taxol-Carboplatin, 35 rads finished 9/8/10. Post-TX PET and CT 12/1 showed "no metabolic evidence of residual or recurrent disease." Yay!
| | | | Joined: Jul 2010 Posts: 27 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jul 2010 Posts: 27 | Saw my radiation oncologist and a neurologist. It's Lhermitte's Syndrome, a rare, temporary condition involving radiation damage to the nerve sheathing around the spinal column that extends into the neck. Really good study on it here:
http:\\www.hindawi.com/journals/ijol/2010/907960.html
BTW, davidcpa, I've reduced my running to about 15 miles a week. Ran a 5K on Thanksgiving and went too hard; was worn out for about three weeks. Got lectured by doc. Have to make some concessions to the beating I took.
Last edited by randy58; 12-22-2010 08:04 PM.
Randy, Stage 3 tonsil SCC, node involvement, HPV-positive. 7 sessions of Taxol-Carboplatin, 35 rads finished 9/8/10. Post-TX PET and CT 12/1 showed "no metabolic evidence of residual or recurrent disease." Yay!
| | | | 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 took it real easy until appx my 9th month post and then had a renewed vigor and killer mental attitude.
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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