[vkjalan]

Mom's initial chemo completed - what next?

by vkjalan on Sat Jan 03, 2015 3:57 am

Hi,

Greetings of the Day !

Mom has completed her 6 cycles of VRD (Velcade 2 mg, Revlimid 25 mg, and dex 40 mg weekly) chemo regimen and we have got her test done.

The reports are

Immunofixation Electrophoresis

Beta-2-microglobulin,serum by CLIA: 6329.00

Serum Total Proteins 5.91 g/dL
Serum Albumin 3.69 g/dL
Alpha 1 Globulin 0.26 g/dL
Alpha 2 Globulin 0.85 g/dL
Beta 1 Globulin 0.36 g/dL
Beta 2 Globulin 0.34 g/dL
Gamma Globulin 0.41 g/dL
Album/Globulin Ratio 1.67
"M" Band Absent

IgA level, serum by Nephelometry 128.00 mg/dL
IgG level, serum by Nephelometry 589.00 mg/dL
gM, serum by Nephelometry 25.80 mg/dL

Free kappa (light chain),serum by nephelometry 22.10 mg/L
Free lambda(light chain),serum by nephelometry 16.40 mg/L
Free kappa/ lambda ratio 1.35

Immunofixation (Qualitative)
Electrophoretic Zone
IgG Absent
IgM Absent
IgA Absent
Kappa Absent
Lambda Absent
M -Band Absent
Impression: No monoclonal gammopathy seen.

Flow Cytometry Report

Multiple Myeloma Panel
Marker Result Units
B-cell Markers
CD19 22.4 % of Gated Leukocytes
Cy.Kappa 22.5 % of Gated Leukocytes
Cy.Lambda 12.8 % of Gated Leukocytes

Others
CD38 100 % of Gated Leukocytes
CD56 2.5 % of Gated Leukocytes
CD138 8.6 % of Gated Leukocytes
CD45 50.2 % of Gated Leukocytes
CD20 1.5 % of Gated Leukocytes

Interpretation of Observations
Specimen Type: - Bone Marrow showed TLC - 12,800 cells/µl.

SSC Vs CD38 Gating.

Flow cytometric analysis shows 0.4% polyclonal plasma cells expressing CD19, CD38, CD45, polyclonal for Cy.Kappa/ Cy.Lambda and rest of the markers are negative.

Impression
No evidence of multiple myeloma in the sample analysed.
Her bone marrow aspiration and biopsy show no traces of multiple myeloma and the BM is in morphological remission.

We had consulted the oncologist yesterday to discuss the further course of treatment. He has suggested us 3 options and told us to consult other doctors to make the decision.

1. Stem Cell Transplant and with Maintenance Treatment - Injection of Velcade every 15 days with oral lenalidomide (Revlimid) (even if we do SCT, we need to continue with maintenance).
2. Stem Cell Collection and Stem Cell Transplant at a later date - Waiting for newer treatment options, continue with maintenance treatment with injection of Velcade every 15 days with oral thalidomide.
3. Only maintenance treatment with injection of Velcade every 15 days with oral thalidomide.

His opinion was stem cell collection and waiting for a relapse to treat at a later date. What he says was that basically stem cell transplant will only prolong the time of relapse and not survival time (as per the general studies), but he also stated that usually these studies were done only on older meds and not on bortezomib (Velcade), so he was not sure on the results of SCT on the newer meds.

He was having some reservations towards stem cell transplant as mom is having del13q14.3 in her FISH test, which he says would not respond well to SCT (again, only past studies to support the claim).

Now we are in a situation wherein we need to take a decision on the next line of treatment.
My questions would be:

1. What should be the next line of treatment - SCT / stem cell collection / just keep her on maintenance?
    
2. Advantages of going ahead with stem cell transplant (will it prolong her life / better quality of living)?
    
3. Why is that even after stem cell transplant, we need to keep her on maintenance medicines?
    
4. Why is that she is having a low hemoglobin count (peripheral smear examination says she is having normocytic normochromic anemia)?
    
5. Usually without a SCT how long does it take for the disease to relapse?
    
6. Any test to be done regularly or markers to keep in mind to lookout of the disease coming back or aggravating?
    
7. How much time do we have in hand to take the decision. Any meds to be taken during this course of wait?
    
8. Are the meds suggested right to keep her on maintenance with SCT or no SCT?

She is currently not on any medication apart from the high blood pressure tabs.

I would like suggestions from experienced members. Really tough to take the decision.

[mikeb]

Re: Mom's initial chemo completed - what next?

by mikeb on Sat Jan 03, 2015 4:20 pm

Hi vkjalan,

First of all, I strongly agree with your oncologist's recommendation to consult other doctors before making a decision about next steps for your mother. In particular, it would be good to consult with someone who specializes in treating multiple myeloma patients, because this is such a complex disease.

Second, I am not a doctor myself, so please take what I say below with a grain of salt.

With those preliminaries out of the way, I'll attempt to answer as many of your questions as I can.

Based on the reports you've posted, your Mom is doing really well. It appears to me that she has achieved both stringent complete response (sCR) and is minimal residual disease (MRD) - negative. These are the best results anyone can get currently in myeloma treatment. Congratulations to your Mom and to the medical team treating her!

Having said that, the working assumption has to be that there is still myeloma in your mother, even though the tests cannot detect it. That is why the oncologist is suggesting further treatment.

Your questions:

1. Unfortunately, I can't speculate on the best next course of treatment for your mother. There are many factors that need to go into this decision, including your mother's age, general health outside of the multiple myeloma, side effects that she experienced in the treatment so far, etc. This is why you need to consult with a myeloma specialist.
    
2. Whether to do a stem cell transplant early in the treatment or to delay it is a very hot topic for debate these days. For some differing opinions on this, see this recent Beacon forum thread, "How did you decide whether to have a SCT or not?". Again, another reason to consult with a specialist.
    
3. The short answer is that one still has to assume that there are myeloma cells in your mother, even with the excellent test results you posted. All things being equal (which they rarely are, of course), you want to reduce the myeloma burden as much as possible through the initial treatment (which would include any treatment your Mom gets in this next stage). There are recent studies showing improved results when patients receive maintenance therapy, for example http://www.ncbi.nlm.nih.gov/pubmed/24395544. However, this is another area where there is debate. And there are lots of individual factors to consider, as I mentioned earlier.
    
4. I don't know why your Mom has low hemoglobin. Did she have low hemoglobin before starting myeloma treatment? It's possible that the low hemoglobin now might not be related to multiple myeloma. It's also possible that it is a side effect of the treatment she's received so far and will recover with time when she is off these drugs for awhile.
    
5. There's a lot of variability in how long people go between the SCT and relapsing, so it's hard to talk about a "usual" case for this question. Sometimes months, sometimes a decade or longer at the extremes.
    
6. There are several tests that your Mom's oncologist would want to perform regularly, say once a quarter. These include Serum (Blood) Protein Electrophoresis (SPEP), Urine Protein Electrophoresis (UPEP), Serum and Urine Immunofixation, measures of the immunoglobulins in your mother's blood, Freelite test to measure free light chains (FLC). Also Complete Blood Counts (CBC), and tests for calcium and creatinine. In addition to these quarterly tests, they may want to do some sort of image test like a skeletal survey or MRI or PET scan every year or every other year to make sure your mother's bones are doing well. You can get great information about these tests here (http://myeloma.org/pdfs/IMF-U-TestResults-2011_f1web.pdf).
    
7. Great question. It seems like your mother is in a very good spot with regard to how well she has responded to treatment so far. So I think you don't need to rush into the decision immediately. I'd suggest taking enough time to consult one or two other doctors, maybe a month or two. But I wouldn't put off the decision longer than that.
    
8. The maintenance meds suggested would be appropriate regardless of whether she does an SCT or not. It sounds like your Mom's oncologist is favoring Velcade as a maintenance med. Revlimid is also commonly used now for maintenance, so that is another one to consider.

Now, one point that came to my mind for a question you didn't ask: It might be good to consider collecting your mother's stem cells soon, regardless of what the next course of treatment she is going to do. In some cases, prolonged chemotherapy makes it more difficult to collect stem cells. By doing the collection sooner (now), rather than later, she'll have the stems cells and that will give her more flexibility in future treatment options.

I hope this is a help to you. There are other folks on the forum here who are much more knowledgeable than I am, so I hope those folks will feel free to correct me if I've mis-stated anything here. And, again as your Mom's oncologist suggested, I urge you to consult other doctors, especially myeloma specialists, regarding the questions you've asked.

Best wishes to your Mom and to you and the rest of your family as you consider next steps. Please keep us posted.

Mike