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Post ASCT blood results questions

by Joy on Sat Jan 11, 2014 1:54 pm

Hi everyone,

The blood results that I'm posting are from day 85 post stem cell transplant. These are followed by some results just prior to the transplant, one from mid-induction chemo and one from diagnosis.

As you can see, my M-Spike is down to .49 and was at .9 prior to transplant. Overall these aren't bad numbers with the exception of my Kappa and my Kappa/Lambda ratio which is higher than pre-transplant.

Another very troubling thing is that I now have two bumps on my skull that I believe are plasmacytomas. I noticed the first one coming back the first week of December and the second one started up last week. I had some at diagnosis and my RVD took them down to flat. Then, at the end of 6 cycles of induction, these came back again but the Cytoxan for harvest and probably the transplant took them down to flat again. At the beginning of December, when I noticed that one might be coming back, my myeloma specialist said that in his many years of practice, he'd never seen someone with my blood numbers (all my regular counts are in a very healthy range- best RBC I've had in years, etc.) develop the plasmacytomas and so he had reasonable doubt to think that this is what the bumps were. (He gave a list of possibilities such as water or remodeling.) It's very perplexing.

Anyway, I wondered about radiation but he believes that the chemo would treat it systemically much better. So, we are still going with what was planned originally which is 2 cyles of consolidation of my RVD at the same doses that I had at induction. The plan is to switch to maintenance which would be a Velcade shot once every other week instead of twice a week and keep the Revlimid at 25mg. Dex would be on Velcade days. Maintenance might be delayed for further higher doses of consolidation to take place or perhaps even a switching of drugs if the bloods don't show improvement.

Sorry this is so long but my questions are:
1) Anyone else experience some bump in bad numbers this soon after transplant?
2) Anyone else with the skull plasmacytomas?

They were never able to get cytogenetics on me but it's believed I'm high risk due to what seems to be fast disease progression and a lot of bone involvement. My kidney function is good. To me it's very weird that I can have an elephant man bump on my skull and a reduced M-spike. My specialist said there's not quite enough evidence to call it a relapse because of mixed results in my labs. I just finished the first week of consolidation.

Thanks for your input.

Lab Results:
Total Protein  7.0 g/dl         6.0 - 8.0 g/dL
Albumin        3.43 g/dl        3.20 - 5.30 g/dL
Alpha 1        0.24 g/dl        0.10 - 0.40 g/dL
Alpha 2        1.21 g/dl  (HI)  0.50 - 1.00 g/dL
Beta           0.97 g/dl        0.60 - 1.20 g/dL
Gamma          1.15 g/dl        0.80 - 1.70 g/dL

Kappa          56.30 mg/L (HI)  3.3 - 19.4 mg/L
Lambda         4.46 mg/L  (LO)  5.7 - 26.3 mg/L
Kappa/Lambda   12.623     (HI)  0.26 - 1.65

IgG            1300 mg/dl       700 - 1600 mg/dL
IgA            100 mg/dl        70 - 400 mg/dL
IgM            27 mg/dl   (LO)  40 - 230 mg/dL

Gamma M Spike 1     0.49 g/dl*

Most Recent Prior Serum Electrophoresis Results:

Lab Results:
Date      Beta  Gamma Kappa  Lambda  K/L  IgG   IgA   IgM   MSp1  MSp2
          g/dl  g/dl  mg/l   mg/l         mg/dl mg/dl mg/dl g/dl  g/dl

09/12/13  1.02  1.18  9.26   2.87    3.22 1280  48    37    0.90
08/07/13  1.01  1.11  19.40  2.48    7.82 1220  42    36    0.85
05/09/13  1.23  6.98                      7600  <23   <17   6.86

Joy
Name: Joy
Who do you know with myeloma?: myself
When were you/they diagnosed?: May 2013
Age at diagnosis: 52

Re: Post ASCT blood results questions

by SandyC63 on Thu Jan 23, 2014 9:42 am

Hi Joy,

I have been following your progress, as my husband also had a ASCT this past fall. He was diagnosed as "standard risk" when we started our journey in January 2012 when he was in the smoldering state (m-spike at 2.2). His condition advanced to multiple myeloma in March 2013 and he started treatment in April with 4 cycles of Kyprolis, Rev, and Dex. His M-spike went from 3.2 to 1.3 and he proceeded to transplant.

This week we had his follow-up after the 100 days and learned that his m-spike is still 1.3, and feel very disappointed. His IgG value also stayed the same, but we did get a slight decrease in FLC. We just learned that his BMT did show a decrease to 3-5% plasma cells, so that was also good news. They have tried to reevaluate his risk level twice since the original determination, but have not been able to do so. Because he was "standard risk", we would have expected a better result both from the initial treatment and the ASCT. We share your concerns and feelings. I'm now starting to wonder whether the strains of the myeloma (kinetics of it?) also need to be considered with determining risk. Is that even possible?

My question is this - are there others out there who have had less than ideal responses to ASCT and still ultimately had a good result?

Thanks,
Sandy

SandyC63
Name: SandyC
Who do you know with myeloma?: My Husband
When were you/they diagnosed?: 2012
Age at diagnosis: 51

Re: Post ASCT blood results questions

by rumnting on Thu Jan 23, 2014 10:54 am

Many people's M-spike continues to drop for 6-9 months after their ASCT.

rumnting
Who do you know with myeloma?: husband
When were you/they diagnosed?: 4/9/11
Age at diagnosis: 54

Re: Post ASCT blood results questions

by NStewart on Thu Jan 23, 2014 1:43 pm

I went in to transplant with 0.8 g/dl m-spike and came out with the same. It remained at that level until about 6 months post transplant when it began to decrease. I reached CR around 8 months. I relapsed about 34 months post transplant and restarted treatment. I wasn't on maintenance because of a bad reaction to Revlimid at 100 days.

Hang in there, things may start to improve.

Nancy in Phila

NStewart
Name: Nancy Stewart
Who do you know with myeloma?: self
When were you/they diagnosed?: 3/08
Age at diagnosis: 60

Re: Post ASCT blood results questions

by Ladyaero on Thu Jan 23, 2014 6:17 pm

My husband has had an m-spike of 0.0 since his transplant in Jan, 2012, but he relapsed in Sept, 2012 with plasmacytomas on his shin (multiple) and skull (they were biopsied, so we know that they were myeloma). They did localized radiation, which shrank the tumors, but pain in my husband's shoulder (with a scan indicating possible internal plasmacytomas), and new lumps showing up in his cheek and on his rib cage led us to moving from radiation to chemo.

They tried Kyprolis with dex, but the plasmacytomas didn't respond at all to that. Then they moved on to Pomalyst [pomalidomide, Imnovid], but my husband is allergic (he is also allergic to Revlimid). He then was on Velcade/dex/Cytoxan for a year, which made all of the tumors disappear, but he has had a much harder time with side effects this go-round.

The doctor took him off the Velcade last month because of severe and advancing neuropathy. So far, so good on just the Cytoxan/dex, but it's hard to monitor. Since his m-spike has continued to stay at 0.0, the only way to track it is to watch for lumps to grow. All of that is a long winded way of saying that you can absolutely have plasmacytomas and bone involvement and still have good blood work.

Ladyaero

Re: Post ASCT blood results questions

by Multibilly on Thu Jan 23, 2014 7:01 pm

Hi Ladyaero,

So, did your husband's disease transform into a nonsecretory version of myeloma? I don't see how one can have mm-related plasmacytomas without there being monoclonal protein somewhere in the body...the disease just may not be showing up via a serum M-Spike and would instead need to be measured via a serum FLC assay? Were/are his FLCs also normal?

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Post ASCT blood results questions

by Joy on Sat Jan 25, 2014 8:44 am

Thanks everyone for your responses. Ladyaero, that's really interesting (wish I could think of a better word) that your husband has a 0 M-spike but was getting plasmacytomas. It's such a strange disease. I have just finished one cycle of RVD for consolidation and my plasmacytomas are almost completely flat now. The one on the side of my head had gotten quite large. To me, this indicates that they were myeloma activity. My myeloma specialist at Dana Farber didn't want to believe that this is what they were because my M-spike was low and most of my counts were in the normal range. He has been treating myeloma patients since 1995 and said that he'd never seen plasmacytomas develop with my kind of blood numbers. So, thank you for responding with your husband's story. It made me feel less alone and not so crazy! :shock: I send you my best wishes for keeping those plasmacytomas at bay. A zero M-spike is a good thing, though. At least that's a positive thing to celebrate.
Sandy, thank you also for your response and I'm interested in responses to your question, too. I feel somewhat afraid that I am having some myeloma activity this soon after transplant. Hopefully, since your husband is standard risk, he will see his numbers improve over the next few months as others have mentioned. I send you my best wishes for continued improvement.

Joy
Name: Joy
Who do you know with myeloma?: myself
When were you/they diagnosed?: May 2013
Age at diagnosis: 52

Re: Post ASCT blood results questions

by Ladyaero on Sat Jan 25, 2014 4:58 pm

Multibilly- They are tracking his FLC, but even when my husband had more than a half dozen small plasmacytomas (several of which were biopsied, so we know for sure they were myeloma), there were only "trace" FLCs found. I really have no idea (and I don't think the Dr does either) as to how he can have that much activity and not have it show up in his blood work. With the chemo doing it's thing (plasmacytomas gone), you can actually SEE the lesions left behind on his skull (significant dents in his skull where the plasmacytomas used to be), which I would call some significant myeloma activity. It's just a frustrating mystery.

I'm glad to share the info, Joy, as it has been difficult for me to find anyone else with a similar situation. This is already a hard enough disease without feeling (as you said) like you're being called crazy just 'cause your/your spouse's symptoms aren't like anyone else's. We'll just "keep swimming" as they say. :-)

Ladyaero

Re: Post ASCT blood results questions

by Multibilly on Sat Jan 25, 2014 6:38 pm

Ladyaero - How downright insidious and maddening! Was your husband also getting 24-hour urine tests and did those also come up relatively clean? I'm assuming all of blood work must have been flagging myeloma before he had the transplant, right?

Seems like a good lesson for others not to rely just on blood work when they are seemingly in remission.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Post ASCT blood results questions

by Ladyaero on Sat Feb 01, 2014 12:09 pm

Multibilly - Yes, when my husband was diagnosed he had an m-spike of 3.4, bone marrow biopsies (2) confirming myeloma and multiple plasmacytomas (the largest, which basically destroyed half of one of his ribs, biopsied and confirmed as myeloma; full body scan showing more lytic lesions than I could count, including one that caused a broken clavicle).

Velcade and dex (he's allergic to Revlimid, so that was a no-go) knocked his m-spike down to 0.0 within 3 cycles and kept it there for over a year. Then the m-spike started creeping back up (0.5, 0.7, etc) and we decided to go for the transplant (while off of chemo for 6 weeks approaching the beginning of the transplant process, new plasmacytomas also formed on his skull - the largest left a quarter sized indentation you can still see).

The chemo leading up to the stem cell collection knocked the m-spike back down to 0.0 and the plasmacytomas disappeared. Transplant in January 2012. Plasmacytomas returned in September 2012. Still no m-spike (blood and 24 hour urine test, as doctor was perplexed ... threw a ton of tests at him). Radiation, until too many spots meant he needed systemic treatment. Tried several chemos, but none shrank the plasmacytomas until back on Velcade/dex, with Cytoxan thrown in, in May 2013. Lumps gone and still no m-spike.

Doctor took him off Velcade in Dec 2013 due to severe neuropathy, but as of this weekend, we might need to revisit that decision - there is a new, small raised area that might be the beginnings of a plasmacytoma on his skull, but it is too small to tell yet and too small to biopsy (I don't particularly trust PET scans for something this small either, as we have had false negatives on small lumps that later biopsied as positive once they were bigger ... I guess they need to be a certain size before they show up as "active" on the scans).

We're waiting until he recovers from the cold he caught last week, then we'll talk to the Dr about next steps.

Ladyaero


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