[Chip]

Looks like "IT" is coming back - now what?

by Chip on Thu Nov 19, 2015 11:53 am

After four years of remission, my IgA is creeping back. First month it was detected in my bone marrow, second month it was detected in my blood. The results were not quantified, but IgA was detected.

Since my stem cell transplant (SCT) four years ago, I've been on 10 mg Revlimid maintenance. That dosage was increased to 15 mg two months ago.

Obviously, I'm hoping and praying that the increased dosage of Revlimid will stem the tide, but if not, what then?

I want to add that Velcade (IV) left me with severe numbing in my feet. I'm taking gabapentin to help that.

Looking for questions for my physician as well as possible treatments.

[Mike F]

Re: Looks like "IT" is coming back - now what?

by Mike F on Thu Nov 19, 2015 2:27 pm

I am currently in remission and on the 10 mg Revlimid regimen but have talked to my oncologist about what they'll want to do when the disease comes back. She thought that I'd likely be given Kyprolis as the next line of therapy, with a second autologous stem cell transplant as another possibility. (For what it's worth.)

[JPC]

Re: Looks like "IT" is coming back - now what?

by JPC on Thu Nov 19, 2015 5:41 pm

Hello Chip:

I don't know if you have been following the recent news, but elotuzumab is pending approval. It is right now targeted towards treatment at first relapse with Revlimid or Revlimid-dexamethasone.

The second reason that I wanted to reply is that the last time I answered in this manner, it was to another poster regarding daratumumab, and the approval then came in within 48 hours. I am hoping that the lucky streak continues. Good luck!! Regards, JPC

[NStewart]

Re: Looks like "IT" is coming back - now what?

by NStewart on Fri Nov 20, 2015 1:14 pm

Don't despair, there are so many possible treatments available if you can't manage the side effects from Velcade. Just this week, 2 new drugs were approved. If you aren't being seen by a myeloma specialist, this is the time to see one. Playing around with the different drugs and with the dosages is something that a specialist is very good at doing.

I have just started with a new possible side effect from dex. My oncologist and I decided to up my Revlimid dose, which might aggravate another side effect, and decrease my dex dose to see if what has been happening improves. He was so not wanting to eliminate the dex completely because of its proven benefits with Revlimid. But, in trying this new regimen, we will re-evaluate in 6 weeks to see if it is holding my M-spike and if so, reduce the Revlimid again.

It's all a matter of adjusting one thing here, adding another there, stopping one and starting another, etc. Try to stay positive that a different regimen will work well for you.

Nancy in Phila

[Chip]

Re: Looks like "IT" is coming back - now what?

by Chip on Sun Nov 22, 2015 5:25 pm

Thanks everybody.

I had my regular appointment at Emory Friday. I saw a nurse practitioner who reassured me that while my IgA protein continues to rise, it has not risen to a level that indicates a change from Revlimid at this time.

She further assured me that there are many options available when and if I get to that stage.