Hi Multibilly,
Can't you request that your doctor order a ferritin test to see if you have adequate iron levels? This will indicate whether supplementation is really necessary. My iron stores were always perfectly normal even as my hemoglobin and RBC gradually dropped from 15.0 to about 9.0 over the course of nine months.
Good luck.
Forums
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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
Terry,
Don't know why I didn't think of that. I will now be seeing my GP tomorrow to discuss this. Thanks.
Don't know why I didn't think of that. I will now be seeing my GP tomorrow to discuss this. Thanks.
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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
At the start of my journey with myeloma there were indeed questions regarding if I was "active," anemia being my only indicator at the time. My Hgb started around 9.3g/dl. BMB at that time showed only 7 % PC cells on aspirate with erythroid dysphasia, an m-spike of 0.84 mg/dl and a slightly increased lambda light chain.
I too tried beet juice and vitamin B 12 - at first sublingual and then B 12 injections. Did have my levels both for iron and B12 done, they were both in range. Spent months trying to pinpoint the cause of the anemia and at that time started running low grade fevers. Was seen by many specialists from infectious disease to rheumatology. Even an MDS specialist to see if the dysplasia in the red cell line was causing the anemia.
Was treated with antibiotics, prednisone and even EPO injections. My levels continued to drop, ranging now from 6.5-7g/dl. I was eventually requiring blood transfusions every 10-14 days as I developed red blood cell aplasia. A repeat marrow showed showed PC's now at 30%.
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. I would definitely have your iron and B 12 levels drawn. I would also take a close look at the MCH, MCHC and MCV levels on your blood work. This can aid in identifying the cause of the anemia.
http://labtestsonline.org/understanding/anemia
My myeloma specialist suspected my 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 with. Have since had a ASCT and my levels have been holding strong:)
Best of Luck,
Jen
I too tried beet juice and vitamin B 12 - at first sublingual and then B 12 injections. Did have my levels both for iron and B12 done, they were both in range. Spent months trying to pinpoint the cause of the anemia and at that time started running low grade fevers. Was seen by many specialists from infectious disease to rheumatology. Even an MDS specialist to see if the dysplasia in the red cell line was causing the anemia.
Was treated with antibiotics, prednisone and even EPO injections. My levels continued to drop, ranging now from 6.5-7g/dl. I was eventually requiring blood transfusions every 10-14 days as I developed red blood cell aplasia. A repeat marrow showed showed PC's now at 30%.
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. I would definitely have your iron and B 12 levels drawn. I would also take a close look at the MCH, MCHC and MCV levels on your blood work. This can aid in identifying the cause of the anemia.
http://labtestsonline.org/understanding/anemia
My myeloma specialist suspected my 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 with. Have since had a ASCT and my levels have been holding strong:)
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: Counteracting anemia
I was anemic for over 40 years before I was diagnosed. I took iron for 8 years with no improvement. As I understand it, the concentration percentage when they test your ferritin level can give a clue if your anemia is due to iron deficiency.
My myeloma specialist says it is not because the cancer cells crowd out the red blood cells that causes anemia, but that the paraprotein being created by the cancer cells interferes with the ability to make red blood cells.
Hope that helps some.
My myeloma specialist says it is not because the cancer cells crowd out the red blood cells that causes anemia, but that the paraprotein being created by the cancer cells interferes with the ability to make red blood cells.
Hope that helps some.
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torimooney - Name: tori
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: apr 2012
- Age at diagnosis: 64
Re: Counteracting anemia
Thanks Tori. That's a valuable perspective from your specialist..
I just had my blood drawn today for measuring my ferritin, total iron binding capacity (TIBC), vitamin B12, folate levels and a new CBC.
It was a strange and kind of funny experience leaving her office today. She wished me well and said she hoped she would have some bad numbers from these particular lab results next week
I said "thanks, me too".
I appreciate everyone's comments.
I just had my blood drawn today for measuring my ferritin, total iron binding capacity (TIBC), vitamin B12, folate levels and a new CBC.
It was a strange and kind of funny experience leaving her office today. She wished me well and said she hoped she would have some bad numbers from these particular lab results next week
I said "thanks, me too".I appreciate everyone's comments.
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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
Yes, it is the TIBC if I remember correctly. That is most important. And there is some percentage related to the TIBC that is most meaningful (or perhaps the TIBC gives you that percentage).
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torimooney - Name: tori
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: apr 2012
- Age at diagnosis: 64
Re: Counteracting anemia
So, just to close this thread off, I got my latest results today. What a difference a couple of weeks can make it you eat a couple of burgers (organic) a week and take a multivitamin.
FERRITIN, SERUM 92 NG/ML 20-380
IRON, SERUM 63 MCG/DL 45-200
IRON BINDING CAPACITY 353 MCG/DL 250-450
% SATURATION [L] 18 % 20-50
RBC 4.80 MILL/MCL 4.20-5.80
HEMOGLOBIN 13.9 GM/DL 13.4-18
My RBC and Hemoglobin bounced back nicely into the normal range and none of my iron markers are of concern. My doc said not to worry about this saturation percentage at this level given my iron and ferritin levels (and that the saturation % can vary quite a bit).
So, don't assume things are necessarily multiple myeloma related if your RBC and hemoglobin starts to drop. Get some follow up tests. In my case, I think my shift to a largely vegetarian diet without taking a decent iron-bearing multivitamin and eating no red meat was to blame. I will know for certain where things stand when I get my next labs in a couple of months.
FERRITIN, SERUM 92 NG/ML 20-380
IRON, SERUM 63 MCG/DL 45-200
IRON BINDING CAPACITY 353 MCG/DL 250-450
% SATURATION [L] 18 % 20-50
RBC 4.80 MILL/MCL 4.20-5.80
HEMOGLOBIN 13.9 GM/DL 13.4-18
My RBC and Hemoglobin bounced back nicely into the normal range and none of my iron markers are of concern. My doc said not to worry about this saturation percentage at this level given my iron and ferritin levels (and that the saturation % can vary quite a bit).
So, don't assume things are necessarily multiple myeloma related if your RBC and hemoglobin starts to drop. Get some follow up tests. In my case, I think my shift to a largely vegetarian diet without taking a decent iron-bearing multivitamin and eating no red meat was to blame. I will know for certain where things stand when I get my next labs in a couple of months.
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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
As I've noted elsewhere in the forum, new blood work of March 31 showed an increase in my M-spike from 2.11 to 2.40 g/dL, a big drop in hemoglobin from 12.3 to 10.0 mg/dL and a jump in serum free light chain ratio from 64.8 to 93.7. The
values for the latter two markers are close to thresholds for myeloma-defining (MDE) events.
While those two new data points are worrisome for someone who has been in MGUS for over eight years, I am heartened by my bone marrow biopsy on April 21 which reported the plasma cell concentration at 5-10%. In the absence of definitive MDE's, that finding implies continued MGUS status.
Here is where I would much appreciate feedback regarding my low hemoglobin value in light of the following data of March 31 relating to my serum iron:
Ferritin 81 ng/mL 22-322
Iron 62 ng/mL 45-160
RBC 3.5 10^6/uL 3.7-6.1
Hemoglobin 10.0 g/dL 12-16.5
Note that my ferritin and iron values are within normal range, unlike RBC and hemoglobin. This contrasts with the data that Multibilly posted above, all of which are in the normal range.
As someone following a modified Mediterrenan Diet, with scarcely any red meat but a lot of salmon, shrimp and chicken breast, I'm wondering if I should include some red meat at least once a week,. Meanwhile, I am taking curcumin 400 mg/d, optimized resveratrol, green tea extract, and grapeseed extract. From what I have been reading of recent studies of curcumin use by MGUS and smoldering patients suggests that I need to go much higher doses.
values for the latter two markers are close to thresholds for myeloma-defining (MDE) events.
While those two new data points are worrisome for someone who has been in MGUS for over eight years, I am heartened by my bone marrow biopsy on April 21 which reported the plasma cell concentration at 5-10%. In the absence of definitive MDE's, that finding implies continued MGUS status.
Here is where I would much appreciate feedback regarding my low hemoglobin value in light of the following data of March 31 relating to my serum iron:
Ferritin 81 ng/mL 22-322
Iron 62 ng/mL 45-160
RBC 3.5 10^6/uL 3.7-6.1
Hemoglobin 10.0 g/dL 12-16.5
Note that my ferritin and iron values are within normal range, unlike RBC and hemoglobin. This contrasts with the data that Multibilly posted above, all of which are in the normal range.
As someone following a modified Mediterrenan Diet, with scarcely any red meat but a lot of salmon, shrimp and chicken breast, I'm wondering if I should include some red meat at least once a week,. Meanwhile, I am taking curcumin 400 mg/d, optimized resveratrol, green tea extract, and grapeseed extract. From what I have been reading of recent studies of curcumin use by MGUS and smoldering patients suggests that I need to go much higher doses.
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Mort - Name: Morton Golub
- When were you/they diagnosed?: MGUS - July 2008
- Age at diagnosis: 83
Re: Counteracting anemia
Mort,
You might also consider taking an iron supplement. As I mentioned above, in addition to enjoying some red meat about once a week, I take a 65 mg iron (equivalent to 325mg ferrous sulfate) daily. Since I first posted that thread, my hemoglobin and RBC numbers have been doing quite well and are currently at 13.5 g/dL (normal: 12.6 - 17.7L) and 4.6 x 10>6/uL (normal: 4.14 -5.8), respectively.
I also think you are right in that you should consider a much higher dose curcumin regimen, if you are going to adopt a curcumin-based approach to managing your MGUS. Note that an earlier resveratrol clincal trial for myeloma was suspended due to safety concerns.
https://myelomabeacon.org/news/2010/05/03/resveratrol-trial-in-multiple-myeloma-suspended-due-to-safety-concerns/
As always, you should also clear the use of any supplements with your oncologist.
You might also consider taking an iron supplement. As I mentioned above, in addition to enjoying some red meat about once a week, I take a 65 mg iron (equivalent to 325mg ferrous sulfate) daily. Since I first posted that thread, my hemoglobin and RBC numbers have been doing quite well and are currently at 13.5 g/dL (normal: 12.6 - 17.7L) and 4.6 x 10>6/uL (normal: 4.14 -5.8), respectively.
I also think you are right in that you should consider a much higher dose curcumin regimen, if you are going to adopt a curcumin-based approach to managing your MGUS. Note that an earlier resveratrol clincal trial for myeloma was suspended due to safety concerns.
https://myelomabeacon.org/news/2010/05/03/resveratrol-trial-in-multiple-myeloma-suspended-due-to-safety-concerns/
As always, you should also clear the use of any supplements with your oncologist.
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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
Thanks, Multibilly, for your very helpful comments, as always. I am encouraged by your success in raising the hemoglobin values by returning to eating some red meat about once a week and taking an iron supplement.
Yes, I will look into taking an iron supplement, as you suggested, in the hope of raising my hemoglobin into the normal range and thus removing a potential MDE from my CRAB criteria. I have also begun eating red meat (brisket burger) once a week, toward the same end. Yet, as I remarked in my post above, my iron and ferritin values imply an adequate level of iron in my blood, which would seem to make iron supplementation unnecessary. And yes, I have cleared the use of the supplements mentioned in my post above with my oncologist.
I have noted your alert concerning the suspension in 2010 of a clinical trial for SRT-501, a proprietary formulation of resveratrol, due to safety concerns. I consider that case has no real bearing on my current use of the supplement (Life Extension Optimized Resveratrol) which has had many years of safe use by MGUS and smoldering multiple myeloma patients.
Yes, I will look into taking an iron supplement, as you suggested, in the hope of raising my hemoglobin into the normal range and thus removing a potential MDE from my CRAB criteria. I have also begun eating red meat (brisket burger) once a week, toward the same end. Yet, as I remarked in my post above, my iron and ferritin values imply an adequate level of iron in my blood, which would seem to make iron supplementation unnecessary. And yes, I have cleared the use of the supplements mentioned in my post above with my oncologist.
I have noted your alert concerning the suspension in 2010 of a clinical trial for SRT-501, a proprietary formulation of resveratrol, due to safety concerns. I consider that case has no real bearing on my current use of the supplement (Life Extension Optimized Resveratrol) which has had many years of safe use by MGUS and smoldering multiple myeloma patients.
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Mort - Name: Morton Golub
- When were you/they diagnosed?: MGUS - July 2008
- Age at diagnosis: 83
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