Velcade

My husband was diagnosed with MM April, 2003. He had 400 hrs of chemo and a stem cell transplant Sept., 2003 and in Sept. 2004 went into remission. Got the result on a blood test that he had taken in July and his protein level had risen from 0 to 1.1 but that was in July but had another blood test today so we won't know how much more it has risen until we get the results. His oncologist wants him to start the velcade but he will have to consult with the stem cell doctor about this. He also wants him to take dexamethasone. He's taken this before and it was awful. He's been taking thallomide for about two years and has been experienceing the numbness in the hands and feet and the bone treatments (Aredia)he's been taking for over 2 years have caused his jaw bone to start to deteriorate. I've been doing some reading on the net about Velcade and some of the side effects. Would like to hear from someone who has gone through all these treatments and now have to take this Velcade. His oncologist also mentioned doing a second stem cell and my husband has said no but we will now more in about a week. Any info will help.

Thanks,
Shelia

Hi Shelia, My husband (56) has been diagnosed with MM since Nov. 2002 and has been on Thalidomide since Jan. 03. This past June he developed very large tumors, one on the notch on his sternum and in both breasts. Doctor stopped Thalidomide and he started Velcade in July. He had minimal shrinkage with 1st round, so doctor added the Thalidomide with the Velcade. He finished 2nd round in Aug. Great results!! Hardly noticeable. He started same regime this week but doctor wants to see if he's a candidate for stem cell rescue. Don't know yet and very skeptical of doing so. In answer to your question about Velcade...minimal stomach problems. Very quick chemo. Thalidomide is the culprit...tearing his legs and feet up, but no choice. What do you know about the stem cell rescue and what are the risks?

Dear Sugarland, So glad to hear from you. I don't know what I would do without this mesage board. I've heard so many different accounts of the degrees of MM mostly from a spouse or children of people with MM and even those with someone they lost from this awful cancer. I'm glad to hear something positive about this Velcade because from what I've read it doesn't sound like something I would want to have to take. My husband is already dealing the with hands and the feet being constant pain and constant numbness and tingling with the Thallomide but now he is dealing with the results of the Aridia which he had to take to strengthen his bones is now causing his jaw bone to deteriorate. They had mentioned another stem cell transplant but because the jaw bone is exposed the possibility of infection is a concern but he really doesn't want to go thru that again. It was really hard.

There is a procedure with the stem cell harvesting. With my husband he had to take really strong chemo to kill as many of the cancer cells as possible and then he had 2 iv's one in each arm one to take and one to put back in. I sat there and watched the process and it was very strange. There are two bags one for the stem cells and one that deposits the blood back into the body. You can actually see the stem cells going into the bag and it is a totally different color from the blood. It looks like tomato soup. They had to harvest about 2,000,000 cells which doesn't take long to do. Then they clean the stems cell and freeze them until they get ready to put them back in. He was in the hospital for about three weeks because I was still working and we had an exotic bird and cats and dogs to deal with at home and the chemo he got does away with any kind of immune system and they gave him the strongest dose of chemo that tries to kill anything left as for as cancer cells. He couldn't talk or eat because he was so sick and had sores in his mouth and throat. Then they have to wait and check to see when his white count starts to come back and that's when he got the stem cells back. It's very complicated. They did tell us that some people don't make through this process because of the chemo itself it's pretty strong. They told him they were going to take him to hell and back I swear and that's the way he felt.

Hope this gives you some idea of what is involved. I may have left some things out because it's been 2 years since he had the tranplant.

Please keep me posted I would like to hear how things go.

Shelia E.
Garland, Texas

I reread you letter the other day and I thought that you were saying that the Velcade was great hardly noticeable maybe because of few side effects. My husband started the Velcade 12/6 and will start his 3rd round 1/10 and you're right very little difference. At first my husbands protein count was 2.7 but went to 1.1 after only 3 treatments but now the Dr. is thinking that it might have been because of the steroids. So......now we have to see how the 3rd round goes and if there is still no change the doctor wants to add something with the Velcade like Doxil which I read about and the side effects are pretty bad. So far he hasn't had to much of a problem with the velcade other that more neuropathy and it doesn't help with the platelets but his white blood count is good some that means the marrow is working. But hopefully on or about Jan. 6th a new drug is to come out to patients with MM called Rivlimid and it's supposed to be very good and we are anxious to get started. Once he starts the rivlimid no more velcade and I believe there are few side effects with this new drug. He also may have to start the thalimid again.

Has your husband had the STC transplant and how did it go? They discussed a possible 2nd transplant with my husband but he doesn't want to have one unless it's the only thing left to do because it didn't take the first time and it was very difficult.

Hope to hear from you,
Shelia