So finally after another cycle of Pomalyst (pomalidomide, Imnovid) at the 4 mg dose, my numbers went up very slightly. But since this is now the 4th cycle at 4 mg, after I did 3 cycles at the 2 mg, it is clear that Pomalyst isn't doing anything for me. I also have increased rib pain on my right side, and even though the X-ray didn't show a fracture, it's likely an active lesion. The radiologist couldn't really tell if the lesion was old or new, but regardless, there is some pain there.
So next week, I'm starting Velcade. I've never had Velcade subq (subcutaneous) and am wondering if there are any things to be aware of. My husband will drive me into Sacramento for this but he can't be taking me to all my weekly appointments since he works. I'm actually looking forward to this in hopes my kappa free light chains get reduced and M-protein as well. Right now my M-protein is at 0.9 g/dL so that's the highest it's been since way back.
So, anyone have suggestions or how they feel? I'll take the dex when I get home so that'll be a little different to as usually I would take it at night with the Pomalyst (once a week).
Forums
Re: Pomalyst didn't really work - Velcade is next
I got Velcade subcutaneously 3 weeks and then one week pause last year.
I only experienced a few absolutely tolerable side effects. Slight loss of feeling in the feet & toes. Some strange colors around the injection point, no problems.
The experience with dexamethasone is very different from person to person. I was told to take it in the morning, but it still kept me awake during many nights.
I only experienced a few absolutely tolerable side effects. Slight loss of feeling in the feet & toes. Some strange colors around the injection point, no problems.
The experience with dexamethasone is very different from person to person. I was told to take it in the morning, but it still kept me awake during many nights.
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: Pomalyst didn't really work - Velcade is next
I self inject myself with Velcade. Only side effects are a little itching and redness at the injection site and some minor GI tract issues.
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coop223 - Name: derek cooper
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: November 2011
- Age at diagnosis: 57
Re: Pomalyst didn't really work - Velcade is next
I had bad rashes that required Benadryl (diphenhydramine) which then makes you sleepy to drive home.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Pomalyst didn't really work - Velcade is next
Watch the peripheral neuropathy (PN) with Velcade. My husband seemed fine during his RVD treatment. It wasn't until the last 2 treatments and after he has been burdened with neuropathy.
With Velcade the PN may not be permanent, but it isn't fun for him while we wait to see if it is temporary. Looking into natural ways to address the PN before we turn to more drugs.
With Velcade the PN may not be permanent, but it isn't fun for him while we wait to see if it is temporary. Looking into natural ways to address the PN before we turn to more drugs.
Re: Pomalyst didn't really work - Velcade is next
Hi Christina,
Sorry that the Pomalyst didn't seem to do much for you. It's not that surprising, however, given how long you were treated with Revlimid, and that you eventually stopped responding to Revlimid. Pomalyst (and thalidomide) are in the same class of drugs as Revlimid, so if you've been treated with Revlimid for a long time and stopped responding to it, you're less likely to respond to either Pomalyst or thalidomide.
That doesn't mean it wasn't worth trying Pomalyst. It's just not that surprising that you didn't get that much of a response to it.
Are you completely sure you never have been treated with Velcade? You've written a couple of times in the forum that your initial treatment was 'Doxil, dex, and something else you can't remember'. Usually, if someone with myeloma is treated with Doxil and dex, then they're also given Velcade.
The other possibility is that you were treated with an older regimen known as "VAD" – vincristine, doxorubicin, and dexamethasone. Given that your first treatment was 10 years ago, maybe it was this treatment regimen that you received. At that time, Velcade was still relatively new, since it was approved in 2003.
And, as an aside for those who disagree with what I wrote about responses to Pomalyst and previous treatment with Revlimid ...
Please look at actual study results. You probably have read or heard sound bites like "there was no significant difference in the response to Pomalyst treatment between patients who were, and were not, previously treated with Revlimid." But the key word in that sound bite is "significant".
In every study that I've looked at with results on this issue, there has been a difference, and the Pomalyst response rate has always been lower in patients previously treated with Revlimid. It's just that the number of patients in the studies usually isn't large enough to make the differences statistically significant – even though the differences are often noticeable.
The same thing is true, by the way, for studies looking at responses to Kyprolis treatment and whether the response varies depending on whether patients have been previously treated with Velcade, which is in the same class of drugs as Kyprolis. Again, there usually is no statistically significant difference. But prior Velcade exposure, and being refractory to Velcade, does tend to lower responses to Kyprolis, just as prior Revlimid exposure does tend to lower responses to Pomalyst.
Sorry that the Pomalyst didn't seem to do much for you. It's not that surprising, however, given how long you were treated with Revlimid, and that you eventually stopped responding to Revlimid. Pomalyst (and thalidomide) are in the same class of drugs as Revlimid, so if you've been treated with Revlimid for a long time and stopped responding to it, you're less likely to respond to either Pomalyst or thalidomide.
That doesn't mean it wasn't worth trying Pomalyst. It's just not that surprising that you didn't get that much of a response to it.
Are you completely sure you never have been treated with Velcade? You've written a couple of times in the forum that your initial treatment was 'Doxil, dex, and something else you can't remember'. Usually, if someone with myeloma is treated with Doxil and dex, then they're also given Velcade.
The other possibility is that you were treated with an older regimen known as "VAD" – vincristine, doxorubicin, and dexamethasone. Given that your first treatment was 10 years ago, maybe it was this treatment regimen that you received. At that time, Velcade was still relatively new, since it was approved in 2003.
And, as an aside for those who disagree with what I wrote about responses to Pomalyst and previous treatment with Revlimid ...
Please look at actual study results. You probably have read or heard sound bites like "there was no significant difference in the response to Pomalyst treatment between patients who were, and were not, previously treated with Revlimid." But the key word in that sound bite is "significant".
In every study that I've looked at with results on this issue, there has been a difference, and the Pomalyst response rate has always been lower in patients previously treated with Revlimid. It's just that the number of patients in the studies usually isn't large enough to make the differences statistically significant – even though the differences are often noticeable.
The same thing is true, by the way, for studies looking at responses to Kyprolis treatment and whether the response varies depending on whether patients have been previously treated with Velcade, which is in the same class of drugs as Kyprolis. Again, there usually is no statistically significant difference. But prior Velcade exposure, and being refractory to Velcade, does tend to lower responses to Kyprolis, just as prior Revlimid exposure does tend to lower responses to Pomalyst.
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JimNY
Re: Pomalyst didn't really work - Velcade is next
Thanks, JimNY.
Yes, we gave it a good try. First the 2 mg of Pomalyst, then the 4 mg. But I'm ready to start the Velcade.
I'm pretty sure it was Doxil, vincristine and dex. But the doxorubicin sounds similar to Doxil, so I'll check with my doctor.
I'm ready for this so just getting myself pumped up ... ha ha.
I'm a little nervous about the neuropathy, but I guess it's just wait and see.
Yes, we gave it a good try. First the 2 mg of Pomalyst, then the 4 mg. But I'm ready to start the Velcade.
I'm pretty sure it was Doxil, vincristine and dex. But the doxorubicin sounds similar to Doxil, so I'll check with my doctor.
I'm ready for this so just getting myself pumped up ... ha ha.
I'm a little nervous about the neuropathy, but I guess it's just wait and see.
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Christina - Name: Christina
- When were you/they diagnosed?: June2005
- Age at diagnosis: 52
Re: Pomalyst didn't really work - Velcade is next
Hi Christina,
The active ingredient in Doxil is, in fact, doxorubicin. It's a special formulation of doxorubicin designed to increase the length of time the doxorubicin stays in the body. The formulation is also sold under the brand names Caelyx and Myocet in countries other than the US.
The regular formulation of doxorubicin originally was sold under the brand name Adriamycin, which is why the combination of vincristine, doxorubicin, and dexamethasone is often abbreviated "VAD".
It's possible that you received Doxil instead of standard doxorubicin in combination with vincristine and dexamethasone. There was a study done that compares Doxil + vincristine + dex versus doxorubicin + vincristine + dex:
RM Rifkin et al, "Pegylated liposomal doxorubicin, vincristine, and dexamethasone provide significant reduction in toxicity compared with doxorubicin, vincristine, and dexamethasone in patients with newly diagnosed multiple myeloma," Cancer, Feb 2006 (full text of article)
and I believe the Doxil-based combination was seeing some use around the time you were diagnosed.
If it's really the case that you have never been treated with Velcade, I think there's a good chance that you'll respond to the Velcade and dex combination. Neuropathy is probably the main thing you'll have to watch out for. Be sure to let your doctor know about any unusual tingling or loss of sensation you experience, even if it seems minor.
Good luck!
The active ingredient in Doxil is, in fact, doxorubicin. It's a special formulation of doxorubicin designed to increase the length of time the doxorubicin stays in the body. The formulation is also sold under the brand names Caelyx and Myocet in countries other than the US.
The regular formulation of doxorubicin originally was sold under the brand name Adriamycin, which is why the combination of vincristine, doxorubicin, and dexamethasone is often abbreviated "VAD".
It's possible that you received Doxil instead of standard doxorubicin in combination with vincristine and dexamethasone. There was a study done that compares Doxil + vincristine + dex versus doxorubicin + vincristine + dex:
RM Rifkin et al, "Pegylated liposomal doxorubicin, vincristine, and dexamethasone provide significant reduction in toxicity compared with doxorubicin, vincristine, and dexamethasone in patients with newly diagnosed multiple myeloma," Cancer, Feb 2006 (full text of article)
and I believe the Doxil-based combination was seeing some use around the time you were diagnosed.
If it's really the case that you have never been treated with Velcade, I think there's a good chance that you'll respond to the Velcade and dex combination. Neuropathy is probably the main thing you'll have to watch out for. Be sure to let your doctor know about any unusual tingling or loss of sensation you experience, even if it seems minor.
Good luck!
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JimNY
Re: Pomalyst didn't really work - Velcade is next
Hi Christina,
I had to leave Revlimid after 4+ years and started Velcade/dex weekly. I think it makes me more fatigued than I used to be and I can feel the neuropathy I already had creeping a little (maybe just because it's colder now too, not totally sure). A little bit of gastro issues too, slight constipation.
Also the first two nights of sleep after treatment are problematic. I can usually go down for 4 hours or so, but then I am awake, often with a little acid reflux adding to the discomfort. Then you have the 'I feel good/wow I got tired fast' cycle that wears off after a couple of days.
It's not bad, I have been at it since May. I did talk to the onc about the dex early on as I was having trouble controlling the emotional volcano and he reduced the dose some, which has made a big difference (little volcano now, usually controllable).
I had to leave Revlimid after 4+ years and started Velcade/dex weekly. I think it makes me more fatigued than I used to be and I can feel the neuropathy I already had creeping a little (maybe just because it's colder now too, not totally sure). A little bit of gastro issues too, slight constipation.
Also the first two nights of sleep after treatment are problematic. I can usually go down for 4 hours or so, but then I am awake, often with a little acid reflux adding to the discomfort. Then you have the 'I feel good/wow I got tired fast' cycle that wears off after a couple of days.
It's not bad, I have been at it since May. I did talk to the onc about the dex early on as I was having trouble controlling the emotional volcano and he reduced the dose some, which has made a big difference (little volcano now, usually controllable).
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allenbonslett - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 12/2003
- Age at diagnosis: 43
Re: Pomalyst didn't really work - Velcade is next
Allenbonslett,
Thanks for your experience. It sounds like we were on Revlimid for almost the same amount of time.
Since it's been since May that you've been on Velcade, how are the results?
Thanks for your experience. It sounds like we were on Revlimid for almost the same amount of time.
Since it's been since May that you've been on Velcade, how are the results?
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Christina - Name: Christina
- When were you/they diagnosed?: June2005
- Age at diagnosis: 52
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