Cancer Survivors Network

I have severe hearing loss from cisplatin

There are three major groups of nerves in the human body.

1. The peripheral nerves that carry information to and from the limbs.

2. The nerves that supply the bowels and other internal organs.

3. The nerves of the head which connect to the ears, eyes, taste buds, etc.

Nerves in any or all of these major groups can be affected by certain chemotherapy drugs.

Nerves are vulnerable to many kinds of damage. They can be damaged by certain cancers. This may be caused by the cancer cells producing a particular kind of biological agent that interferes with the function of the nerves.

Sometimes, they can be damaged by drugs used in chemotherapy treatment. The chemotherapy drugs that most likely cause nerve damage are the vinca alkaloids, platinum drugs and the taxanes. These drugs have the potential of interfering with nerve function.

You may notice symptoms in different areas of your body depending on which groups of nerves are affected.

Symptoms in the hands and feet happen when peripheral nerve damage happens. The first sign of nerve damage is usually a feeling of tingling and numbness like what you experience when your foot goes to sleep after you've been sitting for a long time in an uncomfortable position.

If the problem progresses further, it often produces weakness of the muscles, resulting in loss of strength at the wrist or the ankle. You will notice difficulty in doing up buttons and picking up coins. You may notice that you will tend to trip while walking up stairs or dragging your feet and tend to have a wide-based gait. In severe cases, the weakness may be so severe that you will need a wheelchair.

When the nerves in the bowel are affected, constipation is the earliest sign. In a few people, the abdomen becomes bloated with a distended bowel that is basically paralyzed.

Some of the nerves in the head can also be affected. Platinum drugs can affect the auditory nerve and cause loss of hearing and tinnitus(ringing in the ears). Vision can very occasionally be affected.

A lot depends on how quickly your cancer treatment can be stopped. Sometimes the need for treatment is more urgent then the residual nerve damage. Sometimes, the balance between benefit from the drug and the side effect of nerve damage is more finely balanced.

Once treatment has been stopped, recovery is usually slow. It may take months to get even partial improvement and often there will be some residual impairment, either a motor weakness or a sensory numbness or both. Recovery is slower in the feet and legs than in the hands and arms.

There is no specific treatment that enhances nerve recovery. There are no drugs that will directly stimulate nerve regeneration or recovery. If you have severe and prolonged pain, then the pain may require narcotics often combined with antidepressants. In some cases, certain types of anticonvulsants would be helpful.

Treatment options are subjects that you should discuss with your doctor, so you have accurate expectations of potential benefits and side effects.

Chemotherapy drugs that can cause neuropathy. NCI lists these as most likely to do so:

Cisplatinum (Platinol)
Carboplatin (Paraplatin)
Vincristine (Oncovin)
Vinblastine (Velban)
Etoposide/VP-16 (VePesid)
Cytarabine (Cytosar, Ara-C)
Hexamethylmelamine (Hexalen)
Suramin
Paclitaxel (Taxol) and Docetaxel (Taxotere)
Other medications reported to contribute to neuropathy include oxaliplatin (Eloxatin), gemcitibine (Gemzar) and thalidomide (Thalomid).

I have been reading this posting progression and finally decided to post a response. I'm simply amazed at how much these chemo drugs and radiation affect us a long, long time after treatments. I'm not in the medical field (are you gdpawel?) so clueless on the specifics of drug interactions and side affects. I know my body and it's telling me 1-1/2 yrs since my last treatment (had chemo and radiation - external pelvic) I'm just not the same as prior treatments.

When I ask my oncologist on chemo and radiation (2 separate docs) neither one will fess up on the side affects I'm feeling.....some very minor tingling in my hands, fast bowels, lower back pain and now pain going down my one leg, diminished hearing and vision, just to name the major ones. Really I'm not complaining, but sure nice to read up with your posts on how these drugs can truly affect us. When my body changes I like to know what's going on, don't want to have the thoughts of "cancer is back". Believe me, just knowing this is all I'm dealing with, I can handle, as hearing the word "cancer" again has to be the worst of the worst.

Amazing how we just learn to live with the side affects, as the alternative prognosis of more cancer pushes us over the edge.

Thanks for posting....
Jan

Jan

I was a spouse/caregiver to a cancer patient. I became intensely interested in cancer medicine by virtue of working through, enduring and surviving my wife's illness. The experience helped me to gather knowledge by virtue of voluminous reading and hundreds of hours of past and ongoing personal communication with noted authorities and experts in the field. I still keep in touch with many surgeons, medical and radiation oncologists.

As a cancer patient advocate, I've been interested in and studied the aspects of cell function analysis (harken back to my college days studying biology) for a number of years, like anyone would have an interest in molecular science or biological science. My point with respect to cell function analysis is to educate patients (even doctors) that such science and technology exists, and might be very valuable.

If you have any interests furthering your knowledge about cancer, here is a non-afilliated, PhD-oriented cancer information website.

http://cancerfocus.org/forum/index.php?

About Taxol.

http://cancerfocus.org/forum/showthread.php?t=2871

Greg

Nice to gain experience from each other, has always been my thoughts during this cancer journey. I'm all ears and eyes when I was first hit with the idea of having cancer and today, so much more up on the disease.

I'm assuming you as a caregiver has kept you very busy. Is your wife doing okay?

Thanks again and I'll checkout your sites listed...
Jan

P.S. I was diagnosed with uterine 3C 2 years ago this month. Had complete hysterectomy, 6 sessions of chemo and in middle of chemo sessions 33 rounds of pelvic radiation (external). Today I'm NED as really up on the proper ways of eating, exercising and mind altering therapies.

I have been on the combination of carbo & taxol since 12/3 and have noticed many changes in myself, including, but not limited to, numbness and tingling in my hands and feet, ringing in my ears and my vision is blurry. It actually seems like my glasses are always dirty but they are not, it's my vision that's impaired. Also, bright sunlight hurts my eyes. I'm having my 5th infusion (21 days cycles) tomorrow and my 6th one on 3/21. I'm hoping that when I have my PTscan the end of March I will have improved enough to get a reprieve from chemo. I'm also hoping that the side effects will dimish with time. I no longer have any reflexes in my arms or legs, as when the dr. uses his little rubber mallet I no longer "jump". Hopefully that will resolve itself also. I have metastatic melanoma that was diagnosed in November 2010 and so far the treatments have helped reduce some of the tumors and spots. Of course new ones cropped up on the last PTscan, so those terrible cells have found a new home in my T9 vertabrae. And I still have 2 tumors in my spleen, but the chemo has chased it from my lymph nodes and liver. So I guess the side effects so far have been worth it.

Ladyjo,

You are not alone. We all have something in common, support each other and share information. I had 6 sessions of taxol/carbo last year. My eyesight has been slightly affected but the biggest problem is the pain and numbness in my feet. I take vitamin B6 and neurotin and it helps a little. I was diagnosed with ovarian cancer in June 2010 and my last chemo was Nov. 2010. I had surgery in Jan., hysterectomy and debulking. There are microscopic cancer cells left and I have to have 2 more chemo treatments. I need to decide if I will have taxol/carbo, a reduced dose of taxol or another drug in place of taxol. I don't want the numbness to get worse. Some of my toesnails and toes are turning a blackish/blue color but I don't know if that is from the taxol or not. Good luck to you with your treatments.

This thread is several months old but I wanted to thank you for this information. I had mild neuropathy during Carbo-Taxol chemo that got worse after. It started with mild numbness in hands and feet but has progressed to joint pain and both of my arms going numb. I've been tripping a lot, esp. on stairs. I didn't know until I read your post that tripping was also a side effect of chemo. I've also had pain and tightness in Achilles tendons which I knew was a side effect.

I'm 11 months past the end of chemo. At this point, I'm afraid some of these symptoms may be permanent but at least (so far) they haven't progressed beyond what they were several months ago.

Sorry to read about your neuropathy and continuing well past treatments. Should consider myself lucky as my neuropathy was very minor and wondering if exercising helped. I've been my whole live a huge exercise fanatic and possibly the movement forced blood thru my body. After reading a few others postings, it could possibly be due to just nerve damage.

Hope with time you do get better. Amazing how we just learn to live with our aches and pains after treatments. As my doctor told me when I addressed some of my pains, AT LEAST YOU'RE ALIVE!!!

Jan

I finished 6 rounds of chemo (taxol, carboplatin, and avastin) in November and am still suffering side effects as well. Numbness in my fingers and toes, PAIN in my feet and calves, irritable bowels, and hearing loss (just got fitted for hearing aids late week)

I AM happy to be alive, but I can't shake off the dissatisfaction I have with the body treatment left me with.

I managed to dodge the neuropathy issue, but was taking measures during treatment to avoid it. After treatment neuropathy, I'm told, can be reduced with vitamin B6, Alpha Lipoic Acid and/or 20 mg of medical grade melatonin at bedtime.

I finished 6 rounds of Carboplatin, Taxotere in Oct, 2010 for breast cancer. I have not experienced neurothapy in my feet but have in my fingers to where I would wake up at night in pain to my elbows. It started right after my last treatment (10/2/2010)but only my fingertips - then it gradually spread over time to my hands and then just as it got to where I couldn't take it any more it began to recede just as gradually as it started. Now, 1 year and 4 months later my fingers still tend to tingle and go numb every now and then. I went to the Chiropractor thinking I had a pinched nerve in my neck but after a check up with my Oncologist - he told me thats it a very common side effect of the chemo drugs. He prescribed Gabapentin - I take it off and on and when I don't take it my fingers tingle and go numb alot throughout the day, when I do take it -it doesn't go numb at all. I also have been suffereing from chemo induced arthritis in my wrist and thumbs real bad. He didn't give my any medication for that becasue he said the side effects are not good. But one encouraging thing he did say was that it will go away in time. Just knowing that makes the pain in these joints easier to handle. Naperxon is the only drug I take for it but not every day - only when I can't take the pain anymore or when I'm babysitting my grandson so I can pick him up. It hurts to pick him up without it.
I use to be very healthy and exercised 3-4 times a week - that was before cancer (BC) Now my body doesn't feel like the same person. I'm terribly out of shape and can't seem to find the drive to get back into the routine. I have my energy back and for the most part feel very good- with the exception of lack of interest to work out and the abilty to lose those last 8 lbs (gained 20 after treatment due to steroids)

I have had six rounds of taxol and carboplatin twice. Halfway thru cisplatin (spelling) I quit. I do not know if I could do chemo again - a case of toughing it out through short term side effects is one thing, but my experience is that the changes are chronic, both to my body and my mind. I ride a daily roller coaster of fatigue, surrounded by mists of brain fog and waves of emotion. It is exhausting! I scold myself about not being grateful enough, but truth is, I am pissed. Pissed about the lack of validation from oncologists, pissed at not being given a true choice. Pissed at not listening to myself sooner. Currently working with naturopaths, a gyn onc, and exploring other alternative options. I keep a daily chart of body pain, food, sleep, poo, supplements, stress. I am trying to determine what works. I have worked all the way thru all the treatments - but am taking a year off starting in a few months. It's exhausting to try to function normally! I miss laughing more readily.

I can relate to being pissed. Cancer is nothing positive, but so negative and just zaps us.

If I'm understanding what you wrote, you're stopping chemo due to chronic health changes from the drugs? I had some side affects, but luckily I wasn't in overload with pain, etc. I just figured I had to buck up and do what my very trustworthy OB oncologist suggested. Then once out of treatments do more alternative type things to keep my whole body up and running to fight off the cancer.

I would have loved to not do chemo (as the type of person who never used drugs or did anything harsh to my body), but find another alternative treatments. Didn't feel comfortable with any of the options, so stuck with the Western treatments. You'll find many people who don't do chemo/radiation and are doing quite well. Just not for me!!!

Enjoy life, it has an expiration!!
Jan