Hi everyone. I would like to hear from anyone who is taking Pomalyst (pomalidomide, Imnovid) and dexamethasone.
My mom started taking Pomalyst 2 mg (28 day cycle, 21 on/7 off) and weekly dex 20 mg.
Her oncologist started her on 2 mg vs the usual 4 mg regimen due to her lifelong intense sensitivity to all meds (and her being quick to develop often strong and rare side effects) - but also supported by the Dr. Martha Lacy clinical trial at Mayo Clinic that showed 2 mg to be just as efficacious as the 4 mg regimen.
I would like to know how you are tolerating Pomalyst / dexamethasone and what, if any side effects?
Specifically, any nausea and vomiting? Sore throat?
She's only on day 6 of Pomalyst-dex. Before even starting the chemo, she was already having appetite/weight loss/nausea/extreme fatigue - all of which were due to the multiple myeloma being more active, the anemia it causes, and her kidneys not functioning as well - her creatinine went up to 1.5 (the high end of normal range for this lab is 1.2) and her BUN is up, and the CBC shows definite anemia.
She also did really poorly on the last round of melphalan and prednisone that she had been on. It really kicked her down - she got a really nasty head cold that lasted maybe 3 weeks. And I'm not so sure she hasn't caught another cold right now, as she now has a sore throat.
I do find sore throat being listed a side effect to Pomalyst, but am not clear if this is only in conjunction with an upper respiratory tract infection that might happen due to lowered immunity during chemo. Can sore throat (as in hurts terribly to swallow, even water) be caused by Pomalyst?
With the vomiting last night, I called her oncology office on-call doc who started my mom on ondansetron (anti-nausea), but still she only could eat one saltine and small cup of hot tea. This morning she took the next dose of anti-nausea, waited a good while, and was able to eat maybe five strawberries and a protein drink before vomiting. She didn't throw it all up, and is not nauseous ... hoping she kept some nutrients down.
Thankfully the nurse called from oncology office to follow up - I have to take her over for labs and possible IV fluids and IV anti-nausea. Not sure. But they said not to take her chemo dose.
I'm really worried on all counts.
1) If she cannot tolerate this chemo, what then? Maybe she can tolerate a 1 mg dose and have it still work since she IS so sensitive to meds (and she is also quick to respond - she went into a remission for almost 18 months with only twelve non-consecutive days of Revlimid/dex back in 2010 - she ended up in the hospital after only 6 days of the Revlimid/dex).
2) I'm anxious to see how her kidney functions are... and worried that her kidneys have gotten worse and that these side effects are being caused by increasing kidney failure (which would have the same symptoms) ... and that she is not responding at all to the chemo.
It is terrible seeing her so bad off. I also don't want to lose my Mom, she's my best friend, and I'm scared.
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Twi - Name: Twi
- Who do you know with myeloma?: My wonderful Mom, Janet
- When were you/they diagnosed?: May 2010
- Age at diagnosis: 70
Re: Pomalyst - dexamethasone side effects?
Hi Twi,
I'm so sorry to hear about your mom's troubles. She's lucky to have a caring daughter like you. I'm sure she appreciates all of your care.
I'm not sure if I'd be the best person to answer, since I've only done about a week and a half of Pomalyst so far. But here goes: No nausea so far, maybe slight occasional dizziness, but I can't say for sure it was the Pomalyst, since I'm also on Kyprolis (carfilzomib) and dex. Pretty sure it's not the dex since I've been on that before.
The Pomalyst website does indicate that 36% of patients experienced some nausea though. It affects everyone differently.
I would imagine that if this drug regimen doesn't work, there are others that may work better. I am always somewhat relieved when I see my myeloma specialist and he lists off all of the possible combinations. There are too many to keep up with. There are quite a number of drugs and then when you factor in different combinations, there are many ways to go.
Some that come to mind are Cytoxan [cyclophosphamide], bendamustine [Treanda], and Doxil [pegylated doxorubicin, Caelyx]. I think these can be combined with other drugs or given alone but most of them likely with dex. I'm no expert in any of this. I don't really know what goes with what. I only know that there a lot of options to keep this myeloma beast at bay for awhile.
I don't know what would be best with kidney problems. Maybe someone here with that experience could add their thoughts.
I hope they can make your mom feel better and find the right combo for her. Keeping positive thoughts for you both.
Joy
I'm so sorry to hear about your mom's troubles. She's lucky to have a caring daughter like you. I'm sure she appreciates all of your care.
I'm not sure if I'd be the best person to answer, since I've only done about a week and a half of Pomalyst so far. But here goes: No nausea so far, maybe slight occasional dizziness, but I can't say for sure it was the Pomalyst, since I'm also on Kyprolis (carfilzomib) and dex. Pretty sure it's not the dex since I've been on that before.
The Pomalyst website does indicate that 36% of patients experienced some nausea though. It affects everyone differently.
I would imagine that if this drug regimen doesn't work, there are others that may work better. I am always somewhat relieved when I see my myeloma specialist and he lists off all of the possible combinations. There are too many to keep up with. There are quite a number of drugs and then when you factor in different combinations, there are many ways to go.
Some that come to mind are Cytoxan [cyclophosphamide], bendamustine [Treanda], and Doxil [pegylated doxorubicin, Caelyx]. I think these can be combined with other drugs or given alone but most of them likely with dex. I'm no expert in any of this. I don't really know what goes with what. I only know that there a lot of options to keep this myeloma beast at bay for awhile.
I don't know what would be best with kidney problems. Maybe someone here with that experience could add their thoughts.
I hope they can make your mom feel better and find the right combo for her. Keeping positive thoughts for you both.
Joy
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Pomalyst - dexamethasone side effects?
I have just finished my 4th cycle of Pomalyst. I started in early February after being on Kyprolis for almost a year. Numbers with Kyprolis started going up so we switched to Pomalyst(2mg), dexamethasome(40 mg) and Biaxin. I have not had any side effects. A little dizziness every now and then, but this can also be caused by standing up from a sitting position too quickly.
I take my Pomalyst early in the morning. Two reasons. The two hours before taking it I am asleep and after I just don't eat anything (i.e. breakfast) for 2 hours This gives me the whole day and I don't have to worry about the 4 hour time period of no food and taking the pill in the middle of the 4 hours. I also take it the same time every day.
I have had no problems with kidneys, but my white and red blood cell counts are usually low every week when I go in for my dex IV. I will get a white blood cell shot and Aranesp for the the red count. I only got the shot for the white count this morning. Red count was ok.
My M-spike, IgG and kappa numbers have decreased considerably with the Pomalyst. I only get excited for about 15 minutes after my lab tests come back with decreases, thinking that they could go up the following month. Not sure if any of this helps. I have been on various treatments since the beginning of 2010.
I take my Pomalyst early in the morning. Two reasons. The two hours before taking it I am asleep and after I just don't eat anything (i.e. breakfast) for 2 hours This gives me the whole day and I don't have to worry about the 4 hour time period of no food and taking the pill in the middle of the 4 hours. I also take it the same time every day.
I have had no problems with kidneys, but my white and red blood cell counts are usually low every week when I go in for my dex IV. I will get a white blood cell shot and Aranesp for the the red count. I only got the shot for the white count this morning. Red count was ok.
My M-spike, IgG and kappa numbers have decreased considerably with the Pomalyst. I only get excited for about 15 minutes after my lab tests come back with decreases, thinking that they could go up the following month. Not sure if any of this helps. I have been on various treatments since the beginning of 2010.
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topper
Re: Pomalyst - dexamethasone side effects?
I was diagnosed with MGUS in 2003 and multiple myeloma 4/07. I've had bad reactions to thalidomide, Revlimid, and now Pomalyst. My scalp starts itichng and I break out in hives.
I don't mean this to be a downer, but I'm just adding my thoughts because I want those who don't do well on these drugs for whatever reason to know that some of us don't tolerate them well.
It seems that so many multiple myeloma folks do well on them for treatment and maintenance and I had hoped they would work for me - but, fortunately, the myeloma researchers have other meds to try on us, and maybe my doctor will find the right one/ones for me.
This month I was prescribed the usual 21 day Pomalyst 3mg. and methyl prednisone (2xweek). On Day 3 my scalp began itching, and I took the 3rd Pomalyst. When I woke during the night, my scalp was itching badly and when I looked in the mirror my face was red and swollen. I immediately took Benadryl [diphenhydramine]. The next morning and the following day, the puffiness and redness spread down my arms and I looked like I had a bad sunburn.
My myeloma specialist is not in the city where I live, but I checked in and sent a 'selfie'. and then went to my local oncologist and was given a Medrol Dose Pac which started clearing me up immediately.
My myeloma specialist thought we ought to try again and this time add an antihistiamine. I was to do the 3 pills (methyl prednison / Pomalyst / Zyrtec) for 2 days ONLY. Since I hadn't done the antihistamine before, and heard that folks on chemo meds often get that with their medication, I was willing to try it.
On Day 3 the itching was worse in my scalp, my face was red and puffy, and I could hardly see and the redness and hives spread to my face, arms, body, and legs. Again, I let my myeloma specialist know and went to my local oncologist and got another Medrol Dose Pac, which began clearing me up immediately.
I really didn't have any other side effects, but I couldn't go out in public! In fact I felt really good, considering how I looked! It also brought my CBC counts down and I caught a nasty cold.
I haven't gotten my multiple myeloma counts back, yet, so I don't know if the 5 pills helped with them.
My family and I have "voted Pomalyst off the Island".
I'm really sorry, too, because so many people in our group and in this Forum are helped by Revlimid long term and now Pomalyst.
But this is what we all do ... and we hope for the best.
Good luck and better health to all.
I don't mean this to be a downer, but I'm just adding my thoughts because I want those who don't do well on these drugs for whatever reason to know that some of us don't tolerate them well.
It seems that so many multiple myeloma folks do well on them for treatment and maintenance and I had hoped they would work for me - but, fortunately, the myeloma researchers have other meds to try on us, and maybe my doctor will find the right one/ones for me.
This month I was prescribed the usual 21 day Pomalyst 3mg. and methyl prednisone (2xweek). On Day 3 my scalp began itching, and I took the 3rd Pomalyst. When I woke during the night, my scalp was itching badly and when I looked in the mirror my face was red and swollen. I immediately took Benadryl [diphenhydramine]. The next morning and the following day, the puffiness and redness spread down my arms and I looked like I had a bad sunburn.
My myeloma specialist is not in the city where I live, but I checked in and sent a 'selfie'. and then went to my local oncologist and was given a Medrol Dose Pac which started clearing me up immediately.
My myeloma specialist thought we ought to try again and this time add an antihistiamine. I was to do the 3 pills (methyl prednison / Pomalyst / Zyrtec) for 2 days ONLY. Since I hadn't done the antihistamine before, and heard that folks on chemo meds often get that with their medication, I was willing to try it.
On Day 3 the itching was worse in my scalp, my face was red and puffy, and I could hardly see and the redness and hives spread to my face, arms, body, and legs. Again, I let my myeloma specialist know and went to my local oncologist and got another Medrol Dose Pac, which began clearing me up immediately.
I really didn't have any other side effects, but I couldn't go out in public! In fact I felt really good, considering how I looked! It also brought my CBC counts down and I caught a nasty cold.
I haven't gotten my multiple myeloma counts back, yet, so I don't know if the 5 pills helped with them.
My family and I have "voted Pomalyst off the Island".
I'm really sorry, too, because so many people in our group and in this Forum are helped by Revlimid long term and now Pomalyst.
But this is what we all do ... and we hope for the best.
Good luck and better health to all.
Re: Pomalyst - dexamethasone side effects?
HI, writing about my husband, he was diagnosed with myeloma 10 years ago. He was on several different treatments over the years. The last 5 years is what I'm writing about.
He was on Revlimid and dex. Dex changed his mood, so changed to Revlimid and prednisone which he took for 5 years. With Revlimid and prednisone his side effects were neuropathy, dizziness, some leg pain, loss of appetite, sometimes severe hiccups. When his numbers were stable, he took periodic breaks from medication to afford his body to self heal.
There was a lot of trial and error in the amounts of both Revlimid and prednisone that he took, ranging from 100 mg weekly to 100 mg monthly. His numbers did improve with Revlimid until last year. He had been off for a year and when he went back on it seemed to have stopped helping.
He was then approved for Pomalyst and prednisone. They started him out with 5 mg Pomalyst and 100 mg prednisone 21 on 7 off. He did not tolerate it and ended up in the hospital where they had to rehydrate him and consequentely lower the dose for the next two months.
Now, he is on 1 mg Pomalyst every other day, 10mg prednisone 4 tabs a week. Even with this lower dosage he is getting pretty severe back pain, some dizziness, upset stomach, and lots of leg pain. He has had x-rays of his kidneys and they said he has a questionable cyst which they are keeping tabs on. Not sure if the medication caused it.
He was on Revlimid and dex. Dex changed his mood, so changed to Revlimid and prednisone which he took for 5 years. With Revlimid and prednisone his side effects were neuropathy, dizziness, some leg pain, loss of appetite, sometimes severe hiccups. When his numbers were stable, he took periodic breaks from medication to afford his body to self heal.
There was a lot of trial and error in the amounts of both Revlimid and prednisone that he took, ranging from 100 mg weekly to 100 mg monthly. His numbers did improve with Revlimid until last year. He had been off for a year and when he went back on it seemed to have stopped helping.
He was then approved for Pomalyst and prednisone. They started him out with 5 mg Pomalyst and 100 mg prednisone 21 on 7 off. He did not tolerate it and ended up in the hospital where they had to rehydrate him and consequentely lower the dose for the next two months.
Now, he is on 1 mg Pomalyst every other day, 10mg prednisone 4 tabs a week. Even with this lower dosage he is getting pretty severe back pain, some dizziness, upset stomach, and lots of leg pain. He has had x-rays of his kidneys and they said he has a questionable cyst which they are keeping tabs on. Not sure if the medication caused it.
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alohajerome
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