How many people have ended up with Chemotherapy-Induced Peripheral Neuropathy (CIPN) after treatment? David

[england58]

[Cllcanada Top Poster CURE Hero]

Caused by vincristine...I have difficulty walking, signing my name, doing up buttons, typing on a keyboard...now in month 3 with little change... it is expected to last much longer.

Tingling and loss of touch in my hands, but not my feet... I have also experienced moderate autonomic neuropathy. Heart problems and lack of bowel movement...but this seems to be subsiding a bit...

Dr. Hamblin, a CLL expert, suffered from extreme neuropathy post treatment, worth reading his blog... there are several posts...

mutated-unmuated.blogspot.c...

[anaturallearner]

I began to get tingling in my finger tips after the first treatment, and it progressed to the pads of my fingers with the second so the vincristine part of the treatment was stopped. The fingers went back to normal within a week or two and I have not had problems since (approx 6 months so far).

My doctor tell me about the neuropathy side effects and I had to mention it after both treatments. I think we patients need to read up and stay informed - that's what I like about these forums.

Beverley

[england58 in reply to anaturallearner]

Hi Beverly glad to her your neuropathy has cleaned up. I have obviously since been diagnosed found out more information and I am now up to speed.I also enjoy the forum. Thanks David

[jangreen]

Hi I have neuropathy in my feet. I still have feeling but fail many of the pin prick tests though not all.I take100mg Pregabalin in the morning and 125mg at night. I also had Physo which I found very helpful. I used to, before chemo, walk with the ramblers about 10 miles appox every week. Now I can only manage about 6 miles at my own pace every now and again. I have been told that its not cure but management. My consultant was not very helpful and seem to deny that chemo could have had this effect and I had to push to get an appointment with the pallative care dept where I have received very good care and treatment.

[england58 in reply to jangreen]

Thanks for your reply I found it very useful. I too seem to have waited a long time to get to the neurologist. I am waiting to start physio in a couple of weeks.

Thanks David

[jangreen in reply to england58]

Hi although the wait is frustrating its been worth it for me and I hope it will be for you. Good luck.

[joycecanada]

I had "extreme" neuropathy after Oxiliplatin for colonrectal cancer almost 7 years ago. The neuropathy was so bad in my feet that I was unable to walk! The good news is that the neuropathy lessened as time has passed and I now am left with "manageable" neuropathy i.e. I can walk but have constant pins and needles feeling in my feet. Unfortunately Chemo is a two edged sword....damned if you do, damned if you don't! In my case the neuropathy is a small price to pay for surviving.

[england58 in reply to joycecanada]

Thanks for your reply. Like you said it's a two edged sword, I am in remission and it's early days with neuropathy with me. Hopefully it will get better with time.

Regards David

[Hidden in reply to joycecanada]

My husband was given the same drug for colorectal cancer. He finished his treatment Sept. 2015. He is not feeling "normal" - not much energy, tired. Will his energy level increase and will he feel "normal"? Any information, would be greatly appreciated.