Hi All,
My wife's mother was recently diagnosed with an aggressive form of Stage 3 myeloma. Prior to her diagnosis, she was being treated for sarcoidosis with heavy daily doses of prednisone. Once she was diagnosed, the doctors reduced the dosage of prednisone and the cancer went crazy. Two weeks after her initial blood workup, she was rushed to the ER with hypercalcemia.
She's had multiple pulmonary embolisms, and bone scans show she has many areas affected. Doctors gave her a prognosis of 6-18 months, and that's with aggressive treatment. She is currently being treated simultaneously with chemo and radiation. Doctors are considering a bone marrow / stem cell transplant using her own stem cells (not sure the technical name for it).
My question is, considering the fact that the stem cell treatment will basically eliminate her immune system for a period of several weeks, and her general poor condition overall, what are your thoughts on whether this treatment is worthwhile, or is it just stealing away some of the limited time she has left from her family?
Anyone on here either have sarcoidosis or know someone with it along with myeloma who can share their experience?
Forums
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Re: Stem cell transplant for multiple myeloma & sarcoidosis?
Autologous stem cell transplant is a long stay in the hospital. They basically bring your immune system to hardly anything, and then the theory is to introduce your own stem cell back into your body, and slowly your immune system comes back up and the multiple myeloma should theoretically be in remission. From a wife's prospective, read about it, husband was in hospital (isolation unit) for almost a month. I think it took a lot out of him.
Re: Stem cell transplant for multiple myeloma & sarcoidosis?
Hi Multiple MySharona,
I'm so sorry about your MIL.
You say that your MIL has an "aggressive form of Stage III myeloma." What do you mean by "aggressive form?" Generally, the stage of myeloma is not as important as the type of myeloma and whether or not she has any chromosomal abnormalities. There are a lot of people on this site who do.
In regards to treatments and a stem cell transplant, many people find that they feel better, and do better, once they start treatment for the multiple myeloma. Many of their symptoms start to disappear. Stem Cell Transplants require about a three week stay in the hospital. How fast someone feels back to normal after the SCT varies. EJ was in his early 50's when he had his SCT and was up and about very quickly, and back to work in under two months. But some people take a lot longer. I think the biggest complaint is fatigue.
Hope that helps. Good luck to you and your family.
Lyn
I'm so sorry about your MIL.
You say that your MIL has an "aggressive form of Stage III myeloma." What do you mean by "aggressive form?" Generally, the stage of myeloma is not as important as the type of myeloma and whether or not she has any chromosomal abnormalities. There are a lot of people on this site who do.
In regards to treatments and a stem cell transplant, many people find that they feel better, and do better, once they start treatment for the multiple myeloma. Many of their symptoms start to disappear. Stem Cell Transplants require about a three week stay in the hospital. How fast someone feels back to normal after the SCT varies. EJ was in his early 50's when he had his SCT and was up and about very quickly, and back to work in under two months. But some people take a lot longer. I think the biggest complaint is fatigue.
Hope that helps. Good luck to you and your family.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Stem cell transplant for multiple myeloma & sarcoidosis?
A bit difficult to answer prognosis questions without chromosome information. Many patients with "standard risk" myeloma will still present with bone disease and hypercalcemia and have complications of disease/immobility such as pulmonary embolism.
If she has recovered from the initial complications adequately, autologous bone marrow transplant after high dose chemotherapy is a reasonable treatment option. It generally requires about a 2-3 week hospitalization and another 2-3 months before feeling back to normal but can provide a long term disease remission period.
There is much debate currently about the need for "early" stem cell transplants. Clinical trials are ongoing to try and answer the question about optimal timing of transplant.
If she has recovered from the initial complications adequately, autologous bone marrow transplant after high dose chemotherapy is a reasonable treatment option. It generally requires about a 2-3 week hospitalization and another 2-3 months before feeling back to normal but can provide a long term disease remission period.
There is much debate currently about the need for "early" stem cell transplants. Clinical trials are ongoing to try and answer the question about optimal timing of transplant.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: Stem cell transplant for multiple myeloma & sarcoidosis?
Interesting, but I don't see any reference to SARCOIDOSIS. Anyone here want to clue me in as to what it is?? N.G.
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Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
Re: Stem cell transplant for multiple myeloma & sarcoidosis?
I have sarcoidosis with renal, lung and lymph nodes being implicated. Liver was, but it has normalised. I am using the Marshall Protocol, and have not been on any steroids.
Over the past two years, my hemoglobin levels have been drropping and I am now at 88, my lowest ever. The Olmetec (Benicar, olmesartan) I take in high doses can cause this, so when it was stable, we never worried.
In January, my doctor ran a protein electrophoresis test. It came back with an M protein of 1. She said we would re - test in a few months' time, and this I did earlier this week.
I still show the presence of an M - protein, which is stable at i, but the gammopathy screen says the following "An IgG kappa restriction was noted. Significance is unclear without further laboratory and clinical findings. Recommend urine testing for Bence Jones Protein."
IgG - 15.9 (7.2-16.9 g/L)
IgA - 3.17 (0.69-3.82 g/L)
Protein Electrophoresis:
Total protein - 75 (60-80)
Albumin - 46 (35-50)
Alpha 1 Globulin - 2 (1-3)
Alpha 2 Globulin - 7 (5-10)
Beta Globulin - 6 (5-12)
Gamma Globulin - 14 (6-14)
M1 Protein - 1
I am very concerned that I might have multiple myeloma rather than MGUS, but then again, I have sarcoidosis, so not sure how that can affect these tests.
Over the past two years, my hemoglobin levels have been drropping and I am now at 88, my lowest ever. The Olmetec (Benicar, olmesartan) I take in high doses can cause this, so when it was stable, we never worried.
In January, my doctor ran a protein electrophoresis test. It came back with an M protein of 1. She said we would re - test in a few months' time, and this I did earlier this week.
I still show the presence of an M - protein, which is stable at i, but the gammopathy screen says the following "An IgG kappa restriction was noted. Significance is unclear without further laboratory and clinical findings. Recommend urine testing for Bence Jones Protein."
IgG - 15.9 (7.2-16.9 g/L)
IgA - 3.17 (0.69-3.82 g/L)
Protein Electrophoresis:
Total protein - 75 (60-80)
Albumin - 46 (35-50)
Alpha 1 Globulin - 2 (1-3)
Alpha 2 Globulin - 7 (5-10)
Beta Globulin - 6 (5-12)
Gamma Globulin - 14 (6-14)
M1 Protein - 1
I am very concerned that I might have multiple myeloma rather than MGUS, but then again, I have sarcoidosis, so not sure how that can affect these tests.
Re: Stem cell transplant for multiple myeloma & sarcoidosis?
I agree with Nipon Ginko. Do you guys read the questions before replying? Chemo brain can be such a b, huh? I don't think it is anyone's business what chromosomes are involved, or how seemingly aggressive it is. Multiple MySharona asked if you or anyone you know have both multiple myeloma and sarcoidosis, so that Multiple MySharona can help his mother-in-law weigh the risks of a bone marrow transplant -- for someone who has multiple myeloma and sarcoidosis.
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InMyBones
Re: Stem cell transplant for multiple myeloma & sarcoidosis?
BTW, it is the most aggressive form of multiple myeloma the MD has ever seen, according to the patient's specific chromosomal abnormalities. That's what Multiple MySharona said.
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InMyBones
Re: Stem cell transplant for multiple myeloma & sarcoidosis?
Am I'm missing something? I don't see where MySharona said his MIL has "the most aggressive form of Multiple Myeloma the MD has ever seen according to the patient's specific chromosomal abnormalities."
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HLK
9 posts
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