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I need help from my knowledgable friends!


natalie

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My mom has experience severe numbing in her fingers and feet from the carbo/taxol treatment. She's tried two different nerve drugs that are suppose to help with the numbing but it has not. The doctor said that if it didn't get better by tomorrow (which it hasn't) that she would put her on a new chemo treatment. She said that she was going to give her Gemzar probably and only Gemzar because all the other chemo treatments have side effects of the neuropathy. I would rather have my mom treated with 2 chemo drugs as I have read they are more effective than just one. Has anyone been taken off a chemo treatment for the same thing and if so, what was your next protocal?

Thanks for your help. My mom's appt is tomorrow so prompt replies are very much appreciated!! :D

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From what I have read bothe of those chemos can cause peipheral neuropathy. ( carbo/taxol) I had this develop during my second round of chemo after I had surgery, the doctor stopped the chemo so I missed the last doses. Some of the neuropathy symptoms went away, like I don't just fall down any more, but the weird feelings in my feet stayed but so did I so I figure small price , I am alive to have those feelings. Sorry I did not take those same chemos so I don't know if I was of any help. I took Cisplatin and VP 16.

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Numbness is a common side effect from chemo treatments. I agree with you that 2 drug combinatons are more effective than single agents. It isup to your mm, if she willing to put up with the numbness for added beefit, or not. I would discuss this with her and then tell the oncologist her wishes. There are a couple of things I know helped my mom....

1. A high dose complex B vitamin, found at any drug store/vitamin store.

2. A drug called elivil from the oncologist (perscription), given in low doses has been shown to decrease numbness in the hands and feet of chemo patients.

You can really do both...ask fr the elivil, and get complex B vitamin, and take both everyday, to see if it helps her any...sometimes it taks up to 2 weeks.

Jonathan

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Lucie took a similar combination of chemo and experienced the numbness. We decided to live through it. Her fingernails and toenails turned black also. Now she is recovering the feeling and the color. You have to decide between the side effects and the benefits of the chemo. Tough call sometimes. Don

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Hi Natalie,

my buddy had the same thing, in fact, at the onc today, beings he has started another round of chemo, one of the side effects of Taxotere is numbness of fingers and toes and he said to the dr that he still has numbness in his toes from the last time which has been some time ago.

I don't know how serious it can be but being the onc for your mom is considering changing the chemo, it sounds serious.....two chemos they say are better then one, but sometimes there is no choice. my buddy can only have one chemo now because of his weight loss and weakness.....

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Natalie,

I am currently getting Taxol/Carbo every three weeks. I was getting it once per week for 8 weeks. My right foot was a little numb, but that was it. Now that I am on a more aggressive treatment, my toes and fingers did get really numb after my first treatment 7-23. It has now been two weeks and it has subsided quite a bit. My lips even got numb for a couple of days. I did mention it to my onc and she said we can monitor it. It all depends on if your mom can tolerate the feeling of the numbness.

I wish you mom the best, I'm sure her doctor will find the treatment that best works for her and is tolerable.

God Bless and praying for a cure

Karen

*************

Dx 3-03, 3a-b??? 8 weeks taxol/carbo 4-03 to 5-21-03, 33 treatments

radiation 4-03 to 4-15-03 carbo/taxol every 3 wks Start 7-23

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Well, I just got back from the hospital and the oncologist decided to postpone chemo today because she wants the results from a brain MRI that they scheduled yesterday. My mom has been having some headaches so she wants to see if she has more lesions or if her existing ones have grown. She said she will get the results on Friday and from there she will decide whether to schedule a chemo appointment for the following week or not. We have a neurology appointment for Aug 20th, so I asked our oncologist if she could expedite the appointment to sooner if my mom does in fact have some brain lesions that need addressing (I've expressed interest in Gamma Knife). She said that we could see a neurosurgeon, but that it wouldn't serve much purpose...then she trailed...I was afraid to ask anything further. The doctor gave me the impression that if they found more lesions in her brain that they weren't going to do anything any more at all...so right now I'm trying to figure out what to do proactively. I'm hope it's okay to postpone the chemo for a couple of days. What do I do here? If we do a clinical trial, we do it all on our own (the HMO we are with doesn't have any clinical trials for my mom) and it scares me because what if I pick the wrong one? Should I pick a Phase III trial as opposed to a Phase I or II? Since they are just giving her palliative care there at the hospital, I'm wondering if I should recommend to my mom to just go straight to a clinical trial in hopes of a CURE as opposed to PALLIATIVE.

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Oh! I forgot to say Thank you! Thank you to you all who responded so quickly, I really appreciated. Now I have another favor...can you all say prayers that my mom's MRI comes out clean? As all of you have experienced, the anxiety of this is just so overwhelming.

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Natalie,

I wish I could give you fantastic advice, but the best I can offer is my thoughts and prayers, and (hopefully) some comfort in knowing that you're not alone. My mom has a cat scan 8/8 and brain scan 8/25, and that will determine further treatment (if any). It is terrifying.

I do know this: Phase I clinical trials are for just a few folks, Phase II are for when Phase I has appeared to work and includes a few more people, and Phase III is for a lot of people because Phase I & II have worked (or shown promise).

You might contact University of Pittsburgh Cancer Institute (800-237-4724). I believe that a while back I read that they have a hotline to help with questions. Also, American Cancer Society (800-ACS-2345) has a hotline that can help with questions and they have research oncologists on staff that can do research for you if you request it. Both services are free. ALCASE (www.alcase.org) has some good info as well. Another web site I really like (done by a cancer survivor) is www.cancerguide.org. It has excellent links and info.

I wish I could do more...but I'll keep praying for you and your mom.

Terre

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Thanks Terre, Donna, Jonathan, Don, Karen and Peg! I appreciate all your feedback and response. This cancer thing is so horrible. I feel like a mental case...one day I'm feeling great and positive and the next, a doctor can make me just come crashing down. They always want you to be "realistic". Just because I don't want to talk "realistically" doesn't mean I'm naive, I DO understand the situation, I just opt for "hope". I'm going to do everything in my power to help my mom beat this

$%&**& thing. Now I'm mad. Watch out cancer, here I come!!!

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