CancerCompass message board discussion started by Delia on 5/3/2005 http://www.cancercompass.com/message-board/message/all,2013,0.htm Wed, 08 Oct 2008 00:00:00 GMT Wed, 08 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I'm trying to find out if people treated with Taxol & Carboplatin are experiencing permanent loss of sensation in their fingers and toes and if so, what their regimens were. My oncologist is suggesting 80mg/m2 Taxol every week for 3 weeks with Carboplatin (don't know what the AUC # would be) on the first week and the 4th week off for at least 4 cycles. He's said 2 different things about the neuropathy issue and now he won't answer any more questions until my next appt. I'd like to hear from people who have had treatments and experienced the neuropathy. Delia Tue, 03 May 2005 00:00:00 GMT Hi Delia: The handful of friends old and new that I have shared observations with having gone through chemo and or radiation as I did, pretty much say the same thing. It doesn't seem to matter much what kind of cancer or chemo/radiation any of us went through, we all experience a loss of response and control in varying degrees. Some more, some less. Problems with your arms and legs seem to be the norm to most everyone. Fatigue is an ongoing problem. Irrational aches and pains. Skin disorders such as itchy patches or rashes on an arm or arms, loss of concentration and other mental health issues. Each person is affected in different variations of the symptoms mentioned, and then some. Now for the funny part. Most of the medical field does'nt have a clue what to do with us once the cancer has been put under control. It is basically a whole new field of medicine which is aftercare treatment for people who have experienced cancer and its treatments and who are now living much longer than we used to. Never let a medical technician whether it is a doctor or anyone else tell you that you shouldn't feel like you know you are feeling just because they can't find a reason for it. What you can do is what I did. Make sure that your symptoms are put into your written report records when you have your follow up visits. Don't let them downplay how you are feeling. I was assertive enough with my doctors, who by the way were excellent when it came to killing cancer, to make sure that they documented my after treatment symptoms. Now, lo and behold into my third year since treatments had started, and two years after treatments, the medical profession is recognizing the fact that thousands of cancer veterans such as myself can't all be imagining the same aches and pains, fatigue, etc. For the time being, we all have to realize that to some degree our lives are changed forever, and some things will never be the same, but alot of life will be much better now. Check with who is treating you now and see if they have a specific program for after treatment care. If not then I suggest you go to cancerfighter.com or contact Cancer Treatment Centers of America in Zion, IL. or Tulsa, Ok. It will be a rough ride for awhile but nothing that we all can't learn to deal with. Good fortune to you and your loved ones and be thankful for the time this disease has made us be with our families. Robbie Robbie R. Tue, 07 Jun 2005 00:00:00 GMT We were particularly concerned about this issue because my mother is a polio survivor (polio is also neurotoxic). We found a great neurologist in San Francisco (Dr. Miller at CPMC) who said that the polio and the Taxol work on different systems (motor vs. sensory nerves), but to expect that some amount of peripheral neuropathy from Taxol might be permanent. My mom finished her treatment three or four months ago, and her hands and fingers have stopped being numb, but her toes are still somewhat numb. If you want to read scientific papers on the subject, I can suggest going to PubMed and looking up the review article by Nowak (search for "taxanes" and "Nowak"). You might also be interested in my discussion of the subject at www.breastcancerdecisions.org . It discusses the pluses and minuses of Taxol in general, not just the neuropathy issue. Good luck. Daughterandmom Thu, 01 Sep 2005 00:00:00 GMT