Pending approval of my insurance company, I'm due to begin Pomalyst and dex next week after 9 rounds of heavy induction chemo with CyBorD (cyclophosphamide, Velcade, and dex), then Revlimid, Velcade, and dex (RVD), and next a failed stem cell transplant (SCT) (6 months post, numbers are back where they started).
Has anyone been on Pomalyst and has anyone had good results that keep ongoing?
I'd like to hear about experiences with the drug, especially good ones, as I'm getting discouraged from the relapse and progression. (Besides myeloma, I have amyloidosis and a very complex karyotype and deletion 13)
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Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
Re: Anyone getting good results with Pomalyst?
My father has AL amyloidosis, a close cousin of myeloma. He did an auto stem cell transplant, followed by Velcade and dex. These things only put him in a very good partial response. Then he did 8 months of Pomalyst (pomalidomide), which gave him a complete response! It seemed the side effects weren't horrible. He has stayed in complete response for over a year now.
In addition, I am now in my second cycle of Pomalyst, along with cyclophosphamide and dex, for myeloma. I'll let you know how it goes!
In addition, I am now in my second cycle of Pomalyst, along with cyclophosphamide and dex, for myeloma. I'll let you know how it goes!
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Anyone getting good results with Pomalyst?
My mother is on Pomalyst (no dex) for maintenance following her second auto SCT in March. Seems to be tolerating it well. I don't know if you have read this blog, "Myeloma Hope," but "Minnesota" Don Wright had good luck with Pomalyst for many, many years; just google "Don Wright myeloma".
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BeatMyeloma - Name: BeatMyeloma
- Who do you know with myeloma?: My mother
- When were you/they diagnosed?: Jan. 2008
- Age at diagnosis: 54
Re: Anyone getting good results with Pomalyst?
I have been on Pomalyst for more than a year. I started on a 4 milligram dose, but that was too strong and we switched to a 2 milligram dose on the usual 21 day schedule. I also take Decadron, 40 mg, every Wednesday. As far as my tests are concerned, Pomalyst has kept my M-protein at either 0.3 or 0.4 g/dL (3 or 4 g/L). My oncologist wants me to stay on the regimen until we can improve even further.
One problem associated with my Pomalyst/Decadron schedule is that the Decadron wipes me out. (At least I think it's the Decadron, and not the Pomalyst.) I take Decadron every Wednesday morning. I sometimes take a "short nap" right after taking the Decadron; I often stay asleep until late Thursday. Then I am up for 24-36 hours or longer. I either have no energy whatsoever, or I feel like I could paint the ceiling of the Sistine Chapel with one hand tied behind my back. I get a lot of things done around the house, and then I crash.
The sum total is that this chemotherapy regimen pretty much steals 3 days of every week, and sometimes 4. My best days are Tuesday, which is the farthest from my last Decadron dose, Monday and Saturday and Sunday. I'm going to be meeting with my oncologist next week and will discuss whether lowering the Decadron dose will make life more tolerable.
Another side effect I have, which may be due to the Pomalyst, Decadron and a couple of other things I take, is diarrhea; listed as a side effect of both drugs. I use OTC drugs to control it. Sometimes it is a big problem, especially when I am out of the house, and sometimes it is no problem at all.
Finally, I have experienced numerous days when I wake up in the morning and feel dizzy for a couple of hours. Almost all of the drugs I take say that dizziness is one of the primary side effects, so it has been difficult to pinpoint the problem. However, and this is not a scientific statement, I find that my eyes are dry in the morning. If I apply a single drop of Restasis, my dizziness seems to dissipate a lot faster. No one I've talked to knows why this should be so.
I hope this helps. I have positive feelings about Pomalyst. I plan to ask my oncologist to contact other medical centers that treat myeloma patients with this drug to find out what their experiences have been. It is difficult to get this information on my own.
One problem associated with my Pomalyst/Decadron schedule is that the Decadron wipes me out. (At least I think it's the Decadron, and not the Pomalyst.) I take Decadron every Wednesday morning. I sometimes take a "short nap" right after taking the Decadron; I often stay asleep until late Thursday. Then I am up for 24-36 hours or longer. I either have no energy whatsoever, or I feel like I could paint the ceiling of the Sistine Chapel with one hand tied behind my back. I get a lot of things done around the house, and then I crash.
The sum total is that this chemotherapy regimen pretty much steals 3 days of every week, and sometimes 4. My best days are Tuesday, which is the farthest from my last Decadron dose, Monday and Saturday and Sunday. I'm going to be meeting with my oncologist next week and will discuss whether lowering the Decadron dose will make life more tolerable.
Another side effect I have, which may be due to the Pomalyst, Decadron and a couple of other things I take, is diarrhea; listed as a side effect of both drugs. I use OTC drugs to control it. Sometimes it is a big problem, especially when I am out of the house, and sometimes it is no problem at all.
Finally, I have experienced numerous days when I wake up in the morning and feel dizzy for a couple of hours. Almost all of the drugs I take say that dizziness is one of the primary side effects, so it has been difficult to pinpoint the problem. However, and this is not a scientific statement, I find that my eyes are dry in the morning. If I apply a single drop of Restasis, my dizziness seems to dissipate a lot faster. No one I've talked to knows why this should be so.
I hope this helps. I have positive feelings about Pomalyst. I plan to ask my oncologist to contact other medical centers that treat myeloma patients with this drug to find out what their experiences have been. It is difficult to get this information on my own.
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davidincalif - Name: David
- When were you/they diagnosed?: Feb 2007
- Age at diagnosis: 67
Re: Anyone getting good results with Pomalyst?
Hi Cloverdavid,
It's great to hear that Pomalyst has been working well for you. I hope you continue to respond to the drug.
I just mentioned this in another posting, but I thought you might find it helpful as well. This forum posting, "Useful links to existing forum discussions," is always the first one in the list of discussions in the "Treatments & Side Effects" section of the forum. There are many different links in the posting that will take you to all previous discussions here in the forum about specific myeloma treatments and specific side effects.
I mention it because there's a link there for Pomalyst, which will list out for you some 40-odd previous forum discussions related to Pomalyst.
I've read many of those discussions, particularly the more recent ones, and my sense is that low blood cell counts and fatigue are probably the two most common side effects of the drug. But it's been a while since I read through the discussions, so don't rely too strongly on my impressions!
You also can find side effect information for Pomalyst in the drug's official prescribing information:
http://www.accessdata.fda.gov/drugsatfda_docs/label/2015/204026s005s006s008lbl.pdf
Melpen -
I don't know if you've started the Pomalyst and dex yet, but, if you have, I hope the treatment is going smoothly, and that you are responding to the treatment. Good luck!
It's great to hear that Pomalyst has been working well for you. I hope you continue to respond to the drug.
I just mentioned this in another posting, but I thought you might find it helpful as well. This forum posting, "Useful links to existing forum discussions," is always the first one in the list of discussions in the "Treatments & Side Effects" section of the forum. There are many different links in the posting that will take you to all previous discussions here in the forum about specific myeloma treatments and specific side effects.
I mention it because there's a link there for Pomalyst, which will list out for you some 40-odd previous forum discussions related to Pomalyst.
I've read many of those discussions, particularly the more recent ones, and my sense is that low blood cell counts and fatigue are probably the two most common side effects of the drug. But it's been a while since I read through the discussions, so don't rely too strongly on my impressions!
You also can find side effect information for Pomalyst in the drug's official prescribing information:
http://www.accessdata.fda.gov/drugsatfda_docs/label/2015/204026s005s006s008lbl.pdf
Melpen -
I don't know if you've started the Pomalyst and dex yet, but, if you have, I hope the treatment is going smoothly, and that you are responding to the treatment. Good luck!
Re: Anyone getting good results with Pomalyst?
I have been on many therapies since I was diagnosed in April 2012 and was stem cell transplant ineligible. My doc at UCSF put me on a regimen called ClaP-D, standing for clarithromycin, Pomalyst, and dex, in June, 2014.
Long story short, it really works, as I went into remission on May 15 of this year. He said Pomalyst really only works on its own in about 15% of patients, and this combo therapy was getting good results in 2 of his patients. The clarithromycin (Biaxin) acts as potentiator and ramps up the effectiveness of the Pomalyst. Initially I was on higher doses and, hallelujah, they have been lowered.
My local (East Bay) oncologist has now been adding clarithromycin to some of her patients on Pomalyst and it's hammering it. This is the only thing that has worked like a charm. I do have side effects, but for the most part power thru them the best I can. I swim and do water aerobics because they work well if I'm dizzy and help with the fatigue. I take Ritalin on an as needed basis and that helps a lot too.
You can show this myeloma who's boss. Good luck.
Long story short, it really works, as I went into remission on May 15 of this year. He said Pomalyst really only works on its own in about 15% of patients, and this combo therapy was getting good results in 2 of his patients. The clarithromycin (Biaxin) acts as potentiator and ramps up the effectiveness of the Pomalyst. Initially I was on higher doses and, hallelujah, they have been lowered.
My local (East Bay) oncologist has now been adding clarithromycin to some of her patients on Pomalyst and it's hammering it. This is the only thing that has worked like a charm. I do have side effects, but for the most part power thru them the best I can. I swim and do water aerobics because they work well if I'm dizzy and help with the fatigue. I take Ritalin on an as needed basis and that helps a lot too.
You can show this myeloma who's boss. Good luck.
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Mermaid100 - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 58
Re: Anyone getting good results with Pomalyst?
Greetings.
I just finished my 6th month of Pomalyst. I have done Revlimid and Velcade at least twice each. I did not do well on Kyprolis. But, Pomalyst has been a wonderfully surprising success. It has knocked my markers down by about half. Even after 5 months, it knocked it down another 10%. This was VERY surprising because we had thought that the effect had plateaued. Not.
So, I am very pleased with Pomalyst. I've also had very minimal side effects – fatigue, anemia toward the end of the cycle, neuropathy in my feet and ankles, swollen ankles. Along with the dex, I have gained weight while on Pomalyst. My wife absolutely loves it for me because it has the least amount of side effects of all the chemo drugs that I've done.
Will be trying Darzalex next.
I just finished my 6th month of Pomalyst. I have done Revlimid and Velcade at least twice each. I did not do well on Kyprolis. But, Pomalyst has been a wonderfully surprising success. It has knocked my markers down by about half. Even after 5 months, it knocked it down another 10%. This was VERY surprising because we had thought that the effect had plateaued. Not.
So, I am very pleased with Pomalyst. I've also had very minimal side effects – fatigue, anemia toward the end of the cycle, neuropathy in my feet and ankles, swollen ankles. Along with the dex, I have gained weight while on Pomalyst. My wife absolutely loves it for me because it has the least amount of side effects of all the chemo drugs that I've done.
Will be trying Darzalex next.
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Byros
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