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Velcade cycle 6 & stopped. sFLC still dropping. what to do?

by johanna on Fri Sep 06, 2013 11:07 am

Velcade has been stopped at cycle nr. 6 thought sFLC figure is still going down
july 587 kappa ml/L
august 470 kappa ml/L (19 % drop in a month)

the decicision was that another cycle of Velcade is not justified , even if the drop is 20% or more cause that gain will be lost in a few weeks when disease is on the rise....
we are wondering if another Velcade cycle could increase Ian's response ?
there is numbness in feet and pain in legs as well, muscle wastage.

but overall if myeloma is still responding , shouldn't we still get it ? till plateau is reached
any advice is welcome .... thank you

johanna
Name: Johanna
Who do you know with myeloma?: Partner
When were you/they diagnosed?: august 2012
Age at diagnosis: 60

Re: Velcade cycle 6 & stopped. sFLC still dropping. what to

by Christa's Mom on Fri Sep 06, 2013 12:03 pm

Hi Johanna,

Once Velcade is stopped, what is the plan for Ian? Is he having a SCT?

EJ's induction therapy was Velcade and Dex. Like, Ian he went thru 6 cycles before they stopped treatment to proceed to a SCT. The docs were mostly concerned about the percentage of myeloma cells in his bone marrow. Once it got under 10% (I think) they proceeded to the SCT.

He had to be free of the Velcade before the SCT, and his m-spike did rise a bit while we were waiting. But the SCT was successful, and he has been doing quite well since.

Hope that helps.

Lyn

Christa's Mom
Name: Christa's Mom
Who do you know with myeloma?: Husband
When were you/they diagnosed?: September, 2010
Age at diagnosis: 53

Re: Velcade cycle 6 & stopped. sFLC still dropping. what to

by Ron Harvot on Fri Sep 06, 2013 12:47 pm

Johanna,
It is pretty difficult to answer your question without knowing a lot more detail. I personlly have been on Velcade for over 4 years albeit it is in a maintenance dosage now. Generally if Velcade is working it would be continued unless something else is causing your oncologist to stop it. It sounds like he is having bad reactions, you mentioned wasting muscles, leg pains and numbness in his feet. Peripherial nueropothy (PN) is a common side effect with Velcade. If it gets real bad then people have to be removed from it, even if it is showing results. What other medication is he on? Has he been on Revlimid? That is drug that works in a different way from Velcade but has been effective. In many cases it is combined with Dex and Velcade but has its own issues with side effects. If Velcade works but PN is the issue, perhaps he could be switched over to Krypolis, which is a new drug and acts similar to Velcade but does not lead to the same problems with PN.

Ron

Ron Harvot
Name: Ron Harvot
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Feb 2009
Age at diagnosis: 56

Re: Velcade cycle 6 & stopped. sFLC still dropping. what to

by johanna on Sat Sep 07, 2013 6:17 am

thank you for your replies...
Ian was on Velcade (subcut) / dexamethasone . 6 cycles.
before that CTD - cyclophosphamide / thalidomide / dexamethasone
PN that IAN has is more of a cumulative effect of all chemo he got so far...including thalidomide, that causes PN as well.
another cycle would have been good we think , especially when figures are still going down
but they are looking more from a practical point of view at treatment .
what benefit would another cycle do ? another 20 - 30 % drop...
that might not mean a lot for them...
don't know what the answer is....we are looking at getting another 2 / 3 shots of Velcade
privately in Germany at a clinic ; Velcade + IV vitamins and oxygen therapy....
YES after all this, 1 month break & Stem cell transplant
because he is not on any trials (we refused that) he is getting regular treatment , therefore
no maintenance , which again dont know if is the best thing...
and PN is a concern for us as well , but when you are dealing with something so serious ,
it's the lesser of 2 evils... PN or fighting the multiple myeloma

johanna
Name: Johanna
Who do you know with myeloma?: Partner
When were you/they diagnosed?: august 2012
Age at diagnosis: 60

Re: Velcade cycle 6 & stopped. sFLC still dropping. what to

by Nancy Shamanna on Sat Sep 07, 2013 10:16 am

Hi Johanna, Good to know that Ian was getting Sub-Q Velcade, since the reason for giving it subcuaneously is to reduce neuropathy. SoUNDs like he has already been thru a lot of treatments that can cause PN, since he was given thalidomide too.

wHEN I had my four cycles of Velcade by infusion (sub Q not yet being used for that), almost four years ago, I did get just a bit of PN, which is still noticeable to me in my feet. Thus I know that PN can be permanent. Many patients have to use a lot of medications to try to control their painful symptoms from PN.

Are you able to consult with your myeloma specialist about these problems before you go to a private clinic for more Velcade injections? I gather that you may be posting in from somewhere in the EU, or the UK.

wISHIng you and your husband all the best ..this is simply a very difficult disease to cope with, and I hope that you will find the best possible route to get better!

Nancy Shamanna
Name: Nancy Shamanna
Who do you know with myeloma?: Self and others too
When were you/they diagnosed?: July 2009


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