Hi all, Im in Ireland, my brother was diagnosed with mm april 2007, in December of 07 he had a stem cell transplant. A month ago the cancer came back, now he has lesions on his spine and arm, nobody seems to be able to tell me whats going to happen next and Im very worried for him. He is in hospital at the moment and they are not giving me any information as Im not immediate family. Today he is going for radiotherapy on his spine, im only talking to him and sometimes hes so out of it on the pain relief drugs that I dont know whats what...so anyone out there tell me is my brother dying?? thank you..

Hi Susie,

Does your health plan cover the use of Velcade for myeloma? What are all the treatments he's had and what is his age?

Is it possible for him to seek another opinion in the health care system? I realize there may be limited opportunities for that if hes not well enough to travel. Would his doctor be willing to speak with one of the US experts?

I would not give up or allow my doctors to give up on me either. Has he had thalidomide, revlimid, melphalan or cytoxan? There's also even arsenic trioxide and other possible treatments.

Hi beth,

thanks for your reply. My brother is 47, he has had a stem cell transplant, after which he went home and was doing well on thalidomide, it is now 6 months since then stem cell transplant. He is currently in hospital having lots of radiation on his arm and spine for lesions.

they are trying to come up with a new plan, dont know if they are going to try another stem cell transplant.

There has been mention of velcade.
After that Im mainly in the dark on what happens next.
He has three children and I dont think there is any danger of him letting them give up on him...so im trying to keep positive with him.
thanks
susieq

I did well on Velcade and had very few side effects. We're all different in how we respond to treatment though. I know someone who's been doing well on Revlimid for over 4 years, but it failed for me in under 8 months.

Would your brother's doctor be open to calling or corresponding with a specialist such as Dr. Berenson, Dr. Durie or Dr. Richardson to help formulate a treatment plan? You could also email the IMF at TheIMF@myeloma.org to see if they can make some suggestions.

Also, if you sign up for the mailing list, there are lots of patients and family with more experience to draw from. http://www.mmsupport.net/content/view/188/80/

Susieq,

Another stem cell transplant (I'm assuming it was an auto) is probably not the best option for your brother. I had an auto SCT in 8/07 with very little response.

I have been told that the rule of thumb is that with a second transplant the remission time is only about 1/2 what you got from the original. So with a low or short response it is probably not a good choice. There are tandem transplants done where a second transplant follows the first after approx. 90 days but I believe at this point, a second transplant would not have the same advantage of the tandem transplant for your brother. Of course, everyone is different.

In Dec. 2006, I did a single round of Velcade/Revlimid/dex and had a great response from that with few side effects. Today I started a round of Velcade/melphalan/dex. Hopefully that will give me as good a response.

Good luck finding what works for your brother.

Janet