Hi,
I made a post earlier that my father's treatment (Velcade, Melphalan and Prednisolone) for Refractory multiple myeloma ( diagnosed in 2009) because of severely low platelets. Now his count is 24,000. Anyways, his haemoglobin also started dropping and now it is 6.6. He received 2 units of blood today to increase his count.
Now is haemato-oncologist wants to start him on erythropoetin. But I am ambivalent about it since I have some disturbing stuff about the drug. My question is has anyone here has had good result with the drug? Especially in absense of chemo because my father's chaemo now consists for 40mg of Dexamethasone every Sunday. Please help.
Forums
Re: Erythropoetin (epo) - yes or no?
Epo seems like a logical recommendation in this case. It's primarily used to increased red blood cell counts, and there's also research showing it can increase platelet counts. See, for example, this study of epo and its impact on platelet counts in patients with liver disease:
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2036.2004.02088.x/pdf
Blood transfusions are another alternative to help with low hemoglobin levels. I'm not sure, however, if there are issues with such transfusions in cases such as your father's.
What have you read that makes you hesitant to have your father put on epo?
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2036.2004.02088.x/pdf
Blood transfusions are another alternative to help with low hemoglobin levels. I'm not sure, however, if there are issues with such transfusions in cases such as your father's.
What have you read that makes you hesitant to have your father put on epo?
Re: Erythropoetin (epo) - yes or no?
There is a great acticle on whether these drugs are really good for you or not linked in a post here
https://myelomabeacon.org/forum/anemia-is-it-big-business-t1194.html?hilit=anemia
And of course, there is FDA warnings on Epogen, Procrit and Aranesp. Quite scary.
https://myelomabeacon.org/forum/anemia-is-it-big-business-t1194.html?hilit=anemia
And of course, there is FDA warnings on Epogen, Procrit and Aranesp. Quite scary.
Re: Erythropoetin (epo) - yes or no?
Fair point. And I missed the fact that you said in your original posting that your father already had received at least one transfusion to raise his hemoglobin levels.
Thus, transfusion also is apparently an option for your father.
I don't think, however, that you should be worrying right now whether or not epo is a big business for big pharma.
You need to be focused on what is best for your father.
So just ask your father's doctor why he feels that epo is a better option than transfusions. He may be assuming, for example, that your father would prefer epo to transfusions, but if your father is fine with transfusions, his doctor may be happy to agree to them.
On the other hand, your father's doctor may have a valid medical reason for wanting to give your father epo instead of transfusions.
I don't think that, at this point, you need to worry about any major side effects of epo treatment, because I don't think your doctor is planning on treating your father with epo for a very long time. And long-term epo treatment is, I believe, what led to the concerns raised by the FDA, as described in this press release:
http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm260670.htm
The warning the FDA issued was for epo use in patients with chronic kidney disease. These patients need regular epo or transfusions to keep their hemoglobin levels high enough.
I think that's a different situation than your father is facing, where his hemoglobin levels are depressed because of the myeloma treatment he recently received.
Thus, transfusion also is apparently an option for your father.
I don't think, however, that you should be worrying right now whether or not epo is a big business for big pharma.
You need to be focused on what is best for your father.
So just ask your father's doctor why he feels that epo is a better option than transfusions. He may be assuming, for example, that your father would prefer epo to transfusions, but if your father is fine with transfusions, his doctor may be happy to agree to them.
On the other hand, your father's doctor may have a valid medical reason for wanting to give your father epo instead of transfusions.
I don't think that, at this point, you need to worry about any major side effects of epo treatment, because I don't think your doctor is planning on treating your father with epo for a very long time. And long-term epo treatment is, I believe, what led to the concerns raised by the FDA, as described in this press release:
http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm260670.htm
The warning the FDA issued was for epo use in patients with chronic kidney disease. These patients need regular epo or transfusions to keep their hemoglobin levels high enough.
I think that's a different situation than your father is facing, where his hemoglobin levels are depressed because of the myeloma treatment he recently received.
Re: Erythropoetin (epo) - yes or no?
I read somewhere that Erythropoetin should only be given to Cancer patients who are receiving chemo. Now it is not clear if it covers patients who have received Chemo but are not on Chemo.
Anyways, dad decided to take one dose of Epogen 40000. Doctor thinks that's a good idea even though after, transfusion, hemoglobin has risen to 9. Doctor has not given good reason for not continuing with transfusions. That's what is causing problem for me. Why does he need to receive such high dosage of Epogen when FDA clearly states that it should only be given to raise the hemoglobin high just enough not to need transfusion.
I seriously don't know what to do now. Doctor is saying he is running out of options because platelet is too low even now that he can't start Velcade in the near future. Also, Dex is apparently not working.
I'm not even sure if they did proper tests to make sure exactly why his hemoglobin or platelet is low. Is it the disease itself or is it something else?
Anyways, dad decided to take one dose of Epogen 40000. Doctor thinks that's a good idea even though after, transfusion, hemoglobin has risen to 9. Doctor has not given good reason for not continuing with transfusions. That's what is causing problem for me. Why does he need to receive such high dosage of Epogen when FDA clearly states that it should only be given to raise the hemoglobin high just enough not to need transfusion.
I seriously don't know what to do now. Doctor is saying he is running out of options because platelet is too low even now that he can't start Velcade in the near future. Also, Dex is apparently not working.
I'm not even sure if they did proper tests to make sure exactly why his hemoglobin or platelet is low. Is it the disease itself or is it something else?
Re: Erythropoetin - yes or no?
Many myeloma treatments can have the side effect of reducing blood cell counts. If you look at the prescribing information for Velcade,
http://www.accessdata.fda.gov/drugsatfda_docs/label/2012/021602s031s032lbl.pdf
and page down to the "Adverse Reactions" section, you'll see that anemia and thrombocytopenia (low platelets) are side effects that often happen in patients treated with Velcade.
So your father's system is probably still recovering from the impact Velcade had on these cell counts.
Also, just because the transfusion has gotten your father's hemoglobin back up to acceptable levels doesn't mean the counts will stay that way. More than likely, the counts will start dropping again and your father will either need a new transfusion, or epo.
By the way, has your father been treated with either Revlimid or thalidomide at some point? If not, I would think that they would be options for him to consider.
Also Pomalyst or Kyprolis, if you're in the U.S.
http://www.accessdata.fda.gov/drugsatfda_docs/label/2012/021602s031s032lbl.pdf
and page down to the "Adverse Reactions" section, you'll see that anemia and thrombocytopenia (low platelets) are side effects that often happen in patients treated with Velcade.
So your father's system is probably still recovering from the impact Velcade had on these cell counts.
Also, just because the transfusion has gotten your father's hemoglobin back up to acceptable levels doesn't mean the counts will stay that way. More than likely, the counts will start dropping again and your father will either need a new transfusion, or epo.
By the way, has your father been treated with either Revlimid or thalidomide at some point? If not, I would think that they would be options for him to consider.
Also Pomalyst or Kyprolis, if you're in the U.S.
Re: Erythropoetin (epo) - yes or no?
Hi,
I wish I could help! My mom is in a similar but still different position: diagnosed in 2012, asct in October 2012, relapse May this year. She had anemia (a little over 7 I think) and severely low platelets (below 10) at relapse. They started her with Revlimid and Dex right away, she's on her second cycle at the moment.
What could be interesting for you: you're not supposed to start Revlimid when platelets are below 70, because it is known to lower them further. I imagine it's the same with Velcade? Now obviously, that was ignored with my mom, I guess because there were no other options? Her platelet levels went up and down during the first cycle, but never above 25, then rose to 55 in the break. Then they went down again with the second cycle... She sometimes has problems with bruising (scary!) and receives platelet infusions from time to time.
She also receives "red" transfusions regularly, the oncologist hasn't brought up the option of Erythropoetin yet. The transfusions haven't yet been able to keep her hemoglobin level stable for longer than a few days, could Erythropoetin do that?
Terry, thank you for the link about epo and platelet count, I will get my mom to ask her oncologist if epo is an option for her.
I wish I could help! My mom is in a similar but still different position: diagnosed in 2012, asct in October 2012, relapse May this year. She had anemia (a little over 7 I think) and severely low platelets (below 10) at relapse. They started her with Revlimid and Dex right away, she's on her second cycle at the moment.
What could be interesting for you: you're not supposed to start Revlimid when platelets are below 70, because it is known to lower them further. I imagine it's the same with Velcade? Now obviously, that was ignored with my mom, I guess because there were no other options? Her platelet levels went up and down during the first cycle, but never above 25, then rose to 55 in the break. Then they went down again with the second cycle... She sometimes has problems with bruising (scary!) and receives platelet infusions from time to time.
She also receives "red" transfusions regularly, the oncologist hasn't brought up the option of Erythropoetin yet. The transfusions haven't yet been able to keep her hemoglobin level stable for longer than a few days, could Erythropoetin do that?
Terry, thank you for the link about epo and platelet count, I will get my mom to ask her oncologist if epo is an option for her.
-
anna78
Re: Erythropoetin (epo) - yes or no?
Hi p-roy,
<Now is haemato-oncologist wants to start him on erythropoetin. But I am ambivalent about it since I have some disturbing stuff about the drug. My question is has anyone here has had good result with the drug? >
I have not had any results with this drug but I have researched it and others as I just recently had a blood transfusion due to low hemoglobin.
You might be interested in going to this link http://www.washingtonpost.com/business/economy/anemia-drug-made-billions-but-at-what-cost/2012/07/19/gJQAX5yqwW_story.html
I have decided AGAINST taking any one of the three in case the onco would suggest it.
Kate
<Now is haemato-oncologist wants to start him on erythropoetin. But I am ambivalent about it since I have some disturbing stuff about the drug. My question is has anyone here has had good result with the drug? >
I have not had any results with this drug but I have researched it and others as I just recently had a blood transfusion due to low hemoglobin.
You might be interested in going to this link http://www.washingtonpost.com/business/economy/anemia-drug-made-billions-but-at-what-cost/2012/07/19/gJQAX5yqwW_story.html
I have decided AGAINST taking any one of the three in case the onco would suggest it.
Kate
-
Kate - Name: Kate
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Dec. 2012
Re: Erythropoetin - yes or no?
[quote]By the way, has your father been treated with either Revlimid or thalidomide at some point? If not, I would think that they would be options for him to consider.
Also Pomalyst or Kyprolis, if you're in the U.S. [/quote]
Dad was on Velcade and had gotten good results on it. But with his platelet so low ( now hovering around 25,000), the Doctor has ruled it out for the time being. Kyprolis and Pomalyst all lower blood counts - so same problem as Velcade. Dad did a course of thalidomide but had severe peripheral neuropathy because of it.
Anna: Sorry to hear about your mom. But thank you so much for posting. It kind of helps to know that there are other people who are going through the same stuff as you. If your mom ever takes epo, please let me know. I'd be grateful to know how she does on it.
Kate: that's great that you have decided against epo. So what are you doing instead?
Doctor dropped another bomb tonight. He thinks dad is at the last stage. We are all pretty shaken up. I just can't understand how he can be so bad given the fact that even all his organs are doing fine. He is now at home, kidney working fine (creatinine is slightly elevated but not much) and his appetite is fine too. It's his blood that's not doing so well. He has about 24% plasma cells in his bone marrow which I am told is very high. Doc now wants to try something drastic - we'll talk in a few days. Let's see what happens.
Also Pomalyst or Kyprolis, if you're in the U.S. [/quote]
Dad was on Velcade and had gotten good results on it. But with his platelet so low ( now hovering around 25,000), the Doctor has ruled it out for the time being. Kyprolis and Pomalyst all lower blood counts - so same problem as Velcade. Dad did a course of thalidomide but had severe peripheral neuropathy because of it.
Anna: Sorry to hear about your mom. But thank you so much for posting. It kind of helps to know that there are other people who are going through the same stuff as you. If your mom ever takes epo, please let me know. I'd be grateful to know how she does on it.
Kate: that's great that you have decided against epo. So what are you doing instead?
Doctor dropped another bomb tonight. He thinks dad is at the last stage. We are all pretty shaken up. I just can't understand how he can be so bad given the fact that even all his organs are doing fine. He is now at home, kidney working fine (creatinine is slightly elevated but not much) and his appetite is fine too. It's his blood that's not doing so well. He has about 24% plasma cells in his bone marrow which I am told is very high. Doc now wants to try something drastic - we'll talk in a few days. Let's see what happens.
Re: Erythropoetin (epo) - yes or no?
Wanted to make an update about Dad's situation.
According to doctor, he is in his last stag of disease. Doc gave us two options 1) Just keep him on Dex 40mg per week and just don't so anything else. He lasts as long as he lasts.
2) Try high-dose chemo which will require platelet, RBC donations. He wants to try high-dose melphalan.
Now I am a little confused about that. Is Melphalan the only option? Isn't there any other drugs to try?
His latest blood report - Hb - 9.4
WBC - 3300
Platelets - 24,000
Can anyone weigh in on this? My family is completely stunned. We just don't know what to do.
According to doctor, he is in his last stag of disease. Doc gave us two options 1) Just keep him on Dex 40mg per week and just don't so anything else. He lasts as long as he lasts.
2) Try high-dose chemo which will require platelet, RBC donations. He wants to try high-dose melphalan.
Now I am a little confused about that. Is Melphalan the only option? Isn't there any other drugs to try?
His latest blood report - Hb - 9.4
WBC - 3300
Platelets - 24,000
Can anyone weigh in on this? My family is completely stunned. We just don't know what to do.
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