I had mentioned in one of my earlier posts that my hemoglobin and RBC had been slowly trending lower since my diagnosis. Neither is at a current level to flag me as having anemia from a multiple myeloma perspective, and my onc is not convinced that this is even due to my SMM. But my GP and onc both said to definitely keep an eye on it.
It's plausible that the major changes I've made in my diet since my smoldering myeloma diagnosis 19 months ago might have led to this. So, with my onc's approval, I started taking a 65mg ferrous sulfate supplement and I'm on top of other key vitamin levels such as B6, B12, folic acid, vitamin C, etc.
So, we should know in a couple of months whether or not this effort will improve my RBC and hemogloblin numbers.
My question is this. Let's assume for a moment that my multiple myeloma had advanced to the point where the disease was causing my RBC and hemoglobin numbers to drop (as I understand it, basically by crowding out my healthy red blood cells). If this were the case, would any amount of dietary changes help counteract the anemia-producing effects of multiple myeloma, or would the disease itself completely dominate the impact on the RBC and hemogloblin levels?
Forums
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Counteracting anemia
Hi, I'm sure you've seen my posting's regarding my husband's slide into myeloma, so I'll save us all that. And I don't thing I can answer your questions appropriately. But what I do know is that, in his case after open heart surgery, none of the numbers in his cbc were normal. And they never became normal over the next nine months.
My point is that everything seemed to be wrong. The rbc distribution width etc. I don't know if that is the case when someone "simply" becomes anemic. I would have to go thru some of his labs to know exactly which components of the cbc were affected, but it was many of them. And he was not taking supplements at the time. It really surprised me after his diagnosis that no one picked up on it sooner. His GP did comment on the anemia in the horrible month leading up to diagnosis. But we never got far enough to know if he would have pursued it further.
Hope this helps a little.
My point is that everything seemed to be wrong. The rbc distribution width etc. I don't know if that is the case when someone "simply" becomes anemic. I would have to go thru some of his labs to know exactly which components of the cbc were affected, but it was many of them. And he was not taking supplements at the time. It really surprised me after his diagnosis that no one picked up on it sooner. His GP did comment on the anemia in the horrible month leading up to diagnosis. But we never got far enough to know if he would have pursued it further.
Hope this helps a little.
Re: Counteracting anemia
Hi Multibilly,
I was diagnosed as a smolderer in August, 2011. At the time, my hemoglobin was about 15. Over the next nine months, it gradually got lower and lower to the mid-11's. I tried all the suggested hemoglobin builders -- spirulina, beet juice, etc. Nothing really helped, as it was clear in hindsight that my marrow space was infiltrated up to 80% with clonal plasma cells.
At the end of April, 2012, I had a pulmonary embolism (no one told me of this risk while I was "watching and waiting") that landed me in the hospital for five days and my hemoglobin tanked to the 9's. I then graduated to active myeloma.
After therapy with carfilzomib [Kyprolis] / Revlimid / dex in a clinical trial, my hemoglobin skyrocketed to optimally normal levels as the myeloma was chopped away in a couple months, and it has stayed between the mid-15's to 17 ever since and, no, I am not blood doping!
While in the trial and to this day, I took / take a food based multivitamin loaded with B12, etc. and I drink two glasses of beet juice (from powder) with kefir every day. In endurance sports like cycling, etc., it has become a bit of a craze to boost performance with beet juice powder. There are many brands marketed in the sports world. Science seems to support this. Regardless of that, it seems to work for me and I feel great.
Good luck and thanks for all of your comments throughout the MB. I have learned a lot from you. Best. Terry L.
I was diagnosed as a smolderer in August, 2011. At the time, my hemoglobin was about 15. Over the next nine months, it gradually got lower and lower to the mid-11's. I tried all the suggested hemoglobin builders -- spirulina, beet juice, etc. Nothing really helped, as it was clear in hindsight that my marrow space was infiltrated up to 80% with clonal plasma cells.
At the end of April, 2012, I had a pulmonary embolism (no one told me of this risk while I was "watching and waiting") that landed me in the hospital for five days and my hemoglobin tanked to the 9's. I then graduated to active myeloma.
After therapy with carfilzomib [Kyprolis] / Revlimid / dex in a clinical trial, my hemoglobin skyrocketed to optimally normal levels as the myeloma was chopped away in a couple months, and it has stayed between the mid-15's to 17 ever since and, no, I am not blood doping!
While in the trial and to this day, I took / take a food based multivitamin loaded with B12, etc. and I drink two glasses of beet juice (from powder) with kefir every day. In endurance sports like cycling, etc., it has become a bit of a craze to boost performance with beet juice powder. There are many brands marketed in the sports world. Science seems to support this. Regardless of that, it seems to work for me and I feel great.
Good luck and thanks for all of your comments throughout the MB. I have learned a lot from you. Best. Terry L.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Counteracting anemia
Hi Multibilly, at the time of my diagnosis, my hemoglobin was a bit low, at the lower end of the normal range. I can understand in retrospect why I was tired and did not have my usual energy. I did have 50% plasma cells in my marrow, according to a bone marrow biopsy (BMB), so that probably explains why I was tired. I was fighting cancer!!
I am sure you will follow closely with medical tests your smoldering multiple myeloma. You do seem to have a lot of access to any tests, and are also extremely knowledgeable for a patient, as well as being helpful to others!
Best wishes, hope you get this sorted out soon.
I am sure you will follow closely with medical tests your smoldering multiple myeloma. You do seem to have a lot of access to any tests, and are also extremely knowledgeable for a patient, as well as being helpful to others!
Best wishes, hope you get this sorted out soon.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Counteracting anemia
I was diagnosed with smoldering myeloma in August 2011 with levels of hemoglobin around 13 and an M spike around 5 (or 50 depending on the scale). Over the next 6 months, my M spike remained stable - I was taking ~ 8 gms curcumin daily but have no idea if that is the reason - but my hemoglobin slowly plummeted to 8.1. At that point I started treatment.
When I asked the oncologist about this, he felt that this probably wasn't due to crowding out, as the spike was the same. Rather, it was due to disease progression leading to changes in things such as the levels of cell signaling molecules.
The point is, I am not aware of ANY WAY to boost hemoglobin by non-medical procedures. You have to knock back the disease. And I did.
When I asked the oncologist about this, he felt that this probably wasn't due to crowding out, as the spike was the same. Rather, it was due to disease progression leading to changes in things such as the levels of cell signaling molecules.
The point is, I am not aware of ANY WAY to boost hemoglobin by non-medical procedures. You have to knock back the disease. And I did.
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Dan in SD
Re: Counteracting anemia
Dan,
This is an interesting response regarding what may have caused your hemoglobin to drop and one which I had not heard before. When I did some research on this, I came up with this:
"In anemia of multiple myeloma, hepcidin is induced by increased bone morphogenetic protein 2", K. Maes et al., Blood, November 4, 2010; 116 (18) [see abstract below]
BTW, I should make it clear that the last thing I want to do is mask the presence of a CRAB symptom. That is, I don't want to create a situation where my RBC and hemoglobin "appear" to look OK through the use of iron and Vitamin B supplementation, when in fact there is an underlying disease process going on that would normally indicate otherwise. Hence my original question.
I'm probably getting unnecessarily into the nits on this and should just go for a hike
Abstract:
Hepcidin is the principal iron-regulatory hormone and a pathogenic factor in anemia of inflammation. Patients with multiple myeloma (multiple myeloma) frequently present with anemia. We showed that multiple myeloma patients had increased serum hepcidin, which inversely correlated with hemoglobin, suggesting that hepcidin contributes to MM-related anemia. Searching for hepcidin-inducing cytokines in multiple myeloma, we quantified the stimulation of hepcidin promoter-luciferase activity in HuH7 cells by multiple myeloma sera. multiple myeloma sera activated the hepcidin promoter significantly more than did normal sera. We then examined the role of bone morphogenetic proteins (BMPs) and interleukin-6 (IL-6), the major transcriptional regulators of hepcidin. Mutations in both BMP-responsive elements abrogated the activation dramatically, while mutations in the IL-6–responsive signal transducer and activator of transcription 3-binding site (STAT3-BS) had only a minor effect. Cotreatment with anti–BMP-2/4 or noggin-Fc blocked the promoter induction with all multiple myeloma sera, anti–IL-6 blocked it with a minority of sera, whereas anti–BMP-4, -6, or -9 antibodies had no effect. BMP-2–immunodepleted multiple myeloma sera had decreased promoter stimulatory capacity, and BMP-2 concentrations in multiple myeloma sera were significantly higher than in normal sera. Our results demonstrate that BMP-2 is a major mediator of the hepcidin stimulatory activity of multiple myeloma sera.
This is an interesting response regarding what may have caused your hemoglobin to drop and one which I had not heard before. When I did some research on this, I came up with this:
"In anemia of multiple myeloma, hepcidin is induced by increased bone morphogenetic protein 2", K. Maes et al., Blood, November 4, 2010; 116 (18) [see abstract below]
BTW, I should make it clear that the last thing I want to do is mask the presence of a CRAB symptom. That is, I don't want to create a situation where my RBC and hemoglobin "appear" to look OK through the use of iron and Vitamin B supplementation, when in fact there is an underlying disease process going on that would normally indicate otherwise. Hence my original question.
I'm probably getting unnecessarily into the nits on this and should just go for a hike
Abstract:
Hepcidin is the principal iron-regulatory hormone and a pathogenic factor in anemia of inflammation. Patients with multiple myeloma (multiple myeloma) frequently present with anemia. We showed that multiple myeloma patients had increased serum hepcidin, which inversely correlated with hemoglobin, suggesting that hepcidin contributes to MM-related anemia. Searching for hepcidin-inducing cytokines in multiple myeloma, we quantified the stimulation of hepcidin promoter-luciferase activity in HuH7 cells by multiple myeloma sera. multiple myeloma sera activated the hepcidin promoter significantly more than did normal sera. We then examined the role of bone morphogenetic proteins (BMPs) and interleukin-6 (IL-6), the major transcriptional regulators of hepcidin. Mutations in both BMP-responsive elements abrogated the activation dramatically, while mutations in the IL-6–responsive signal transducer and activator of transcription 3-binding site (STAT3-BS) had only a minor effect. Cotreatment with anti–BMP-2/4 or noggin-Fc blocked the promoter induction with all multiple myeloma sera, anti–IL-6 blocked it with a minority of sera, whereas anti–BMP-4, -6, or -9 antibodies had no effect. BMP-2–immunodepleted multiple myeloma sera had decreased promoter stimulatory capacity, and BMP-2 concentrations in multiple myeloma sera were significantly higher than in normal sera. Our results demonstrate that BMP-2 is a major mediator of the hepcidin stimulatory activity of multiple myeloma sera.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Counteracting anemia
First, I am not a doctor, but I believe there are several kinds or ways to measure hemoglobin in blood. One is the amount of hemoglobin in a unit volume of blood. I believe this is what I commonly see when I get my blood work done. Another is measuring the average hemoglobin concentration in individual red blood cells.
So you can have a high concentration of hemoglobin in individual red blood cells, but if the number of red blood cells is low, then there is a low concentration of hemoglobin in a unit volume of blood and you can have symptoms of anemia.
My thinking is that you can eat well and provide all the nutrition needed for the body to make hemoglobin, but if the red blood cells are getting crowded out by myeloma, there is only so much that can be done to improve hemoglobin levels to counter anemia with nutrition.
Maybe good nutrition will also help the remaining bone marrow that can make red blood cells increase production to compensate for the loss of other cells. I believe that good nutrition is important and helps a great deal, but will only go so far. More supplements past a certain level will not result in improved results.
In the last three years I have had varying levels of anemia from myeloma and Revlimid. I have read that when red blood cell levels start getting low and anemia sets in, the body starts to try and compensate by making larger than normal blood cells and other things. As all of us who get regular CBC done, we see there are a number of CBC test parameters that measure things like hemoglobin, blood cell volume, distribution of blood cell volume, etc., and I see these effects in my results.
I do not remember all the details. It was some time ago I looked into this. But there is a good deal of information on the internet on CBC results and what they mean and why they may go out of range when anemia sets in. Any hematologist would be able to explain this much better that I can. To the trained eye, those CBC results can really tell a story about what is going on.
So you can have a high concentration of hemoglobin in individual red blood cells, but if the number of red blood cells is low, then there is a low concentration of hemoglobin in a unit volume of blood and you can have symptoms of anemia.
My thinking is that you can eat well and provide all the nutrition needed for the body to make hemoglobin, but if the red blood cells are getting crowded out by myeloma, there is only so much that can be done to improve hemoglobin levels to counter anemia with nutrition.
Maybe good nutrition will also help the remaining bone marrow that can make red blood cells increase production to compensate for the loss of other cells. I believe that good nutrition is important and helps a great deal, but will only go so far. More supplements past a certain level will not result in improved results.
In the last three years I have had varying levels of anemia from myeloma and Revlimid. I have read that when red blood cell levels start getting low and anemia sets in, the body starts to try and compensate by making larger than normal blood cells and other things. As all of us who get regular CBC done, we see there are a number of CBC test parameters that measure things like hemoglobin, blood cell volume, distribution of blood cell volume, etc., and I see these effects in my results.
I do not remember all the details. It was some time ago I looked into this. But there is a good deal of information on the internet on CBC results and what they mean and why they may go out of range when anemia sets in. Any hematologist would be able to explain this much better that I can. To the trained eye, those CBC results can really tell a story about what is going on.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Counteracting anemia
Thanks Eric. This is a good perspective.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Counteracting anemia
I think you have to eliminate any kidney involvement also. At the time of my diagnosis, I was in the 6 range, but in my case I started with a low level to begin with from kidney involvement and crowding from CLL.
I'm not sure how much "crowding" is a factor. I hovered around 20K WBC for several years and managed to keep my red blood cell count and hemoglobin above the threshold of anemia.
I don't know if there is a correlation or if it was coincidence, but at the time my CBC sent me to the hospital and I was diagnosed with multiple myeloma, my WBC was 54K.
I'm not sure how much "crowding" is a factor. I hovered around 20K WBC for several years and managed to keep my red blood cell count and hemoglobin above the threshold of anemia.
I don't know if there is a correlation or if it was coincidence, but at the time my CBC sent me to the hospital and I was diagnosed with multiple myeloma, my WBC was 54K.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Counteracting anemia
Thanks Wayne. Remember, I'm only smoldering. All my kidney markers (BUN, Creatinine, GFR) are great. I also had a kidney biopsy about a year ago, which showed an extremely healthy kidney. Also, remember that my RBC and hemoglobin numbers really aren't that bad yet. The way I understand it is that to qualify as being anemic by multiple myeloma CRAB standards, you have to meet the following:
Anemia: Hb 2 g/dL below the lower limit of normal or Hb <10 g/dL.
My Hb is currently at 12.4 with a normal lab range of 13.4 - 18 g/dL. But if the slope based on my last 5 test results continues, it won't be long till I get to 11.4 g/dL. Hence my hope that the Hb trend is only iron-deficiency related.
Anemia: Hb 2 g/dL below the lower limit of normal or Hb <10 g/dL.
My Hb is currently at 12.4 with a normal lab range of 13.4 - 18 g/dL. But if the slope based on my last 5 test results continues, it won't be long till I get to 11.4 g/dL. Hence my hope that the Hb trend is only iron-deficiency related.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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