[sakowitzm]

Maintenance post stem cell transplant?

by sakowitzm on Mon Sep 29, 2014 9:54 pm

Quick history of my wife’s multiple myeloma:

Diagnosed MGUS in 2003; IgA at 1,900; no symptoms whatsoever.

Three years of monitoring; IgA rises to 6,900; no symptoms whatsoever.

One year on a clinical trial of Kineret (anakinra); moderate improvement, then back up to IgA 6,900; no symptoms whatsoever.

7 years of Revlimid; IgA drops to 900, stays 900-1200 for several years, then slowly increases; no symptoms whatsoever; at 1,900, decision made to go to autologous stem cell transplant (ASCT).

One round of Velcade with limited improvement. Two rounds of pomalidomide (Pomalyst) brings IgA down to 1,200 at beginning of ASCT. Velcade introduces mild peripheral neuropathy.

Successful ASCT! No M Spike, IgA down to 640.

100 day check-in even better – no M Spike, IgA down to 320 (normal!); bone marrow biopsy shows 7% level.

So here’s the question. When / whether to go on maintenance?

For patients with bone lesions, kidney involvement, etc., maintenance makes sense – you can’t afford for those symptoms to return. Throw everything we have at the multiple myeloma. But my wife has NEVER had any symptoms at all. And, when she was on Revlimid, then Velcade, then pomalidomide, she didn’t sleep well, she went from diarrhea to constipation and back, and she developed peripheral neuropathy.

So in terms of quality of life, the no-brainer seems to be to NOT go on maintenance for as long as possible. Let the IgA run … up to, maybe, 3,000? So long as she continues symptom-free, of course. And by waiting, we don’t use up one more treatment, and time passes so that new treatments come along.

Thoughts?

[TerryH]

Re: Maintenance post stem cell transplant?

by TerryH on Mon Sep 29, 2014 11:53 pm

Hi Speedy,

Welcome to the forum.

It's great that your wife was able to achieve a complete response to treatment after her stem cell transplant. I hope she is able to stay in remission for a very long time.

I have a couple of questions about your wife's diagnosis and treatment history. You say that she was diagnosed with MGUS in 2003. Was her diagnosis ever formally "upgraded" (I know, that's a bad choice of words) to smoldering myeloma or multiple myeloma?

I ask because it strikes me as very odd that, based on what you've written, she was never diagnosed with symptomatic disease (multiple myeloma), yet she underwent treatment with several different myeloma therapies. That's unusual, to say the least, for someone never diagnosed with symptomatic disease.

Symptoms, by the way, don't have to include pain or broken bones. They can be anemia, bone lesions, kidney damage as evidenced by elevated creatinine levels in the blood or other markers, or elevated calcium levels.

You also say that your wife was treated for 7 years with Revlimid. Do you really mean 7 years? Or was it 7 months?

Finally, what was your wife bone marrow plasma cell percentage prior to the start of treatment with Revlimid? Also, did her doctors tell her if, prior to her Revlimid treatment, she had any chromosomal abnormalities (deletions, translocations, etc)?

Sorry for all the questions. It's just that I think that clearing some of these things up might help for the rest of the discussion here.

Also, at least for my own reference as this discussion continues, I'm going to jot down here that the reference (normal) range for IgA is 61 - 356 mg/dL.

[Multibilly]

Re: Maintenance post stem cell transplant?

by Multibilly on Tue Sep 30, 2014 7:38 am

Terry,

Thanks for asking these follow up questions.

I am curious how about this statement: "Successful ASCT! No M Spike, IgA down to 640".

Would you expect to see no M-spike with an IgA of 640 mg/dL?

Speedy,

Given the above, it might be useful if you also included the M-spike values at these various milestones. Also, like Terry said, congrats on your wife's ASCT response!

[TerryH]

Re: Maintenance post stem cell transplant?

by TerryH on Tue Sep 30, 2014 8:43 am

Multibilly,

Good point about the IgA level and whether it fits with an M-spike of zero.

The reference (normal) range for IgA is roughly from 60 to 360 mg/dL for adults. So an IgA reading of 640 mg/dL would suggest an M-spike higher than zero.

[Multibilly]

Re: Maintenance post stem cell transplant?

by Multibilly on Tue Sep 30, 2014 8:58 am

Ah, I now remember that measuring M-spikes in IgA patients can be tricky and misleading, especially at lower concentrations. I can now see why Speedy provided the IgA readings over time.

Last edited by Multibilly on Tue Sep 30, 2014 9:46 am, edited 1 time in total.

[Multibilly]

Re: Maintenance post stem cell transplant?

by Multibilly on Tue Sep 30, 2014 9:11 am

Speedy,

For what it's worth, although I haven't been down this path personally, I have been somewhat swayed by the arguments for maintenance, for a year or two anyway. But I don't think I would personally sign up for indefinite maintenance, as is now being suggested by some doctors.

Obviously, your wife has experience with both Revlimid and Velcade and would know what to expect with both drugs (although maybe not at a reduced dose level). While not a recom­men­dation at this time, I might suggest you further explore either a low-dose Revlimid regimen or a low-dose subcutaneous Velcade regimen (which you can administer yourself, since it could be quite inconvenient to have to go in repeatedly for maintenance shots). This might allow your wife to have both a high QOL and take advantage of the maintenance approach.

The answers to Terry's earlier questions will also likely color the follow-up responses you will get and may also determine if maintenance makes sense in general. They also may help with getting ideas about the best maintenance drug for this situation, if maintenance is called for.

[sakowitzm]

Re: Maintenance post stem cell transplant?

by sakowitzm on Tue Sep 30, 2014 10:16 am

Ahh ... great to see initial responses. Thanks very much.

And thanks for the congrats. Obviously, we are thrilled. And I hope this encourages others -- we seem to be an excellent example of myeloma as a chronic, treatable disease. Knock on wood.

I have a few answers for now, but will have to defer until my wife returns this afternoon for more answers.

Answers:

1. Yes, her diagnosis was formally upgraded to multiple myeloma.
2. The only symptom she has had is anemia; hemoglobin in the 9-10+ range, so not terribly low.
3. Yes, I do mean that my wife was treated for seven YEARS with Revlimid. Within a few months her IgA dropped from nearly 7,000 to 900, and stayed in the 900-1200 range for several years before slowly climbing up. We take from this that her myeloma is a wimbly-assed piece of sh*t!
4. I believe the bone marrow plasma reading got as high as 30% or so, prior to going on Revlimid. But I'll have to check that.
5. To my recollection, we've never discussed chromosomal abnormalities with either her local oncologists (we've had two) or her doctor at the Mayo Clinic. I'll check with my wife.
6. I'll double check on the NO M Spike after ASCT comment. I'm fairly certain of it, but not 100%.

More later. Thanks again for the initial feedback. And ask away - no worries about the questions.

Speedy

[Cheryl G]

Re: Maintenance post stem cell transplant?

by Cheryl G on Tue Sep 30, 2014 11:06 am

"We take from this that her myeloma is a wimbly-assed piece of sh*t!"

This cracked me up totally. Literally laughed out loud, more than once.

I suggest that, from now on, we refer to ultra low-risk disease here in the forum using the acronym "WAPOS".

[sakowitzm]

Re: Maintenance post stem cell transplant?

by sakowitzm on Tue Sep 30, 2014 7:45 pm

Update:

I don't really have much more than previous ...

I confirmed that my wife's hemoglobin has generally been in the upper 9s to around 11. Definitely, when her IgA level was low, the hemoglobin did get up to normal - 12+.

Repeating, my wife was on Revlimid for seven years. Went on Revlimid when IgA hit about 6,900. Revlimid brought it down quickly to 900. Stayed generally 900-1200 for several years. Topped out at 3,900 in January 2014, which is when we made the decision to go to ASCT in June (after several rounds of Velcade, then pomalidomide.)

Bone marrow results around 30% when IgA up around 6,900. 7% today, at 100-day check-in following ASCT.

Confirming no M-Spike at this time.

So those are the answers to your questions. Would love to hear more thoughts about going on maintenance therapy or not following successful ASCT.

Thanks!
Speedy