Has anyone ever needed to take epo [erythropoietin, Procrit, Aranesp, Eprex, NeoRecormon] to help boost red blood cell counts? Did you suffer any side effects? Did it boost blood counts? Did it effect your myeloma at all, better or worse?
Has anyone decided not to use epo (Procrit), after a doctor prescribed it? How did that choice work out for you?
What are the pros/cons to taking it? I've read about some side effects, including tumor growth.
Forums
5 posts
• Page 1 of 1
Re: Epo (Procrit) with multiple myeloma - experiences?
I had about 4 injections of Procrit one week apart a few months after I was diagnosed as smoldering. My Hgb was around 9.0 and I was having a hard time doing my normal things because of fatigue. My Hgb increased to the 11.0 range very quickly with the injections. I felt a lot better. I have no idea if it had any effect on the myeloma. I had no side effects from the injections. I know that the FDA has posted warnings about possible heart problems with these medications since I had the injections in 2008.
Nancy in Phila
Nancy in Phila
-
NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Epo (Procrit) with multiple myeloma - experiences?
I never had any EPO injections. A few times when I was really lacking in RBC and hemoglobin when I was in the hospital I was transfused with blood, but never given EPO.
For much of the last three years my hemoglobin and RBC counts have been mostly below the normal range either because of myeloma or the side effects of the drugs I have been taking for myeloma. I swim and bike a lot and I do feel the fatigue effects when my counts are on the low side. I asked my oncologist about using EPO to raise my counts up in the hope it would help give me the energy I had before. He pretty firmly said EPO in my case was unnecessary and that ended any more discussion.
I was a bit disappointed because I have heard from others who exercise and took EPO because of cancer complications they noticed a distinct boost in energy. I was disappointed I was not going to get to experience this boost and thought that my HMO just did not want to pay for it, but maybe if I had different health insurance I would be getting it.
Months later when I was searching for new myeloma news on the internet I came across an article about EPO which discussed it’s illegal use in sports. The article discussed EPO dosage and what was the safe amount. There were accusations that the makers of EPO were pushing doctors to administer EPO at doses far above what the EPO clinical trial studies showed were effective to boost profits. It also feature a women who’s husband had cancer and was taking EPO to treat his “low” RBC and hemoglobin. He died from EPO complications. It was very enlightening for me to read about her husband’s experience and treatment compared to mine with an HMO.
My HMO, who I pay my health insurance premiums to, provides all my infusions, Velcade, Aredia, at their hospital facilities with their nursing staff. My HMO is a none profit and they do not make any more money providing treatments or drugs that I do not need. In this women’s husband case he was getting his infusions at an independent infusion center that would bill his insurance for the treatment cost. If his CBC labs showed him being even slightly out of the normal range for RBC or hemoglobin counts for his age and sex demographic, and I mean just 0.1, they were giving him EPO.
I do not remember the numbers but I do recall my counts were and still are a lot lower than his were and I have been able to bike, swim and climb to the top of Half Dome. The article was making the accusation the infusion center would be making about $300 in profit through a complicated rebate process from the EPO manufacture for each injection of EPO, which is a pretty good profit for a single injection, and this man’s lab numbers being just slightly below the normal acceptable range is not justification for EPO use and arguably is a case of malpractice. I suppose somewhere a doctor has to fit in all of this to prescribe that EPO but I do not remember those details.
I did not realize that EPO could be dangerous and after reading that article I felt a lot better about the position my doctor took when I had asked him about EPO. My other big take away from this is that you really need to do your own research into treatments and what is going on and that it is possible your caregiver may not have your own best interest in the decisions they make.
I do believe that vast majority of the medical profession is doing what they believe is best for the patients they treat and there is often differences of opinion in treatment approaches that are not cost or profit based.
For much of the last three years my hemoglobin and RBC counts have been mostly below the normal range either because of myeloma or the side effects of the drugs I have been taking for myeloma. I swim and bike a lot and I do feel the fatigue effects when my counts are on the low side. I asked my oncologist about using EPO to raise my counts up in the hope it would help give me the energy I had before. He pretty firmly said EPO in my case was unnecessary and that ended any more discussion.
I was a bit disappointed because I have heard from others who exercise and took EPO because of cancer complications they noticed a distinct boost in energy. I was disappointed I was not going to get to experience this boost and thought that my HMO just did not want to pay for it, but maybe if I had different health insurance I would be getting it.
Months later when I was searching for new myeloma news on the internet I came across an article about EPO which discussed it’s illegal use in sports. The article discussed EPO dosage and what was the safe amount. There were accusations that the makers of EPO were pushing doctors to administer EPO at doses far above what the EPO clinical trial studies showed were effective to boost profits. It also feature a women who’s husband had cancer and was taking EPO to treat his “low” RBC and hemoglobin. He died from EPO complications. It was very enlightening for me to read about her husband’s experience and treatment compared to mine with an HMO.
My HMO, who I pay my health insurance premiums to, provides all my infusions, Velcade, Aredia, at their hospital facilities with their nursing staff. My HMO is a none profit and they do not make any more money providing treatments or drugs that I do not need. In this women’s husband case he was getting his infusions at an independent infusion center that would bill his insurance for the treatment cost. If his CBC labs showed him being even slightly out of the normal range for RBC or hemoglobin counts for his age and sex demographic, and I mean just 0.1, they were giving him EPO.
I do not remember the numbers but I do recall my counts were and still are a lot lower than his were and I have been able to bike, swim and climb to the top of Half Dome. The article was making the accusation the infusion center would be making about $300 in profit through a complicated rebate process from the EPO manufacture for each injection of EPO, which is a pretty good profit for a single injection, and this man’s lab numbers being just slightly below the normal acceptable range is not justification for EPO use and arguably is a case of malpractice. I suppose somewhere a doctor has to fit in all of this to prescribe that EPO but I do not remember those details.
I did not realize that EPO could be dangerous and after reading that article I felt a lot better about the position my doctor took when I had asked him about EPO. My other big take away from this is that you really need to do your own research into treatments and what is going on and that it is possible your caregiver may not have your own best interest in the decisions they make.
I do believe that vast majority of the medical profession is doing what they believe is best for the patients they treat and there is often differences of opinion in treatment approaches that are not cost or profit based.
-
Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Epo (Procrit) with multiple myeloma - experiences?
Just as an FYI, there are at least two other discussion threads here in the forum that are related to this topic. Here are links to them:
Erythropoietin (epo) - yes or no?
Weekly Poll - Blood Transfusions And Erythropoietin
Erythropoietin (epo) - yes or no?
Weekly Poll - Blood Transfusions And Erythropoietin
Re: Epo (Procrit) with multiple myeloma - experiences?
Thanks everyone for sharing your personal experiences as well as other links.
We were about to get Epo because of low RBC, although we did not exhibit the outwardly the symptoms of anemia. The nurse gave us the literature to read over before administering it. We read it over, and it freaked us out, for the reasons posted above. Hence, we decided against it. The next day, our RBC increased on its own.
We were about to get Epo because of low RBC, although we did not exhibit the outwardly the symptoms of anemia. The nurse gave us the literature to read over before administering it. We read it over, and it freaked us out, for the reasons posted above. Hence, we decided against it. The next day, our RBC increased on its own.
5 posts
• Page 1 of 1
Return to Treatments & Side Effects