I am a 76 year old male and I was diagnosed with smoldering multiple myeloma 3 years and 2 months ago. I have not undergone any treatment. The recommended treatment would presumably be Revlimid and dexamethasone.
My biggest issue is anemia. My hemoglobin typically is in the 9.5 ± range. It recently dropped to below 8 and I was given two units of whole blood. This also occurred a year ago this coming August.
What can be done to increase my hemoglobin? Would beginning treatment of Revlimid and dexamethasone make a difference?
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Re: What should I do about my anemia?
Sorry to hear about the anemia you've been experiencing, Robert.
It seems a bit odd that you are still classified as having smoldering myeloma now that you are experiencing anemia. Normally, anemia would be considered one of the "CRAB" symptoms that would change your diagnosis from smoldering to symptomatic multiple myeloma.
Have you discussed the anemia with a hematologist/oncologist, particularly one who is a myeloma specialist?
Also, have you had any testing done lately to see if you have any other symptoms of myeloma, like bone lesions, elevated calcium levels, or changes in your blood protein levels (M-spike) or the plasma cell percentage in your bone marrow (which would be determined by a bone marrow biopsy)?
I do hope the anemia is a some kind of a blip unrelated to your myeloma.
It seems a bit odd that you are still classified as having smoldering myeloma now that you are experiencing anemia. Normally, anemia would be considered one of the "CRAB" symptoms that would change your diagnosis from smoldering to symptomatic multiple myeloma.
Have you discussed the anemia with a hematologist/oncologist, particularly one who is a myeloma specialist?
Also, have you had any testing done lately to see if you have any other symptoms of myeloma, like bone lesions, elevated calcium levels, or changes in your blood protein levels (M-spike) or the plasma cell percentage in your bone marrow (which would be determined by a bone marrow biopsy)?
I do hope the anemia is a some kind of a blip unrelated to your myeloma.
Re: What should I do about my anemia?
Hello Robert,
I concur with Cheryl G's comments and I do hope that you get some advice from a medical professional on the issue.
Anemia is an indicator of active myeloma and is typically treated. Treatment is always a personal choice of course, but it will likely resolve your anemia. Being transfusion dependent comes with it's own risks, such as organ damage and poor quality of life.
Best Regards,
jhorner
I concur with Cheryl G's comments and I do hope that you get some advice from a medical professional on the issue.
Anemia is an indicator of active myeloma and is typically treated. Treatment is always a personal choice of course, but it will likely resolve your anemia. Being transfusion dependent comes with it's own risks, such as organ damage and poor quality of life.
Best Regards,
jhorner
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jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
Re: What should I do about my anemia?
We share similar circumstance being still classified as smoldering myeloma and low hemoglobin -- mine not quite as low as yours, but below the International Myeloma Working Group standard of <10.0 or 2.0 grams lower than the lower limit to satisfy the CRAB criteria.
But unfortunately I have discovered over my 3 years post diagnosis of smoldering myeloma that some cancer centers and oncologists do not consider the CRAB criteria for treatment. Only when end organ damage is present. Anemia does not seem to apply as end organ damage to some oncologists.
I was told the same thing when I asked if my HGB dropped below 10.0 -- what would happen? -- and was told we could give you some blood products to increase your hemoglobin. My WBC count hovers around 2.2 to 2.4 and a platelet count of 70-80. My last bone marrow I had a 60-70% plasma cell population with a mPC of 95% with 3 to 4 copies of 1q21 and partial deletion of chromosome 13 including RB1 whatever that means on FISH.
However my BUN and creatinine levels are well within the normal range along with my calcium. Globulin level of 5.1 due to increased total protein and low albumin. The kicker that confuses me is my M Spike has increased from 1.9 - 2.1 to 2.7 -2.9 g/dl in the last 6 months but does not raise any flags with the oncologist.
I have no bone issues and have had PET/CT scan of my entire body. It was suggested that I might want to look into a clinical trial for smoldering myeloma. Well, for most of the smoldering myeloma clinical trials, I do not meet the criteria due to the low HGB and platelet count and a ANC of 1-1.5. So I guess we are in limbo.
The unfortunate thing for me is the cancer center I am currently going to is 30 minutes from my home. I am at a point to possible go to a Mayo Clinic center 4 hours away, or just let nature run its course, whatever that might be.
Hope things work out for you and would suggest a second opinion from another oncologist if possible. If treatment is an option, then that is something to consider. It is ultimately your decision.
Good luck
But unfortunately I have discovered over my 3 years post diagnosis of smoldering myeloma that some cancer centers and oncologists do not consider the CRAB criteria for treatment. Only when end organ damage is present. Anemia does not seem to apply as end organ damage to some oncologists.
I was told the same thing when I asked if my HGB dropped below 10.0 -- what would happen? -- and was told we could give you some blood products to increase your hemoglobin. My WBC count hovers around 2.2 to 2.4 and a platelet count of 70-80. My last bone marrow I had a 60-70% plasma cell population with a mPC of 95% with 3 to 4 copies of 1q21 and partial deletion of chromosome 13 including RB1 whatever that means on FISH.
However my BUN and creatinine levels are well within the normal range along with my calcium. Globulin level of 5.1 due to increased total protein and low albumin. The kicker that confuses me is my M Spike has increased from 1.9 - 2.1 to 2.7 -2.9 g/dl in the last 6 months but does not raise any flags with the oncologist.
I have no bone issues and have had PET/CT scan of my entire body. It was suggested that I might want to look into a clinical trial for smoldering myeloma. Well, for most of the smoldering myeloma clinical trials, I do not meet the criteria due to the low HGB and platelet count and a ANC of 1-1.5. So I guess we are in limbo.
The unfortunate thing for me is the cancer center I am currently going to is 30 minutes from my home. I am at a point to possible go to a Mayo Clinic center 4 hours away, or just let nature run its course, whatever that might be.
Hope things work out for you and would suggest a second opinion from another oncologist if possible. If treatment is an option, then that is something to consider. It is ultimately your decision.
Good luck
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RichardL
Re: What should I do about my anemia?
Hello RichardL.
Go to the Mayo Clinic! Don't wait until you are transfusion dependent. I drive 4 hours to Boston to see doctors all the time and I know that several other folks on this forum drive much further than that. You are fortunate to have that caliber of myeloma specialists so close to you!
Best,
jhorner
Go to the Mayo Clinic! Don't wait until you are transfusion dependent. I drive 4 hours to Boston to see doctors all the time and I know that several other folks on this forum drive much further than that. You are fortunate to have that caliber of myeloma specialists so close to you!
Best,
jhorner
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jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
Re: What should I do about my anemia?
Robert and Richard,
So sorry to hear about your condition and uncertainty.
I agree with the others of the need to be seen by a specialist at a large cancer research institution such as the Mayo Clinic.
I too had uncertainty in the activeness of my myeloma and had persistent anemia as my only symptom. My Hgb started around 9 and dropped to 6.5 - 7 g/dl. I was getting blood transfusions every 2 weeks eventually as I had developed red blood cell aplasia. There are things you can do to increase RBCs, such as EPO injections, but there is a caution that EPO may cause red blood cell aplasia.
Other labs had shown an increased lambda light chain concentration and decreased kappa/lambda ratio. BMB showed only 30% plasma cells with erythroid dysplasia in the bone marrow.
There were questions around the diagnosis of myeloma and/or MDS. Even though the plasma cell % in the marrow was so low, the specialists I was seeing suspected the anemia to be secondary to an immune disregulation/autoimmunity to the myeloma. So it was decided we should treat the myeloma. We treated with Velcade/dex (VD). There was some fear the Revlimid would drop the blood counts even more. As we started treatment, the anemia improved within the first cycle as well as the myeloma and erythroid dysplasia I was presenting.
My advice would be to see a myeloma specialist and talk about all of your options so you can make the best decision for you.
Best of Luck
Jen
So sorry to hear about your condition and uncertainty.
I agree with the others of the need to be seen by a specialist at a large cancer research institution such as the Mayo Clinic.
I too had uncertainty in the activeness of my myeloma and had persistent anemia as my only symptom. My Hgb started around 9 and dropped to 6.5 - 7 g/dl. I was getting blood transfusions every 2 weeks eventually as I had developed red blood cell aplasia. There are things you can do to increase RBCs, such as EPO injections, but there is a caution that EPO may cause red blood cell aplasia.
Other labs had shown an increased lambda light chain concentration and decreased kappa/lambda ratio. BMB showed only 30% plasma cells with erythroid dysplasia in the bone marrow.
There were questions around the diagnosis of myeloma and/or MDS. Even though the plasma cell % in the marrow was so low, the specialists I was seeing suspected the anemia to be secondary to an immune disregulation/autoimmunity to the myeloma. So it was decided we should treat the myeloma. We treated with Velcade/dex (VD). There was some fear the Revlimid would drop the blood counts even more. As we started treatment, the anemia improved within the first cycle as well as the myeloma and erythroid dysplasia I was presenting.
My advice would be to see a myeloma specialist and talk about all of your options so you can make the best decision for you.
Best of Luck
Jen
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Jbodnar - Name: Jen
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2012
- Age at diagnosis: 45
Re: What should I do about my anemia?
Jen -- Thanks for your advice and for sharing your journey with us.
I do not plan on having blood products as an initial treatment plan, I can assure you. As I said, I would prefer to let nature take its course first. But, that being said, I will definitely try and seek other treatment options or oncologists, if that is what it takes. I know I am no doctor and I did not stay at a Holiday Inn last night
( I still possess some humor). It just does not make sense to me to put a band aid on a wound if you do not treat the wound first.
Again thanks for your support.
Take Care
Richard
I do not plan on having blood products as an initial treatment plan, I can assure you. As I said, I would prefer to let nature take its course first. But, that being said, I will definitely try and seek other treatment options or oncologists, if that is what it takes. I know I am no doctor and I did not stay at a Holiday Inn last night
( I still possess some humor). It just does not make sense to me to put a band aid on a wound if you do not treat the wound first. Again thanks for your support.
Take Care
Richard
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Richard L - Name: Richard
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 03/02/2011
- Age at diagnosis: 60
7 posts
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