My father in law has had multiple myeloma for almost 6 years. For the last year he has been on Revlimid and Dexamethasone. He has done extremely well on this until recently. Over the last few months his red blood cell count has been dropping to the point where he now needs a blood transfusion every 2 weeks.
The pharmacy is now saying maybe he should be pulled off the Revlimid and try something else. I know there aren't many options...if any. He is also on Pamydronate (sp?). The Rev./Dex has been working so well on his multiple myeloma I hate to see him pulled off it. Is there any way to increase his red blood cell count? Any idea what causes this?
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Re: Blood transfusions every 2 weeks
Here are a number of resources on The Beacon about anemia (low red blood cell counts) that you may find helpful:
Myeloma experts recently issued guidelines for managing anemia in myeloma patients:
https://myelomabeacon.org/news/2011/05/23/experts-develop-guidelines-for-treating-anemia-in-multiple-myeloma-patients-imw-2011/
Dr. Aliawadhi spoke at an oncology meeting earlier this week about managing side effects of myeloma treatment, including anemia:
https://myelomabeacon.org/forum/asco-2011-multiple-myeloma-discussion-day-3-t451-10.html
Dr. Vesole and a myeloma patient discussed when transfusions are appropriate and other options for managing anemia:
https://myelomabeacon.org/forum/when-to-get-blood-transfusion-t425.html?
Hopefully a number of other members of the Beacon forum community can share their anemia experiences with you.
Best wishes to your father-in-law. We're glad to hear he has done very well on Revlimid and dexamethasone so far.
Myeloma experts recently issued guidelines for managing anemia in myeloma patients:
https://myelomabeacon.org/news/2011/05/23/experts-develop-guidelines-for-treating-anemia-in-multiple-myeloma-patients-imw-2011/
Dr. Aliawadhi spoke at an oncology meeting earlier this week about managing side effects of myeloma treatment, including anemia:
https://myelomabeacon.org/forum/asco-2011-multiple-myeloma-discussion-day-3-t451-10.html
Dr. Vesole and a myeloma patient discussed when transfusions are appropriate and other options for managing anemia:
https://myelomabeacon.org/forum/when-to-get-blood-transfusion-t425.html?
Hopefully a number of other members of the Beacon forum community can share their anemia experiences with you.
Best wishes to your father-in-law. We're glad to hear he has done very well on Revlimid and dexamethasone so far.
Re: Blood transfusions every 2 weeks
Thanks so much, that's very helpful. I'll check out those resources.
Anyone else have any experiences with this?
Anyone else have any experiences with this?
Re: Blood transfusions every 2 weeks
I am taking Revlimid as a maintenance therapy now. My treatment therapy was velcade-doxil-doxy. My cell counts (white/red/platelets) are all continuing to drop. I have not become so anemic that I needed a transfusion yet. My doctor discussed with me that if my counts do not stabilize that I switch to Velcade maintenance. Apparently, Velcade does not cause your counts to drop like Revlimid does. So, perhaps speaking with your oncologist about the Velcade treatment option may be beneficial. The drawback with Velcade is that it is an infusion treatment, so you have to go to a treatment facility for it. Good luck!
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Gina - Name: Gina
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: November, 2009
- Age at diagnosis: 42
Re: Blood transfusions every 2 weeks
Gina and eljay2010,
Although it's not the official, FDA-approved way to administer Velcade, more and more doctors are giving it as a subcutaneous injection rather than an infusion. I think I've even heard of patients self-administering the subcutaneous injections at home, but that may just be an urban legend (anyone else heard of that?).
The subcutaneous injection apparently is given somewhat less frequently, and injecting it that way, plus doing it less frequently, supposedly reduces the chance of getting some of the side effects many people get with Velcade, but the efficacy of the treatment is still basically the same.
Good luck!
Although it's not the official, FDA-approved way to administer Velcade, more and more doctors are giving it as a subcutaneous injection rather than an infusion. I think I've even heard of patients self-administering the subcutaneous injections at home, but that may just be an urban legend (anyone else heard of that?).
The subcutaneous injection apparently is given somewhat less frequently, and injecting it that way, plus doing it less frequently, supposedly reduces the chance of getting some of the side effects many people get with Velcade, but the efficacy of the treatment is still basically the same.
Good luck!
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TerryH
Re: Blood transfusions every 2 weeks
Gina wrote:
> I am taking Revlimid as a maintenance therapy now. My treatment therapy
> was velcade-doxil-doxy. My cell counts (white/red/platelets) are all
> continuing to drop. I have not become so anemic that I needed a
> transfusion yet. My doctor discussed with me that if my counts do not
> stabilize that I switch to Velcade maintenance. Apparently, Velcade does
> not cause your counts to drop like Revlimid does. So, perhaps speaking
> with your oncologist about the Velcade treatment option may be beneficial.
> The drawback with Velcade is that it is an infusion treatment, so you have
> to go to a treatment facility for it. Good luck!
Thanks Gina for your feedback, that's interesting. He was on Velcade prior to the Revlimid. Not sure if he was on anything else with it. His blood was stable on the Velcade but he got severe neuropathy on it along with bone pain. That was a year ago, maybe it was the dosage or the doctor. Seems to me the doctor should have acted on the neuropathy before it got severe. He has a new doctor now. It will be interesting to see what he comes up with.
What is the doxil-doxy? Is that an additional drug or part of the Velcade name?
All the best!
> I am taking Revlimid as a maintenance therapy now. My treatment therapy
> was velcade-doxil-doxy. My cell counts (white/red/platelets) are all
> continuing to drop. I have not become so anemic that I needed a
> transfusion yet. My doctor discussed with me that if my counts do not
> stabilize that I switch to Velcade maintenance. Apparently, Velcade does
> not cause your counts to drop like Revlimid does. So, perhaps speaking
> with your oncologist about the Velcade treatment option may be beneficial.
> The drawback with Velcade is that it is an infusion treatment, so you have
> to go to a treatment facility for it. Good luck!
Thanks Gina for your feedback, that's interesting. He was on Velcade prior to the Revlimid. Not sure if he was on anything else with it. His blood was stable on the Velcade but he got severe neuropathy on it along with bone pain. That was a year ago, maybe it was the dosage or the doctor. Seems to me the doctor should have acted on the neuropathy before it got severe. He has a new doctor now. It will be interesting to see what he comes up with.
What is the doxil-doxy? Is that an additional drug or part of the Velcade name?
All the best!
Re: Blood transfusions every 2 weeks
I was taking 2 infusion drugs (Velcade and doxil) and 1 pill (doxyrubicin (?)). Doxy is the one that keeps you up at night.
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Gina - Name: Gina
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: November, 2009
- Age at diagnosis: 42
Re: Blood transfusions every 2 weeks
Sorry, responded with the wrong drug. It's not doxy. It's dexamethasone.
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Gina - Name: Gina
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: November, 2009
- Age at diagnosis: 42
Re: Blood transfusions every 2 weeks
Yes, My father 80 is also treated same with bortezomib (Velcade) subcutaneously (in the skin), and he is doing good for the last one year, bringing down his M band from 3.8 to 0.99, however, his hemoglobin is not improving. So it gives nightmares to us. Good Luck
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Anonymous
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