[Christina]

Velcade or Pomalyst?

by Christina on Wed Apr 08, 2015 12:19 pm

So, a couple of quick questions that hopefully I can get some response to as I see my doctor tomorrow.

Just got back my labs, and my m protein is the same at 0.5 g/dL (5 g/L), so no change there. But kappa light chains went up to 935 mg/L. So this is a significant increase from last month of 780. I did have a bladder infection, and I know this could affect it, but I'm not comfortable with this increase.

So, my question is: Should I ask my doctor about the Velcade (which I will), but then I was thinking should I switch to Pomalyst (pomalidomide, Imnovid), as it's so much easier since its in pill form.

Any suggestions that one might be better than the other for light chains?

Also, I called UCSF to get an appointment with Dr. Wolf, but it's not so easy. First, it's best to be doctor-referred, as they tell him everything to send. So, I guess I'll bring that up too. I thought it'd be easier. Anyway, guess I'll see how it goes.

I'm definitely a little depressed about this, but onward. Like there's a choice! Right.

Oh, then I had the bone marrow biopsy done under sedation, which was wonderful till I just got the copay bill of $2000. So, I'll have to rethink that in the future.

[TerryH]

Re: Velcade or Pomalyst?

by TerryH on Wed Apr 08, 2015 12:32 pm

Hi Christina,

Can you refresh our memory again as to what your treatment history is and how you reacted to the different treatments you've had?

[Eric Hofacket]

Re: Velcade or Pomalyst?

by Eric Hofacket on Wed Apr 08, 2015 12:43 pm

Christina,

My suggestion is to see what you doctor has to say about what the next best thing to do to treat you is and then go from there.

If you can get seen by a specialist like Dr. Wolf, then I would think hard about deviating from his recommendations on what to do next. He should also be able to put the increase in your light chains into context of whether the change is significant or not for your case.

Oral drugs are certainly much easier than IV drugs from a convenience standpoint, though.

[Christina]

Re: Velcade or Pomalyst?

by Christina on Wed Apr 08, 2015 12:56 pm

Hi Terry,

So history is long but not too complicated:

• Diagnosed in 2005; radiation, Doxil, dex, something else I can't remember.
• Stem cell transplant (SCT) in March 2006
• Complete remission till 2010
• Revlimid / dex off and on since
• Only recently this kappa light chain increase.

Yes, Eric, that's what got me thinking about Pomalyst as, if I do Velcade, it's a 55 minute drive. Once a week, that's a lot for me, but I'd do it if it's better than Pomalyst for the kappa free light chains (FLCs).

I'm going to suggest the referral to Dr. Wolf but that could be months away. I didn't realize it was so complicated.

Thanks for the quick answers. I'm sure I'll know more tomorrow. I'll certainly give an update. I don't deal well with these changes; I'm a 'keep my head in the sand' sort of person. But I'm going to try and be more assertive.

[blair77]

Re: Velcade or Pomalyst?

by blair77 on Thu Apr 09, 2015 1:33 am

We see Dr. Wolf; his fellow Dr. Thomas Martin may be easier to get in with, but yes, they will need all your medical records before referral.

[Christina]

Re: Velcade or Pomalyst?

by Christina on Thu Apr 09, 2015 9:56 am

Blair77,

So do you see a local oncologist too? And when I called UCSF, the woman said usually referrals are made by your own doctor. I have a lot of records, but I guess that's protocol. I'm wondering how long approximately did it take?