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Relapsed multiple myeloma

by laetetia on Sun May 22, 2011 10:24 pm

As I'm from Australia, I'm a bit confused over the conversion of the M spike in line with what we just list as the paraprotein level. My husband was diagnosed with Multiple Myeloma in 2001. They hit him with extensive chemotherapy and then he had a stem cell transplant. At the time his paraprotein level was 28, the stem cell treatment was still quite new and they gave him 10% chance of surviving it. At the end of it all, his paraprotein level was 4. They put him on zometa for his bones and he developed osteonecrosis, they pulled some teeth, he lost part of his jaw altogether and would have lost more if he didn't insist they stop chopping more pieces of bone off. Ultimately, besides bone pain he's been ok and off the medication. Since then his levels have been rising very slowly by 1 or 2 every few months but the paraprotein level has now reached 14.2 and his light chains are increasing and his doctor wants to start him on thalidomide together with some sort of blood thinner he has to inject into his stomach each day. He's a musician so terrified of the potential neuropathy that most people seem to experience. We didn't get a chance to ask the doctor a lot.

Firstly, I was curious to know of any relapsed patients or even patients that have first been diagnosed, what their paraprotein levels were. Secondly, the doctor is giving him thalidomide on its own with no further drug. Has anyone been on this and how long did they have to take it before they noticed a drop in the paraprotein levels. Can you stop it after a couple of months if the paraprotein level drops dramatically and then not restart it unless the levels rise again or once you start taking medication can you basically never stop being on one form of medication or another from here on in. Hopefully the forum can provide me with some answers.

laetetia
Who do you know with myeloma?: De facto
When were you/they diagnosed?: 2001
Age at diagnosis: 53

Re: Relapsed multiple myeloma

by Pamela Lussier on Thu Jun 02, 2011 9:41 pm

Hi,
I am currently not on any medication but was given thalomid with my first treatment and was on it for almost 4 years. I might not have quite the sensativety in my fingers that I did, but I am an artist and I also play piano. I am able to do these things without any problem. I did just post my full story if you would like to see it. I wish you and your husband the best in your journey .

Pam

Pamela Lussier
Name: Pamela Lussier
Who do you know with myeloma?: Pamela Lussier
When were you/they diagnosed?: 2007
Age at diagnosis: 50

Re: Relapsed multiple myeloma

by laetetia on Fri Jun 03, 2011 1:01 am

Thanks Pam. You are the first person I've heard who has not suffered with PN. I hope you manage to get the kidney transplant and that you stay in remission.

laetetia
Who do you know with myeloma?: De facto
When were you/they diagnosed?: 2001
Age at diagnosis: 53

Re: Relapsed multiple myeloma

by diamonds585 on Mon Nov 21, 2011 2:55 pm

My husband was symptom free and not on any treatments for 2 years when he relapsed. It was discovered not through a rise in paraprotein but in a fractured elbow. That was a year ago May. He has since been on Velcade, Dex and Revlimid. His counts are currently at zero but his cancer is continuing to progress. I asked his doctors what was going on. I thought that with low or zero Paraprotein there was an indication of no or low cancer activity. The explanation given was that the disease has learned the drugs and is now seeking different pathways. He got a hip replacement May of this year due to the deterioration caused by his cancer and now has developed a very agressive extramadulliary disease. So, nothing is what it seems. He has been on 4 cycles of Cytoxin, Velcade and Dex now but it doesn't seem to touch the EM disease. My husband just turned 60 and has battled this for 8 years now. He had part of his spine removed, his upper left arm bone, his hip and acres of skin from cancers caused by the drugs. He still goes to work every day as a product manager for an international company!!

diamonds585
Name: Eva
Who do you know with myeloma?: husband
When were you/they diagnosed?: October, 2003
Age at diagnosis: 52

Re: Relapsed multiple myeloma

by laetetia on Mon Nov 21, 2011 10:03 pm

Wow. That's scary. I've been watching the paraprotein level but also in conjuction with the haematology movements on the blood test results and the urine test results. When my husband fractured his disk in a fall they immediately made him do radiation for a few weeks. Fortunately they are only putting him on one drug at a time and not in conjuction with the others so if it doesn't work, then he'll still have the option to try the combination of drugs. Like your husband, he still goes to work every day and then often plays in a band on the side. I think it helps to keep up the fighter attitude and stay positive. I wish your husband luck in his journey and hopefully all the trials going on will find a cure soon.

laetetia
Who do you know with myeloma?: De facto
When were you/they diagnosed?: 2001
Age at diagnosis: 53

Re: Relapsed multiple myeloma

by Owl on Tue Nov 22, 2011 5:53 am

Hi Laetetia I'm from Australia too. If your husband is really worried about PN and who wouldn't be then you should investigate getting treatment with Revlimid instead of thalidomide. I had 4 months of induction treatment with Revlimid through a clinical trial and now I'm on maintainance with Revlimid and prednisolone and I've had no PN problems at all. I'm an embroiderer so it worried me a lot. Revlimid is only available on clinical trial for newly diagnosed patients but I think it can be got through the PBS for relapsed patients or if PN on thalidomide becomes a major problem. Worth talking to your doctor at any rate.

Owl
Name: Sylvia
Who do you know with myeloma?: Self
When were you/they diagnosed?: November 2010
Age at diagnosis: 57

Re: Relapsed multiple myeloma

by laetetia on Thu Feb 02, 2012 10:30 pm

Thanks Owl. He stopped the thalidomide after six weeks and is now on Subcutaneous Velcade. No side effects but his doctor says his levels aren't dropping fast enough.

laetetia
Who do you know with myeloma?: De facto
When were you/they diagnosed?: 2001
Age at diagnosis: 53

Re: Relapsed multiple myeloma

by wendy on Fri Feb 03, 2012 3:28 am

Laetetia,

same here. my father is on Subcutaneous Velcade, but his levels aren't dropping as fast and as much as he was on IV Velcade. Anyone has similar experience?


laetetia wrote:
> Thanks Owl. He stopped the thalidomide after six weeks and is now on
> Subcutaneous Velcade. No side effects but his doctor says his levels
> aren't dropping fast enough.

wendy

Re: Relapsed multiple myeloma

by ninja performance on Fri Feb 10, 2012 4:16 pm

wendy wrote:
> Laetetia,
>
> same here. my father is on Subcutaneous Velcade, but his levels aren't dropping as
> fast and as much as he was on IV Velcade. Anyone has similar experience?
>
>
> laetetia wrote:
> > Thanks Owl. He stopped the thalidomide after six weeks and is now on
> > Subcutaneous Velcade. No side effects but his doctor says his levels
> > aren't dropping fast enough.

I did my initial 5 cycles on Velcade/Dex/Rev and was Subq and my numbers dropped from 8.9 mspike and 80% marow to 0.1 and 2%. It worked great for me.

-Chris

ninja performance
Name: Chris Hill
Who do you know with myeloma?: Self
When were you/they diagnosed?: 08/04/2011
Age at diagnosis: 43

Re: Relapsed multiple myeloma

by laetetia on Mon Feb 13, 2012 8:17 pm

Wendy, is your Dad on sq Velcade alone or in combination with other drugs? Also, is he on once weekly ? I was thinking of asking the doctor for twice weekly on the sq rather than changing to once weekly IV to see if that made a difference.

laetetia
Who do you know with myeloma?: De facto
When were you/they diagnosed?: 2001
Age at diagnosis: 53

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