Neuropathy

[apachejane]

Hello everyone,

This is my first time posting here and I'm glad I found this site. My mom was diagnosed with MM in January 07 after going to the hospital with pneumonia. She has been on chemotherapy up until about two months go and has severe neuropathy. I've done some research and it appears that two of the chemo drugs she was given (Velcade and Thalidomide) can cause this. Has anyone suffered from this or know of anyone that has? She is currently on morphine and it only works for a couple of hours. She is scheduled to see a pain specialist at MD Anderson in Houston next week. The pain is so bad she just cries. I hate to see her go through this and I'm trying to find anything I can to help the pain go away. Any information is greatly appreciated.

Thanks.

[brainman]

Hi apachejane,

I am very sorry that no one has replied to your request for information. I hope your mother has already found some relief for her pain. I know how helpless it is to see someone you love in pain and not have any way to help.

Do you have an update on her condition and treatment for us?

I will be thinking about and praying for you and your mother.

[apachejane]

Thanks for the response Jim.

Unfortunately, it seems that not too many people have gone through neuropathy this bad before, however, she has since seen a pain management doctor at MD Anderson who is experienced with this sort of pain. He put my mom on several medications and I'm happy to report that she is much better. The doctor told her it could take up to 18 months before she was pain free but she seems to get better day by day.

She also has since had her last biopsy and her MM is in remission. She's on a maintenance steriod now.

Thanks again for your reply.

[brainman]

Apachejane, I am glad that your mother's MM is in remission and that her pain is being addressed. I have Houston connections as well... I worked at Hermann Hospital as a chaplain in the late 80's.

[stanky_williams]

Hi,

I am a 27 year old male with MM (I know really young). I have bad neuropathy both legs, and have had a terrible time finding anything the helps. High dosed of pain meds don't help at all (they work for my tumor pain, but not the nerve pain)-- neurontin, lyrica, tonic water, all kinds oc vitamins-- nothing really worked very well. I have seen 5 different pain specialists at very good hospitals (Johns Hopkins, St Vincints, University of Arkansas, Georgertown) and no one found anything that really worked----

Finnally I have found something what is working--- spinal cord stimulation--- I have only had the implant for about 1 month so it is not working to full potential yet, but it is already taking away about 70 % of my leg pain-- sometimes it takes 100% of the pain away-- and I expect that once it is scared in place in another month or two that is will almost always take close to 100% of the pain away-- I gone from 120 mg of oxycontin a day to 40 mg in thee weeks-- I hope get off it completely---

On the down site, It is controversial if people with the implant should have MRI, which is obviously an issue for MM patients (PET and CT scans are ok), but my leg pain was so bad that is was really messing up my life-- so far I feel like it has saved my life.

I have found that a lot of pain specialist don't really know about it, or they are a bit shy because it is not a standard treatment---- so it is a bit scary---and if you do some reading it is obvious that you must be very careful that you have a good doctor do the procedure because there are a lot of people that have problems-- but I did my homework on my doctor and feel comfortable---- but so far-- I love it


Feel free to email me with any questions: jmw_Williams@yahoo.com

Good luck and God bless

[apachejane]

Mr. Williams,

I'm glad to hear that the spinal cord stimulation is working for you. I've seen my mom just sit and cry because she was in so much pain. The implant was going to be next if she didn't respond to the medications. Thank goodness her pain is almost gone. She still has severe numbness in her feet though which makes it difficult for her to walk. Her pain doctor told her it could take up to 18 months before she got completely better.

After the holidays, we plan to schedule a consultation for a bone marrow transplant. My mom was a little hesitant but I think she realizes it's the right thing to do.

My prayers go out to you and your family.

Have a blessed holiday season.