Multiple Myeloma Support Group

Well the doc said all they could do for me since I am 90 percent envolved in Myeloma is Velcade. So far it has made me tired and nausea. Little nueropathy in my feet and fingers. I did make a little blood for a couple of weeks. Lost a unit this last week. So far Velcade is kinda working on and off I guess. I'm also getting a few lumps in my skin. Don't know if it's from the Velcade or not. I will ask doctor this week about it. Never had the problem before.

Great news I'm back to makeing my own blood again. I jumped up over two units of blood. The Velcade is a miracle. So far I have great news with it. Yes you get the ocassional sickness and I do become very tired. If it continues to work for me I have a chance to have the stem cell transplant. We are hopeing that my new born grandson will be a match for me. So keep me in your prayers that Velcade keeps working for me. I hope to help others in the future with my treatments and progress.

After 6 months on Thalidomide, I was still at 50% so my doc put me on Velcade. After 3 months of Velcade, I was 98% involved, so no good for me! It didn't bother me much during administration, but left me with SEVERE neuropathy in my feet that is still really bad 7 months after stopping treatment. I guess I was not one of the one that would benefit from this treatment.

I just finished with 6 cycles of Velcade. My IgG numbers went from the 5000's down to normal. When I first started the treatments, my Onc also put me on 100 mg of Thalidomide a day and dexamethasone (can't remember the dose) on the day of and after my velcade. I couldn't tolerate the dex and so he took me off. He discontinued the thalidomide after my 4th round of velcade because my numbers were good and because I was having some pn in my toes and arms. The only side effects I seem to have had from the velcade was tiredness and as the treatments went on some nausea (very mild) and stomach pain--what I imagine an ulcer would feel like. I didn't attribute the stomach pains to the velcade until this week. The pains went away this week and it has been 13 days now since my last treatment. Also, my skin has been weird. The skin on my nose and chin feels like sandpaper and my hair has gotten thin (in my opinion, due to my skin changes). I'm looking forward to getting some energy back now that I am done with treatment.

I was told we are going to do up to 8 cycles of Velcade. That is if I don't have any severe side effects. If I can even out with the protein and I continue to make blood. We are going through with the stem cell transplant. My IGA levels were 3191 when we started and now they have dropped to 693 now they are back up to 745. My doctor wants to see them drop more than that. My onc monitors my IGA levels and not the IGG. I have a very rare form of Multiple Myeloma. She had just told me the name of it this week. I forgot already. This is what the chemo has done to me as well. I'm getting forgetful and it is very scary to me. I too get very tired and sick too. The nueropathy is becoming annoying as well. Although I do have some good news. I am makeing blood still. 13.8 was HMG this week. Yeah great news. My HMG has been low as 6.6 when it gets that low it makes you very sick and tired. Thank you for listening.

bump...for a question just asked
Dr O.

my husband has begun his 2nd round of velcade it has worked miracles he is in remission and the onc says that he should continue and put off the transplant he feels the velcade works as well as a transplant my husband has the 13 gene yes his skin is wierd too and he gets neuropothy and terrible gas attacks anyone else suffer from gas it almost feels like a heart attack

stonebrodge

Doug-

This is an article in the IMF newsletter interviewing a mm specialist about how the action of velcade is enhanced by the supplement curcumin-

http://beating-myeloma.org/article...

For those experiencing peripheral neuropathy here is the Dana-Farber regimen- second article on list-

http://beating-myeloma.org/article...

Enhance conventional therapies and side effects.

David Emerson
http://beating-myeloma.org/

Hi everyone, I have been on Velcade and Dexamethesone for 15 months now. I didn't have any real side effects in the beginning, maybe just feeling a little crazy from the dexamethosone and not sleeping too well while on it. But now that 15 months have gone by I do get tired after treatment and usually come home and sleep a couple of hours. I did get in normal range for about 2 cycles now I am above normal my IGG is at 2200. The doctor says not to be to worried because I am not spiking very high. So, I am not going to worry about it right now. I have thought of stem cell transplant but I am scared of it, I don't feel sick and I think that I will get very sick if I do the traansplant so while I'm feeling OK and can still do some fun things on my 1 week a month off of treatment I am going to live my life. I hope everyone here has great success with treatment. Wish I knew where and how I got this cancer in the first place. They say exposure to chemicals but I have no clue what chemicals they talk about. That's not what my doctor says but that's what I've read. Well have good happy days everyone and my prayers are with you all.

More info on velcade- comments, articles, newsletter, etc

http://beating-myeloma.org/subject...

David Emerson
http://beating-myeloma.org/