AnonymousNovember 26, 2007 at 11:26 am
Hi everyone it has been a while since I have checked in. I have been doing very well with my CIDP it has been almost 3 months since my last IVIG treatment and that is the longest I have ever gone so I think I might be in remission. I found out a few weeks ago that they found something suspicious in my 6month cancer check up. I had a breast biopsy done on Friday and should know Thursday if my cancer is back. Question every time I have surgery my CIDP gets worse except when I was getting chemo the problem is I have a hard time thinking about chemo again cause of what it does it makes me feel so sick but my CIDP goes away while on chemo my family does not want me to do chemo again and try more healthy life style like diet and other things I am scared cause I am so torn as to what would be the best. How my body fight cancer with a suppressed immune system and it can apparently did not work the first time if in fact it is back again. My chemo was in January 2006, so it has not been quite two years. I would like any info that might help me make the right decision. Is there anyone reading this have had cancer with CIDP or GBS?? I know I am not the only one I just can’t believe this is happening again then again it might turn out to be nothing. Thank you for your support. Sorry for such a long note.:confused:
AnonymousNovember 26, 2007 at 11:38 am
I am currently getting chemo for breast cancer and I have had CIDP since May 2006. The chemo they are giving me (adriamycin, avastin and cytoxan) have helped my CIDP immensely. I am hoping that it puts me in remission. I have gone from walking with a walker to being able to walk around our house without a cane.
I wasn’t clear from your posting, were you saying your CIDP came back after the chemo? What kind of chemo did you get previously?
I will pray your biopsy comes back negative.
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AnonymousJanuary 18, 2007 at 9:51 am
Just found this Board and am happy I did. I was diognosed with CIDP 16 months ago and have some questions that I can’t seem to get an answer to, I’m hoping that I can get them here.
How do you deal with the pain and swelling in the feet? I’m on 3600 mg of gabapentin a day, which is ok for most days but some days the pain is a 10 on a scale of 1 to 10.
What type of socks and shoes are comfortable to wear? The ones I’m wearing now cause pain in my feet after about 3 hours of having them on, it seem that my feet get extremely hot which causes the pain.
Is there a specialist for CIDP in the Chicagoland area or the midwest?
Any type of help will be appriciated.
AnonymousJanuary 18, 2007 at 12:00 pm
I care for my daughter, who has had cidp since October ’05. She has the same problems with her feet as you. I found these to be the only shoes my daughter can wear – she has been barefoot for over a year as shoes have been a BIG PROBLEM. We found many styles at a local department store – best thing she likes is that they are lightweight, and breathe. Also, no shoelaces to tie. I know they are not professional looking for the office, but the black ones matched with black (diabetic) socks don’t stand out too much. Many of the nurses at the infusion center wear them. To get quick relief from the burning pain that prevents my daughter from sleeping at night, we discovered that wrapping her feet and/or hands in cool wet towels gives immediate, temporary relief – you might give it a try. Here’s the link for the shoes –
You have found a great board – there are many caring members here that can give you additional information based on their experiences.
Hope some of these tips are of help to you.
AnonymousJanuary 18, 2007 at 5:17 pm
Welcome first off.
Secondly, I don’t have the same problems as you as far as constant foot paion, but I wonder if all cotton socks would help at all for the hotness. We used to buy them for our oldest son- he does not have CIDP- but his feet would get extremely hot. All Cotton socks did the trick for him, since cotton allows your skin to “breathe.” However, you have CIDP which adds a completely different problem.
I have CIDP and live near South Bend IN, about 1 1/2 hours from Chicago. I was referred to the Cleveland Clinic to Dr. Tsao by my brother-in-law, who is in the medical research field. Dr. Tsao is a neurologist. He seems to be a great doctor and resource for CIDP. There was another doctor who has more experience; however, he was about a year’s wait. I was in the office of Dr. Tsao in less than three months. I am not directly under his care now, as that drive is way too long. However, he set the course of action to guide my local doctor, and my doctor now refers all questions to him. Dr. Tsao is a very personable/knowledgeable man. I know the Clinic is about a six hour drive for you from Chicago. I am sure there are experts in the Chicago area. If you are interested in this long drive, tell me and I can find out more info for you.
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