This week's poll is about treatment of anemia with transfusions or erythropoietin (EPO).
Anemia (low red blood cell count) often causes chronic tiredness, chest pain, headaches, problems concentrating, shortness of breath, fast or irregular heartbeat, pale skin, chilled sensations, cold hands and feet, and dizziness. Patients may feel the effects of anemia intensify when standing or after exercise.
Red blood cell transfusions, which are done in a hospital or clinic, can be used to raise a person's red blood cell count. During a transfusion, the patient receives donated red blood cells through a tube connected to a needle inserted in the patient’s vein. A transfusion takes two to three hours per unit of blood, according to the National Marrow Donor Program. Transfusions typically provide relief from anemia symptoms within 24 hours, but the effects are short-lived, sometimes lasting less than a week.
Erythropoietin is a hormone secreted by the kidneys that stimulates the bone marrow to produce red blood cells. Erythropoiesis-stimulating agents (ESAs), which are man-made versions of erythropoietin that are available as prescription medications, can be given to anemic myeloma patients to increase red blood cell production. These include Epogen (epoetin alfa), Procrit (epoetin alfa), NeoRecormon (epoetin beta) (in Europe), and Aranesp (darbepoietin alfa).
A few clarifications about this week's poll:
First of all, this poll is for people diagnosed with multiple myeloma (not smoldering myeloma or monoclonal gammopathy of undetermined significance).
Second, if you are a caregiver or family member of a myeloma patient, feel free to answer on their behalf.
As always, feel free to post comments, thoughts, or feedback about this week's poll in the space below. They can be very useful to other readers.
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6 posts
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Re: Weekly Poll - Blood Transfusions And Erythropoietin
Should you answer "yes" if you only had to receive transfusions directly after an SCT?
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rum&ting
Re: Weekly Poll - Blood Transfusions And Erythropoietin
Please answer yes even if you only received one or a few transfusions, and even if it was just during the stem cell transplant recovery phase. We'll run one or more follow-up polls at some point that inquire about when and for how long you received transfusions.
Feel free to comment with those types of details now, though. It'll be helpful to other readers and also help us formulate the follow-up polls.
Feel free to comment with those types of details now, though. It'll be helpful to other readers and also help us formulate the follow-up polls.
Re: Weekly Poll - Blood Transfusions And Erythropoietin
Why doesn't the The Beacon warn people of the problems with using Erythropoietin and other ESA's. A number of studies in several types of cancers have shown that patients taking erythropoietin did not live as long as other patients. - See more at: http://www.themmrf.org/living-with-multiple-myeloma/patients-starting-treatment/symptoms-and-side-effects/growth-factors-erythropoietin.html#sthash.bpva4mMk.dpuf. It can even cause tumors to increase and can cause death. Also Medicare/cad will not even cover it anymore because of its lethality. People should know about this. Thank You
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GeorgeLJurak - Name: George Jurak
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan. 2011
- Age at diagnosis: 59
Re: Weekly Poll - Blood Transfusions And Erythropoietin
Hi George,
I'm not sure why you are so upset about the use of ESAs. From what I understand from conversations I've had with different doctors, they are definitely useful in certain situations. You just have to be cautious to avoid over using them.
You only quoted part of what is said on the MMRF page. Here is the full statement, with the crucial last sentence:
"A number of studies in several types of cancers have shown that patients taking erythropoietin did not live as long as other patients. Most of these studies were not conducted in multiple myeloma. Further, erythropoietin was used in a way that is different from how it is typically used in practice today. In contrast, an analysis of studies where erythropoietin was used appropriately did not show any impact on survival."
Also, it's simply not true that Medicare won't cover the use of ESAs, and I don't know why you want to scare people into believing that's the case. The Medicare policy on coverage of ESAs in cancer patients is described here:
http://tinyurl.com/medicare-esa-coverage-cancer
As you will see, there is a long list of situations where Medicare will cover ESAs in cancer patients, including myeloma patients.
The policy also describes situations where Medicare won't cover ESAs in cancer patients, and perhaps one of those situations applied to you in the past.
But it's simply not true that Medicare won't cover the cost of ESA treatment in myeloma patients.
I'm not sure why you are so upset about the use of ESAs. From what I understand from conversations I've had with different doctors, they are definitely useful in certain situations. You just have to be cautious to avoid over using them.
You only quoted part of what is said on the MMRF page. Here is the full statement, with the crucial last sentence:
"A number of studies in several types of cancers have shown that patients taking erythropoietin did not live as long as other patients. Most of these studies were not conducted in multiple myeloma. Further, erythropoietin was used in a way that is different from how it is typically used in practice today. In contrast, an analysis of studies where erythropoietin was used appropriately did not show any impact on survival."
Also, it's simply not true that Medicare won't cover the use of ESAs, and I don't know why you want to scare people into believing that's the case. The Medicare policy on coverage of ESAs in cancer patients is described here:
http://tinyurl.com/medicare-esa-coverage-cancer
As you will see, there is a long list of situations where Medicare will cover ESAs in cancer patients, including myeloma patients.
The policy also describes situations where Medicare won't cover ESAs in cancer patients, and perhaps one of those situations applied to you in the past.
But it's simply not true that Medicare won't cover the cost of ESA treatment in myeloma patients.
Re: Weekly Poll - Blood Transfusions And Erythropoietin
Hi Cheryl, thank you for the info. I suggest you read the info in this link :http://www.livestrong.com/article/36060-side-effects-epoetin/ . I realize some people have no choice when it comes to ESA's, but I believe that people should be informed about these products. I was given a bunch of needles to inject myself with this stuff, which I did once, then I read about all the side effects and Medicare's position of them and I stopped immediately and luckily my counts came back on their own after my ASCT. When I discussed my concerns with my Onc and the Onc Nurses, they agreed that it would be much better not to use these products unless absolutely necessary. Again, I realize some people have no choice, my point was to have The Beacon let people know of possible risks. I did read that medicare/cad had stopped covering the ESA's: maybe it was wrong or has been changed.
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GeorgeLJurak - Name: George Jurak
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan. 2011
- Age at diagnosis: 59
6 posts
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