I was diagnosed about 9 months ago after my routine yearly medical exam. I showed no symptoms and after a PET/CT scan and other tests, no abnormalities. After a biopsy I was told that I have kappa IgA multiple myeloma. Not sure what the difference types are and if they need to treated differently.
For the past nine months, I have been on VRD (Velcade, Revlimid and dex) with anti-viral medication as a precaution. I am on for 21 days every 28 days. In February I had stem cell harvesting done and then continued with my regimen several weeks later. The treatments seem to have been working well and have had a complete remission as of this time. I don't seem to have any symptoms but it's hard to be sure, because I relegate any cold or other mishap to the treatments, but even if that is so they have been few.
My concern is what happens from here. My doctor had suggested that I now do a transplant and when I questioned him, in so much as the treatments seem to be having the desired effects and I am tolerating the medications, he changed course.
He is now planning another biopsy to confirm the treatment's findings and, if confirmed, continue with the medication. For the remainder of the year, continue as before - 3 weeks on, 1 week off. After the year, cut dosage to about half. Keep that going for a year or two, with continuous monitoring to its effectiveness and other possible side effects, and then cut the dosages again. He is hoping that if my good response to the medication continues, then after 5 years I would have a 33% chance of licking the disease. I am being treated at Mt. Sinai in New York and am told that the doctor is tops in this field.
I was concerned that he changed course after I commented that I would prefer not to have a transplant and then clarified that I wouldn't object if that was best course to take. Looks like I have a long road ahead of me.
Hoping to hear from others regarding their thoughts.
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Re: Diagnosed 9 months ago
This is a good problem to have!
If your response has yielded a stringent complete response (sCR), perhaps the doctor is reconsidering the need for a transplant. Unfortunately, there are no hard and fast rules on this. There are doctors who recommend a transplant upfront, but may change their minds presented with a patient who has an outstanding response to treatment.
The same is true, as you will find out later on, about maintenance.
If I were you, even though you are being seen at a center of excellence - you are in NYC, there are other equally good places for you to go for a second opinion. Your current doctor should not have a problem with you doing that. Most good docs don't. If he or she does, then you know you have a problem with doctor-itis!
Good luck and let us know what happens. I hope your response to treatment remains great!
If your response has yielded a stringent complete response (sCR), perhaps the doctor is reconsidering the need for a transplant. Unfortunately, there are no hard and fast rules on this. There are doctors who recommend a transplant upfront, but may change their minds presented with a patient who has an outstanding response to treatment.
The same is true, as you will find out later on, about maintenance.
If I were you, even though you are being seen at a center of excellence - you are in NYC, there are other equally good places for you to go for a second opinion. Your current doctor should not have a problem with you doing that. Most good docs don't. If he or she does, then you know you have a problem with doctor-itis!
Good luck and let us know what happens. I hope your response to treatment remains great!
Re: Diagnosed 9 months ago
I recently had another biopsy done. They did a "chromosome Analysis," a "FISH," and a "Plasma Cell Neoplasia Follow Up Panel".
The short of it, as analyzed by the doctors, was the result was as good as they would have wanted to see. There are some description and numbers on the results that I don't understand and that I would like to share if anyone can shed some light on it. I also did get a second opinion that agreed that there should be no rush for a transplant under the current circumstance and that decision can be revisited at any time.
Chromosome Analysis
Interpretation and Comment - An apparently normal karyotype was observed an all 20 mitotic cells analyzed. Specifically there was no significant numerical chromosomal abnormality and no clonal structural aberration of any chromosome detectable within the limits of resolution. Correlation with other clinical and hematologic data is recommended.
FISH Report
Negative for IGH rearrangement and TP53 (performed on enriched plasma cells after magnetic separation).
Interpretation and Comments: No IGH rearrangement. No deletion TP53 or centromere 17 (17p13.1, 17P10)
Plasma Cell Neoplasia Follow-Up Panel
** No clonal plasma cells detected.**
CD38+ plasma cells comprise 0.0.4% of analyzed white blood cells and exhibit polytypic staining for cytoplasmic light chains (cKappa 50%, cLambda 50%). Lymphocytes include polyclonal B cells, NK cells and immunophenotypically normal CD4+ and CD8+ T cells in normal proportions. Myeloid forms exhibit immunophenotypic evidence of normal maturation. Blasts are not increased.
Any input to the results above would be appreciated. Thanks.
The short of it, as analyzed by the doctors, was the result was as good as they would have wanted to see. There are some description and numbers on the results that I don't understand and that I would like to share if anyone can shed some light on it. I also did get a second opinion that agreed that there should be no rush for a transplant under the current circumstance and that decision can be revisited at any time.
Chromosome Analysis
Interpretation and Comment - An apparently normal karyotype was observed an all 20 mitotic cells analyzed. Specifically there was no significant numerical chromosomal abnormality and no clonal structural aberration of any chromosome detectable within the limits of resolution. Correlation with other clinical and hematologic data is recommended.
FISH Report
Negative for IGH rearrangement and TP53 (performed on enriched plasma cells after magnetic separation).
Interpretation and Comments: No IGH rearrangement. No deletion TP53 or centromere 17 (17p13.1, 17P10)
Plasma Cell Neoplasia Follow-Up Panel
** No clonal plasma cells detected.**
CD38+ plasma cells comprise 0.0.4% of analyzed white blood cells and exhibit polytypic staining for cytoplasmic light chains (cKappa 50%, cLambda 50%). Lymphocytes include polyclonal B cells, NK cells and immunophenotypically normal CD4+ and CD8+ T cells in normal proportions. Myeloid forms exhibit immunophenotypic evidence of normal maturation. Blasts are not increased.
Any input to the results above would be appreciated. Thanks.
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spreiserowicz - When were you/they diagnosed?: August, 2015
- Age at diagnosis: 62
Re: Diagnosed 9 months ago
Hi,
This is a similar story to mine. I had the same treatment in January 2012 and the same good results. I also changed my mind about the stem cell transplant and for the same reason. After six months of treatment I followed up with a year on 10 mg Revlimid every day as maintenance and three-monthly Zometa. The zero monoclonal situation continued until last autumn when my routine electrophoresis showed a tiny monoclonal peak in the beta-2 region, exactly the same as in 2012,
I felt absolutely 100% well, so it came as a shock. The peak increased every month, it is now at 3 g/dL (30 g/L) and this week the hematologist advised that we start treatment again next month. He gave me the option of a stem cell transplant or (reluctantly) a three drug combination treatment again including dex, Revlimid and a third novel therapy to be decided soon.
Personally I do not regret avoiding the stem cell transplant back in 2012 because I enjoyed an excellent quality of life using just dex / Revlimid / Velcade and even today when I am due to recommence treatment I feel fine and if it were not for the electrophoresis results I would not even be going to see the doctor as there are no symptoms at this point.
Best Wishes
This is a similar story to mine. I had the same treatment in January 2012 and the same good results. I also changed my mind about the stem cell transplant and for the same reason. After six months of treatment I followed up with a year on 10 mg Revlimid every day as maintenance and three-monthly Zometa. The zero monoclonal situation continued until last autumn when my routine electrophoresis showed a tiny monoclonal peak in the beta-2 region, exactly the same as in 2012,
I felt absolutely 100% well, so it came as a shock. The peak increased every month, it is now at 3 g/dL (30 g/L) and this week the hematologist advised that we start treatment again next month. He gave me the option of a stem cell transplant or (reluctantly) a three drug combination treatment again including dex, Revlimid and a third novel therapy to be decided soon.
Personally I do not regret avoiding the stem cell transplant back in 2012 because I enjoyed an excellent quality of life using just dex / Revlimid / Velcade and even today when I am due to recommence treatment I feel fine and if it were not for the electrophoresis results I would not even be going to see the doctor as there are no symptoms at this point.
Best Wishes
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Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
Re: Diagnosed 9 months ago
Hi spreiserowicz,
I wish I had the answers to your questions. They are our questions as well.
My husband was diagnosed 6+ months ago and we just completed his outpatient autologous stem cell transplant (ASCT). It wasn't an easy decision. Still he went through it very well (all outpatient, one platelet transfusion, a lot of worry, but no fever or vomiting and manageable abdominal cramping with profound fatigue). He is on Day +20 today with only mild anemia, which will correct over the next month. He has more viral risk but was profoundly hypogammaglobulinemic throughout standard chemotherapy.
He was SPEP and IPEP negative after his second of four cycles of Kyprolis, Revlimid, and dexamethasone (KRD). His PET scan went from lighting up everywhere to no uptake. His bone marrow plasma cell percentage went from 30% infiltration to 0.5% plasma cells with negative standard cytogenetics.
We had MRD testing, which came back as negative (this testing took weeks and only came back during the transplant). We went into the transplant without them. All good things. Our specialist didn't feel MRD testing had proven itself in altering therapeutic decisions, while acknowledging that it likely would in time. He was an advocate of early transplant for us - given age, overall health, and cytogenetics.
My husband had worse baseline cytogenetics at start (4:14) and a lot of boney disease, but no fractures. We also just can't wrap our heads around chronicity yet. We are still in the cure mentality, feeling a need to try for the longest progression-free and, hopefully, disease-free period, unwilling to acknowledge there may be no end to this marathon.
We elected to take the risk of the secondary cancers linked to the melphalan (which appears to be age related) for the possibility of the best possible outcome (no meds eventually and no recurrence, perhaps a cure, though not called such yet). Others may get there without the transplant.
I'm not sure if the testing you report are MRD (multicolour flow cytometry and deep-sequencing studies), which are usually cited as negative to 1:1,000,000 cells now. If not, you might ask your doctor about MRD.
Other than that, I'm glad you are doing so well. I wish you strength and insight in determining the path that is best for you.
I wish I had the answers to your questions. They are our questions as well.
My husband was diagnosed 6+ months ago and we just completed his outpatient autologous stem cell transplant (ASCT). It wasn't an easy decision. Still he went through it very well (all outpatient, one platelet transfusion, a lot of worry, but no fever or vomiting and manageable abdominal cramping with profound fatigue). He is on Day +20 today with only mild anemia, which will correct over the next month. He has more viral risk but was profoundly hypogammaglobulinemic throughout standard chemotherapy.
He was SPEP and IPEP negative after his second of four cycles of Kyprolis, Revlimid, and dexamethasone (KRD). His PET scan went from lighting up everywhere to no uptake. His bone marrow plasma cell percentage went from 30% infiltration to 0.5% plasma cells with negative standard cytogenetics.
We had MRD testing, which came back as negative (this testing took weeks and only came back during the transplant). We went into the transplant without them. All good things. Our specialist didn't feel MRD testing had proven itself in altering therapeutic decisions, while acknowledging that it likely would in time. He was an advocate of early transplant for us - given age, overall health, and cytogenetics.
My husband had worse baseline cytogenetics at start (4:14) and a lot of boney disease, but no fractures. We also just can't wrap our heads around chronicity yet. We are still in the cure mentality, feeling a need to try for the longest progression-free and, hopefully, disease-free period, unwilling to acknowledge there may be no end to this marathon.
We elected to take the risk of the secondary cancers linked to the melphalan (which appears to be age related) for the possibility of the best possible outcome (no meds eventually and no recurrence, perhaps a cure, though not called such yet). Others may get there without the transplant.
I'm not sure if the testing you report are MRD (multicolour flow cytometry and deep-sequencing studies), which are usually cited as negative to 1:1,000,000 cells now. If not, you might ask your doctor about MRD.
Other than that, I'm glad you are doing so well. I wish you strength and insight in determining the path that is best for you.
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rick - Name: rick
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: nov 2015
- Age at diagnosis: 50
Re: Diagnosed 9 months ago
I agree with Rick that it would be worth getting tested for MRD (if this has not already been done). If you are MRD negative, then you can probably safely defer the stem cell transplant for quite a while.
The only thing to be aware of is that there are different levels of MRD negative depending on the precise testing. The most sensitive test is known as "deep sequencing" or "PCR," which can detect one myeloma cell in a million.
The only thing to be aware of is that there are different levels of MRD negative depending on the precise testing. The most sensitive test is known as "deep sequencing" or "PCR," which can detect one myeloma cell in a million.
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Davidg - Name: David
- When were you/they diagnosed?: Feb 2015 - AL Amyloidosis
- Age at diagnosis: 53
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