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/therapies/curcumin-in-multiple-myeloma

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

http://beating-myeloma.org/article?page=2

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/velcade

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

Hello Doug -
I had Velcade when it was first 'new' down here in Australia and went for 4 rounds. Unfortunately the side effects became horrible and I had to stop. I ended up hospitalised for a couple of months, lost 50kg (fortunately I was overweight to start!), and landed in a hospice. When I finally went home - after a month - most thought I was going home to die. Due to my wonderful husbands care, I gradually regained some appitite and started eating once again. Here I am, three years later, and although my paraprotein went up to 90 when I stopped the Velcade, I was able to start Revlimid two years ago and haven't looked back since! Now my paraprotein is only 6!!
The think with all of these drugs is that they are so individual - what works for one person is useless for another. Hang in there until you find the drug that works best for you!!

had a bone marrow transplant in 05 done great,3 years remission,then relasped in nov 08,started velcade and dex just finish my first cylce,start another one on the 26th,i am very tried all the time but i found my eating is starting to ge alot better,but the pain is still really bad sometime...some day are good others not ,do not no much about this drug i really,need to learn to ask more question, but sometime i dont; like to hear the answers i am going to be given...but latley i been checking it out. i no there is neg and pos...to thing but .i just need to let it takes it course ,if anyone has anything they can tell help me no about this velacade i would really appericated ,thank you and god bless

Sorry Doug, but my experience with Velcade has been the opposite of most of these other people. I was on it for about 5 cycles before I ended up with the worst headache I've ever had. I was promptly put into a major cancer hospital in this State and it took a week before the headache became bearable - but it did not go away. Of course, the Velcade treatments stopped. I was then transfered to my local hospital where I stayed for a month because along with the headache I could no longer eat, I was losing weight very quickly and everyone thought I was dying. Ultimately I lost 50kgs - which is huge! But thankfully I was overweight and had the weight to lose! I was then transfered to the hospice - to try to get the pain medication right as well as to get me eating again and I stayed there for almost a month. I decided that if I was dying I didn't want it to be in a hospice and discharged myself home - all the staff are still surprised when they meet me in the street as they all thought I was going home to die!!

Fortunately my daughter and husband were able to devise a system that got me eating again and gradually, over 3 months, I started to regain my health. I was totally dependent when I came home from hospice - to the point where we had a comode at the end of my bed and my husband had to lift me onto it when I needed to use it -- I couldn't walk to the loo!! That became my first challenge and goal - to walk by myself to the toilet! It took me almost a month, but I finally made it. I won't go on with all the trauma I had to get back to being semi-independent, but it was the Velcade that nearly killed me! I was off all medication for almost 6 months, but my paraprotein kept creeping up until it got to 90!! Something had to be done and so I was granted - on compassionate grounds - Revlimid. That has been a whole new story, but the outcome has been that Revlimid has been my Saviour!! I am now alive - 2 1/2 years later and have a near normal quality of life. Of all of the chemo drugs that I have tried - VAD, Cyclophos., Thalidomide, Velcade, and Revlimid -- the Velcade was the worst for me. Yes, it brought my paraprotein down and kept it there for 4 months but I had a whole heap of side effects including severe painful neuropathy in my hands, nausea, constipation, and the mother of all headaches, extreme exhaustion, pain in my legs when walking, etc. I know that Velcade is a miracle drug for many people, but it was certainly NOT for me! Cheers, Cath