| Joined: Apr 2012 Posts: 32 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Apr 2012 Posts: 32 | Yes this is one of the gifts that Cisplatin keeps giving, side- effects. My tingling and numbness is annoying. I too find my hands are pretty weak. Once in a while my foot drags. I am also very cold and must wear lots of layers. Hope it does go away some day. Ken
48YO M, hlthy, xsmkr(quit 14yrs ago), mod drinkr 1 mo sore throat w/neck lump 3/12 SCC tonsil, lym nodes 4/12/12 rad tonslctmy, mets in lymph nodes 5/8 PEG, 5/10 PORT 7/3/12 Last Chemo (Cisplatin)| 7/10/12 Last RAD | 9/6/12 MRI=No New Cancer BSA Scout Ldr w/strng desire to live & beat cancer
| | | | Joined: Apr 2012 Posts: 111 "OCF across the pond" Senior Member (100+ posts) | "OCF across the pond" Senior Member (100+ posts) Joined: Apr 2012 Posts: 111 | Brendan, I'm so glad you are finding things a bit easier. Sally
Dx 10/11 51yrs LBOT Stage 4 2nodes HPV16+. Non-smoker mod alcohol. 10/11 Induction chemox2 (Docetaxel, 5-Flu, Cisplatin) then Cisplatinx2 IMRTx30. Ended 01/13/12. 12/07/11 RIG. RIG removed 05/05/12. 4/12 CT scan clear. Visual scope checks clear as of 10/13. Learning to live with eating challenges.
| | | | Joined: Jul 2009 Posts: 38 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jul 2009 Posts: 38 | I had numbness on the bottom of my feet post-treatment. Doc did the poke with a pen test and sort of wrote it off. Three years out and it has improved but I still feel it. And the hard to stand from sitting, I still have to pause when I stand. Between the chemo, rad, and surgery, it did a number on my already shaky (pun intended) sense of balance.
Mark BOT Squamous cell, stage IIIa
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | I have severe neuropathy since 2009, and was even paralyzed from the waist down, and could not walk for 10 months. In severe cases, it can effect the organs. I have optic ischemic neuropathy too in my left eye causing complete blindness in it, and almost the other. The neuropathy is my major complaint, and still causes 24/7 pain, numbness, loss of feeling, sensation, movement, muscle loss in the toes, feet, calf and hamstring, and fingers too. I can't drive, stand long or walk that far..a block or two. There severity of neuropathy..chemo induced.. there are 20 different types neuropathy, depends on the type of chemo given, the amount given, duration, frequency, and underlying Medical conditions or other medications that may contribute to netve damage...diabetes, alcoholism...most neuropathiex are resolved after time, but some can be permament.
There is not much really to be done for it, and each person is different as far as some therapies, medications, and vitamins. I used some prescriptions, which I did not like them since they are basically antidepressants or antiseizure medications. Docors rell e I'm better off without. Others have success with vitamin b6, glutamine powder. Accupuncture, PT...to name a few.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | There is a nerve test, EMG, Electromyogram, that can test for nerve damage. I had it done, and it's like getting stuck with an electrical cattle prod 200 times lol. The results, I have nerve damage in my hands, legs and feet. Like I didn't know that.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 | This is all quite interesting - and disturbing - to read. The latter especially in your case, Paul.
I'm having another strange archipelago of symptoms/side effects... don't really know what to call them. Beginning about this past February my hands, specifically the thumb and first two fingers, went cold, numb and tingly. To make a long story short I've had the usual battery of tests - first those delightful nerve conduction studies that Paul speaks of, then an MRI of the cervical spine. Result: no nerve or spinal damage. For which of course I'm grateful.
Yet the problem persists. Most of the time if feels as if there are hundreds of tiny pinpricks in my hands and radiating up my arms, sometimes to the shoulders. The fingers are always cold, sort of the halfway feeling you get when you've come in from extreme cold and your hands are beginning to warm.
I should add that this isn't painful. But it's damn disturbing, and since both my neurologist and my regular MD have no answers for me, quite a puzzlement.
I am 3 1/2 years out from RT and I had no chemo but I did have a neck dissection. No idea what of any of this may have contributed to it. I also get lightheaded from time to time when I try to stand up. So maybe it's a circulation problem.
Sure is weird! Any thoughts appreciated.
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 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Oct 2012 Posts: 118 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Oct 2012 Posts: 118 | Have you checked your glucose lately?
Bette/CG to husband Reggie 66
dx 1: SCC Soft Palate (12/06) tx: chemo and rad
dx 2: SCC 6 cm tum rt. vocal chord (12/09) tx: total laryngectomy with stoma, 2 nodes
dx 3: SCC 4 cm tum BOT (10/16/12) Tx: partial gloss w/ mod deck dis 4 nodes incl. part. pharyngectomy
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | Yes... I was thinking the same thing... ;o) It could be related to diabetes or poor circulation. hopefully not... but do have it checked.
Last edited by Cheryld; 11-28-2012 09:35 AM.
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: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | David, I was going to say diabetes like mentioned, which I have, and have the same numb cold feeling in the legs you describe, like having frostbite. I also have anemia, which makes you feel cold too.
Ken, after holding off so long...3 years almost, I'm finally going to see a pain specialist tomorrow that I was referred to see by my RO team. Will probably prescribe Neurontin, and see what is new with treatments.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Oct 2012 Posts: 118 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Oct 2012 Posts: 118 | Something else I should have mentioned. The thyroid could be the culprit. It tends to make you cold especially in the extremities. Reggie was like that until they got his hypothyroidism under control.
Bette/CG to husband Reggie 66
dx 1: SCC Soft Palate (12/06) tx: chemo and rad
dx 2: SCC 6 cm tum rt. vocal chord (12/09) tx: total laryngectomy with stoma, 2 nodes
dx 3: SCC 4 cm tum BOT (10/16/12) Tx: partial gloss w/ mod deck dis 4 nodes incl. part. pharyngectomy
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