Recently my father (age 51) was diagnosed with Multiple Myeloma, he doesn't even have serious symptoms, X-Ray images where absolutely normal indicating that there's not bone damage, calcium levels are normal. He is now dealing with Melphalan 7mg / day and Prednisone for 4 days then a month of rest and back to melphalan. Treatment is fot 6 months. I would like to know others opinions here
Thanks a lot guys !
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Re: Melphalan and Prednisone treatment on first stage
I was diagnosed with multiple myeloma Nov., 2003, at the age of 55. Like your dad, my X-rays showed no bone lesions, and I felt fine. However, my M-protein and other labs, including the plasma levels of my bone marrow biopsy, indicated I should be considered stage II. My oncologist consulted with doctors from the Mayo Clinic, MD Anderson Cancer Center, and one other hospital that I have forgotten the name. All but the doctor at MDACC felt I should begin chemotherapy. After much prayer, and consultation with my oncologists, I (We) decided to not begin any treatments, and to monitor my labs and X-rays. So, I was considered to have smoldering myeloma. At that time I was told by my oncologist that I probably good go for about 5 years before requiring any chemo. 4 years and 6 months later I started treatments at MD Anderson Cancer Center.
This said, each of us who are diagnosed with multiple myeloma are different. Depends on so many things. What I elected to do may not be right for someone else. All any of us can do is become educated about multiple myeloma and our options. Trust in our doctors is also very important. I have always told my doctors that they my have an M.D. after their name, but it is my life and that I am going to become almost as smart as they are concerning multiple myeloma. I highly recommend you continue your contact with The Myeloma Beacon, plus also check out information provided by the International Myeloma Foundation (IMF) and the Multiple Myeloma Research Foundation (MMRF).
This said, each of us who are diagnosed with multiple myeloma are different. Depends on so many things. What I elected to do may not be right for someone else. All any of us can do is become educated about multiple myeloma and our options. Trust in our doctors is also very important. I have always told my doctors that they my have an M.D. after their name, but it is my life and that I am going to become almost as smart as they are concerning multiple myeloma. I highly recommend you continue your contact with The Myeloma Beacon, plus also check out information provided by the International Myeloma Foundation (IMF) and the Multiple Myeloma Research Foundation (MMRF).
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bbrown687782 - Name: Bill
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Nov. 2003
- Age at diagnosis: 56
Re: Melphalan and Prednisone treatment on first stage
Hello,
Over decades of teating and studying thousands of patients experts on myeloma developed a treatment appraoch to guide physicians on how to diagnose and when to treat multiple myeloma. Ultimately this resulted in the "CRAB" criteria which has served us well for many years. The concept is that if a patient has at least 10% plasma cells in their marrow and any of the CRAB criteria (even if they feel fine) they will begin to have serious problems wih myeloma in the very near future and should therefore be treated. I suspect that your father had something from the CRAB criteria or had a high percentage of plasma cells in the marrow (>60%) or his physicians would not have treated him.
I am a surprised at the treatment. Melphalan and Prednisone are inadequate therapies in 2013 and could be expected to have only a 35% chance of a partial response or better.
Best of luck in fighting this challenging disease
Over decades of teating and studying thousands of patients experts on myeloma developed a treatment appraoch to guide physicians on how to diagnose and when to treat multiple myeloma. Ultimately this resulted in the "CRAB" criteria which has served us well for many years. The concept is that if a patient has at least 10% plasma cells in their marrow and any of the CRAB criteria (even if they feel fine) they will begin to have serious problems wih myeloma in the very near future and should therefore be treated. I suspect that your father had something from the CRAB criteria or had a high percentage of plasma cells in the marrow (>60%) or his physicians would not have treated him.
I am a surprised at the treatment. Melphalan and Prednisone are inadequate therapies in 2013 and could be expected to have only a 35% chance of a partial response or better.
Best of luck in fighting this challenging disease
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Melphalan and Prednisone treatment on first stage
Hi there. My Mom was diagnosed with stage II/III IgG kappa multiple myeloma in May 2010. After being in remission with very little of Revlimid/dex for more than a year, then not responding to lowered (due to intolerance) Rev/dex doses, and then having acute worsening for months with cancer worsening, not responding to 7 weeks of subcu Velcade/IV dex, my Mom is responding SPECTACULARLY to melphalan and prednisone with with minimal side effects.
In spite of it being an older treatment - it seems to me, if it works with few side effects, then it should still be a very viable treatment. I wish they had started my Mom out on this from the get to, to be honest. She has been on 3 rounds now (that is, 8 mg of melphalan and 60 mg of prednisone for 4 days straight then off for 3 weeks, then tested to see where numbers are). After 7 weeks of Velcade/dex and her multiple myeloma markers going through the roof - highest they have ever been - with her struggling with sky high calcium (needing IV fluids weekly) and kidney involvement and anemia - once they got her on the MP, her numbers started dropping so fast our heads are spinning.
We are awaiting her multiple myeloma markers after round 3 - she was close to remission on the serum FLC after round 2! Her kidney function has returned to normal (she has maintained great/normal kidney function until the acute worsening in Oct 2012), her total protein has come down from 13 to 8.9 (with this lab, 8.5 being high end of normal), and her calcium dropped from 12 to totally normal after just ONE round of MP. She did not respond like this to Rev/dex at all - nor to the Velcade (which did nothing). Actually, my Mom's onco wanted her on MP instead of Velcade/dex because my Mom wanted pills at home, not having to go to office for chemo... but after a second opinion doctor at OSU recommend Velcace, my Mom's onco concurred. I can't believe they let her go 7 full weeks without checking the multiple myeloma markers to KNOW she was not responding. It seemed obvious to me that she was not responding at all because her chem panel showed calcium kept going sky high and her kidney function was not improving (both indicative of worsening multiple myeloma), and her total protein kept going up. Anyway, thank goodness (once he saw Velcade did nothing and her multiple myeloma had gotten the worst yet - he was not sure of the prognosis at that point) that he quickly instituted the MP and kept my Mom going (with me constantly at them) to watch weekly chem panel/CBC and to give my Mom IV fluids and blood transfusions.
I've written about the MP already, if you search the forum for my name, you can read more in depth/similar info that I wrote about my Mom's experience with MP, as well as her side effects. they are minimal - she has itching usually the first day (once in her legs/feet, once in her stomach - but NO rash) that was taken care of with Benadryl; sleeplessness from the dex, taken care of by Benadryl; and some diarrhea. She usually has a short-lived worsening of her back pain for half a day that goes away. About a week after round 2, she has had a mildly itchy rash on her legs. It is taken care of with Benadryl cream.
My Mom's onco didn't mention about her being on MP for 6 weeks... two oncos told her once she is in remission, whether it is 2 rounds or more, that she will go off it and then have close watch of multiple myeloma markers.
I'm sorry I cannot offer more opinion about your father being on MP with a normal calcium, no bone damage, etc. - I'm assuming the multiple myeloma markers are why they started treatment (IgG, serum free light chains, M protein, etc.)? I am surely not a doctor nor healthcare provider, but from what I have seen my Mom experience with the various multiple myeloma treatments and read from others, my Mom's experience with MP has been VERY good with VERY quick response compared to all of the latest greatest supposedly better working and less side effects new stuff... I know if I had a another close family member or friend get diagnosed with multiple myeloma, I would actually urge them to consider this treatment over the others. Rev/dex was pretty devastating stuff for my mother (6 days of the full dose treatment put her in the hospital, and after she recovered from that, she went back on for another week with more serious side effects - but that 12 days of misery it did put her in remission for over a year).
Wishing your father well!
In spite of it being an older treatment - it seems to me, if it works with few side effects, then it should still be a very viable treatment. I wish they had started my Mom out on this from the get to, to be honest. She has been on 3 rounds now (that is, 8 mg of melphalan and 60 mg of prednisone for 4 days straight then off for 3 weeks, then tested to see where numbers are). After 7 weeks of Velcade/dex and her multiple myeloma markers going through the roof - highest they have ever been - with her struggling with sky high calcium (needing IV fluids weekly) and kidney involvement and anemia - once they got her on the MP, her numbers started dropping so fast our heads are spinning.
We are awaiting her multiple myeloma markers after round 3 - she was close to remission on the serum FLC after round 2! Her kidney function has returned to normal (she has maintained great/normal kidney function until the acute worsening in Oct 2012), her total protein has come down from 13 to 8.9 (with this lab, 8.5 being high end of normal), and her calcium dropped from 12 to totally normal after just ONE round of MP. She did not respond like this to Rev/dex at all - nor to the Velcade (which did nothing). Actually, my Mom's onco wanted her on MP instead of Velcade/dex because my Mom wanted pills at home, not having to go to office for chemo... but after a second opinion doctor at OSU recommend Velcace, my Mom's onco concurred. I can't believe they let her go 7 full weeks without checking the multiple myeloma markers to KNOW she was not responding. It seemed obvious to me that she was not responding at all because her chem panel showed calcium kept going sky high and her kidney function was not improving (both indicative of worsening multiple myeloma), and her total protein kept going up. Anyway, thank goodness (once he saw Velcade did nothing and her multiple myeloma had gotten the worst yet - he was not sure of the prognosis at that point) that he quickly instituted the MP and kept my Mom going (with me constantly at them) to watch weekly chem panel/CBC and to give my Mom IV fluids and blood transfusions.
I've written about the MP already, if you search the forum for my name, you can read more in depth/similar info that I wrote about my Mom's experience with MP, as well as her side effects. they are minimal - she has itching usually the first day (once in her legs/feet, once in her stomach - but NO rash) that was taken care of with Benadryl; sleeplessness from the dex, taken care of by Benadryl; and some diarrhea. She usually has a short-lived worsening of her back pain for half a day that goes away. About a week after round 2, she has had a mildly itchy rash on her legs. It is taken care of with Benadryl cream.
My Mom's onco didn't mention about her being on MP for 6 weeks... two oncos told her once she is in remission, whether it is 2 rounds or more, that she will go off it and then have close watch of multiple myeloma markers.
I'm sorry I cannot offer more opinion about your father being on MP with a normal calcium, no bone damage, etc. - I'm assuming the multiple myeloma markers are why they started treatment (IgG, serum free light chains, M protein, etc.)? I am surely not a doctor nor healthcare provider, but from what I have seen my Mom experience with the various multiple myeloma treatments and read from others, my Mom's experience with MP has been VERY good with VERY quick response compared to all of the latest greatest supposedly better working and less side effects new stuff... I know if I had a another close family member or friend get diagnosed with multiple myeloma, I would actually urge them to consider this treatment over the others. Rev/dex was pretty devastating stuff for my mother (6 days of the full dose treatment put her in the hospital, and after she recovered from that, she went back on for another week with more serious side effects - but that 12 days of misery it did put her in remission for over a year).
Wishing your father well!
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Twi - Name: Twi
- Who do you know with myeloma?: My wonderful Mom, Janet
- When were you/they diagnosed?: May 2010
- Age at diagnosis: 70
Re: Melphalan and Prednisone treatment on first stage
After going from MGUS to SMM in the Spring of 2012, I sought opinions from the top doctors in the field. I met with Dr. Jagannath at Mt. Sinai. He considered me intermediate risk. I also went to the NIH where they thought I was high risk.
I entered a clinical trial with Dr. Jagannath at Mt. Sinai. It was a bone strengthening drug that may also slow the myeloma cells in the bone marrow.
After 6 months on it, all scans showed that I had no bone involvement. But, due to rising myeloma markers(protein, IgG, M-Spike and FLC) the doctor suggested we start treatment.
I recently finished my first cycle of Veclade SubQ with Cytoxan (first 2 rounds only) and 50mg prednisone every other day for 3 days.
My Myeloma numbers have dropped about 70%.
M-Spike was 4.14 before treatment. It's now 1.42
My IgG was 5331. It's now 1572
Kappa Serum is now within normal range.
I'm still not sure what stage I was considered as I was still asymptomatic. But, I feel we made the right decision. The reason to start was because I'm strong and to prevent any end organ damage. Best news is that I've had no side effects.
Next cycle will be the same until I get the prescription for 15mg of Revlimid to replace the Cytoxan.
I made a decision to replace the Dex with Prednisone. Wasn't happy hearing about the side effects of that drug. The doctor agreed with me without hesitation.
I entered a clinical trial with Dr. Jagannath at Mt. Sinai. It was a bone strengthening drug that may also slow the myeloma cells in the bone marrow.
After 6 months on it, all scans showed that I had no bone involvement. But, due to rising myeloma markers(protein, IgG, M-Spike and FLC) the doctor suggested we start treatment.
I recently finished my first cycle of Veclade SubQ with Cytoxan (first 2 rounds only) and 50mg prednisone every other day for 3 days.
My Myeloma numbers have dropped about 70%.
M-Spike was 4.14 before treatment. It's now 1.42
My IgG was 5331. It's now 1572
Kappa Serum is now within normal range.
I'm still not sure what stage I was considered as I was still asymptomatic. But, I feel we made the right decision. The reason to start was because I'm strong and to prevent any end organ damage. Best news is that I've had no side effects.
Next cycle will be the same until I get the prescription for 15mg of Revlimid to replace the Cytoxan.
I made a decision to replace the Dex with Prednisone. Wasn't happy hearing about the side effects of that drug. The doctor agreed with me without hesitation.
-
Stan W. - Name: Stan
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: SMM-April 2012
- Age at diagnosis: 58
5 posts
• Page 1 of 1