Just got my labs back and this is what they are:
My m protein went up to 0.9 g/dL (9 g/L), quite a jump from 0.5 g/dL, and has never happened before.
Kappa light chains stayed about the same, although increased from 829 to 890.
So, clearly after my 3rd cycle of Pomalyst, it is not working.
So, would we increase Pomalyst to 3 mg and do the best with low neutrophils? Or switch completely to Velcade and dex?
I see my doctor next week as he's still on vacation, but I'm pretty OCD, so I'm trying to get a heads up on what other people have done ...
Any thoughts? Ideas? I'm confident my doctor will have an answer, but I am pretty depressed about it.
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• Page 1 of 1
Re: Pomalyst not working - what next?
Hi Christina,
Sorry to hear that the Pomalyst isn't working for you.
It's really hard to discuss what someone in your situation should do next without knowing more about the overall treatment history. Just as a simple example, whether or not you should go on Velcade next depends to a large extent on how long ago, if ever, you were treated with Velcade, and if you were treated with Velcade, for how long.
I know that a lot of your previous treatment history can be found in this earlier forum discussion,
"Meaning of high kappa light chains?" (started Feb 20, 2015)
which I think partly contributed to the decision to have you go on to Pomalyst, but maybe you could summarize once again for us what you've been treated with, when, and for how long? Also, have you ever had a transplant, and are you currently getting dex with your Pomalyst?
Also, different units are often used when reporting free light chain results, so it's generally good to include units with them. (Including units and/or reference ranges is generally a helpful thing to do when posting any lab results here in the forum. Different labs sometimes use different units, and they sometimes even have different reference ranges. Also, different units are often used in different countries.)
Sorry to hear that the Pomalyst isn't working for you.
It's really hard to discuss what someone in your situation should do next without knowing more about the overall treatment history. Just as a simple example, whether or not you should go on Velcade next depends to a large extent on how long ago, if ever, you were treated with Velcade, and if you were treated with Velcade, for how long.
I know that a lot of your previous treatment history can be found in this earlier forum discussion,
"Meaning of high kappa light chains?" (started Feb 20, 2015)
which I think partly contributed to the decision to have you go on to Pomalyst, but maybe you could summarize once again for us what you've been treated with, when, and for how long? Also, have you ever had a transplant, and are you currently getting dex with your Pomalyst?
Also, different units are often used when reporting free light chain results, so it's generally good to include units with them. (Including units and/or reference ranges is generally a helpful thing to do when posting any lab results here in the forum. Different labs sometimes use different units, and they sometimes even have different reference ranges. Also, different units are often used in different countries.)
Re: Pomalyst not working - what next?
Yes to what you asked. Transplant. Dex with treatments. I was on Revlimid for 5 years and just started the Pomalyst. No to Velcade. Haven't done that yet.
I guess it's wait and see what he says next week. I have to say though, I am pretty shocked Pomalyst isn't doing it. I felt it would. I'm only on 2 mg, so maybe that's a consideration. Last time I asked him about increasing the dose, he said he didn't think he would, as my ANC tanks. It does recover, though, in about 10 days.
Geez, I don't know, just depressed about it.
I guess it's wait and see what he says next week. I have to say though, I am pretty shocked Pomalyst isn't doing it. I felt it would. I'm only on 2 mg, so maybe that's a consideration. Last time I asked him about increasing the dose, he said he didn't think he would, as my ANC tanks. It does recover, though, in about 10 days.
Geez, I don't know, just depressed about it.
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Christina - Name: Christina
- When were you/they diagnosed?: June2005
- Age at diagnosis: 52
Re: Pomalyst not working - what next?
Hi Christina,
You never had any Velcade ... ever? Not even before your transplant? That wouldn't be unheard of, but I thought I read somewhere here in the forum that you had induction therapy with Velcade, and one or two other drugs, prior to your transplant.
I can understand your not being happy about what's happened. Remember, though, that you've still got a lot of different treatment options, even if you've had Velcade in the past.
You never had any Velcade ... ever? Not even before your transplant? That wouldn't be unheard of, but I thought I read somewhere here in the forum that you had induction therapy with Velcade, and one or two other drugs, prior to your transplant.
I can understand your not being happy about what's happened. Remember, though, that you've still got a lot of different treatment options, even if you've had Velcade in the past.
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Boris Simkovich - Name: Boris Simkovich
Founder
The Myeloma Beacon
Re: Pomalyst not working - what next?
Hi Boris,
No, in my initial treatment, I don't think Velcade was available (2005). I did, Doxil, vincristine, and dex, then transplant. No maintenance till I relapsed in 2010.
No, in my initial treatment, I don't think Velcade was available (2005). I did, Doxil, vincristine, and dex, then transplant. No maintenance till I relapsed in 2010.
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Christina - Name: Christina
- When were you/they diagnosed?: June2005
- Age at diagnosis: 52
Re: Pomalyst not working - what next?
Hi Christina,
Because you haven't ever been treated with Velcade, or any other proteasome inhibitor, there really are a number of options open to you at this point.
As you said, one option is to increase the dose of the Pomalyst that you're taking. However, your M-spike has increased on it, and your kappa free light chains apparently never decreased. Also, you've had problems with your white cells going down while you've been treated with it.
Let's also not forget that, before this, you were treated for five years with Revlimid, which is a close relative of Pomalyst. So, although Pomalyst will sometimes work in patients who have had Revlimid before, it's less likely to work in those patients.
But, yes, you could try increasing the dose. Or another option would be to add the antibiotic Biaxin (clarithromycin) to your treatment regimen. There have been some studies that show that the combination of Biaxin, Pomalyst, and dexamethasone can be effective. Biaxin seems to increase the efficacy of the dexamethasone and, perhaps, the Pomalyst.
You could add Velcade to the Pomalyst, or perhaps Kyprolis, or you could just switch completely to one of those two, perhaps combined with something else, such as Cytoxan. The combination of Pomalyst, Kyprolis, and dexamethasone is one of the most powerful combinations of myeloma treatments you can get. However, once again, Pomalyst isn't doing much for you right now, so I'm just not sure that it would bring much to the table.
Remember, Velcade and Kyprolis are in the same family of drugs, known as proteasome inhibitors. Since you haven't been treated with Velcade, there's a good chance you'll respond to one of those drugs. Because you've already relapsed twice, though, it may be better to go with something like Kyprolis, which many think has more activity than Velcade.
There are a couple of other options: daratumumab (by participating in its Expanded Access Program); Treanda (bendamustine), which is related to melphalan and Cytoxan; and Farydak (panobinostat).
Now that I think about it, because Farydak is approved for use in combination with Velcade and dexamethasone, it may be an option your doctors will seriously consider.
The one thing you also need to start thinking about is the possibility of a second transplant. If you go that route, you'll want to figure out some way to bring your numbers down so that they are already in good shape before the transplant.
Also, depending your general health right now, you may want to consider a donor (allogeneic) transplant, which means you should consider having testing done to see if any of your siblings (if you have any) are a match, or if there is a match in the donor registry. Keep in mind, though, that donor transplants generally work best when they're done after a myeloma patient has gone through their first treatment regimen, and reached a complete response, or close to it. It can work in other situations, as well, but it's not as likely to do so.
I know I've given you a lot to chew on, and I hope it hasn't been too much. I just want you to realize that there are a lot of options, even if you can't get the Pomalyst to work. I haven't even discussed some of the drugs that are likely to become available next year and the years after that.
Please be sure to figure out some way to see a myeloma specialist about your situation. Now is the time where you really need one. You're no longer just Jenny-Newly-Diagnosed-Multiple-Myeloma-Patient. You've got a long treatment history behind you that matters a lot when it comes to making a decision about how your disease should be treated.
Good luck!
Because you haven't ever been treated with Velcade, or any other proteasome inhibitor, there really are a number of options open to you at this point.
As you said, one option is to increase the dose of the Pomalyst that you're taking. However, your M-spike has increased on it, and your kappa free light chains apparently never decreased. Also, you've had problems with your white cells going down while you've been treated with it.
Let's also not forget that, before this, you were treated for five years with Revlimid, which is a close relative of Pomalyst. So, although Pomalyst will sometimes work in patients who have had Revlimid before, it's less likely to work in those patients.
But, yes, you could try increasing the dose. Or another option would be to add the antibiotic Biaxin (clarithromycin) to your treatment regimen. There have been some studies that show that the combination of Biaxin, Pomalyst, and dexamethasone can be effective. Biaxin seems to increase the efficacy of the dexamethasone and, perhaps, the Pomalyst.
You could add Velcade to the Pomalyst, or perhaps Kyprolis, or you could just switch completely to one of those two, perhaps combined with something else, such as Cytoxan. The combination of Pomalyst, Kyprolis, and dexamethasone is one of the most powerful combinations of myeloma treatments you can get. However, once again, Pomalyst isn't doing much for you right now, so I'm just not sure that it would bring much to the table.
Remember, Velcade and Kyprolis are in the same family of drugs, known as proteasome inhibitors. Since you haven't been treated with Velcade, there's a good chance you'll respond to one of those drugs. Because you've already relapsed twice, though, it may be better to go with something like Kyprolis, which many think has more activity than Velcade.
There are a couple of other options: daratumumab (by participating in its Expanded Access Program); Treanda (bendamustine), which is related to melphalan and Cytoxan; and Farydak (panobinostat).
Now that I think about it, because Farydak is approved for use in combination with Velcade and dexamethasone, it may be an option your doctors will seriously consider.
The one thing you also need to start thinking about is the possibility of a second transplant. If you go that route, you'll want to figure out some way to bring your numbers down so that they are already in good shape before the transplant.
Also, depending your general health right now, you may want to consider a donor (allogeneic) transplant, which means you should consider having testing done to see if any of your siblings (if you have any) are a match, or if there is a match in the donor registry. Keep in mind, though, that donor transplants generally work best when they're done after a myeloma patient has gone through their first treatment regimen, and reached a complete response, or close to it. It can work in other situations, as well, but it's not as likely to do so.
I know I've given you a lot to chew on, and I hope it hasn't been too much. I just want you to realize that there are a lot of options, even if you can't get the Pomalyst to work. I haven't even discussed some of the drugs that are likely to become available next year and the years after that.
Please be sure to figure out some way to see a myeloma specialist about your situation. Now is the time where you really need one. You're no longer just Jenny-Newly-Diagnosed-Multiple-Myeloma-Patient. You've got a long treatment history behind you that matters a lot when it comes to making a decision about how your disease should be treated.
Good luck!
Re: Pomalyst not working - what next?
Wow, TerryH. Thank you for such a detailed response. You sound like you are doctor / researcher, or very smart.
I did in fact just go to Seatle Cancer Center for a second opinion. I thought I would be able to consult with him regularly after I saw him, but it seems it was just a second opinion. He only treats myeloma and some lymphoma and was very helpful. He, like you you, said when Pomalyst stops working (this was just at the beginning of my third cycle, so he didn't know these latest numbers), that I probably should move to a proteasome inhibitors such as Velcade. He suggested CyBorD, so it'll remain to be seen what my doctor thinks.
There's a lot to think about with what you said.
I think this fall I'll try and go to UCSF, as that's a drive for me (3 hours). I'm not sure how that would work as I don't want another second opinion, but someone I can email or consult with.
I'm not sure about a second transplant. I'd have to think hard on that one. It wasn't something I was working toward in getting my numbers down.
Overall, at least I feel good, and my health otherwise is excellent. But things can change quickly, as we all know.
I'll be sure to update after I see my doctor this coming week.
I did in fact just go to Seatle Cancer Center for a second opinion. I thought I would be able to consult with him regularly after I saw him, but it seems it was just a second opinion. He only treats myeloma and some lymphoma and was very helpful. He, like you you, said when Pomalyst stops working (this was just at the beginning of my third cycle, so he didn't know these latest numbers), that I probably should move to a proteasome inhibitors such as Velcade. He suggested CyBorD, so it'll remain to be seen what my doctor thinks.
There's a lot to think about with what you said.
I think this fall I'll try and go to UCSF, as that's a drive for me (3 hours). I'm not sure how that would work as I don't want another second opinion, but someone I can email or consult with.
I'm not sure about a second transplant. I'd have to think hard on that one. It wasn't something I was working toward in getting my numbers down.
Overall, at least I feel good, and my health otherwise is excellent. But things can change quickly, as we all know.
I'll be sure to update after I see my doctor this coming week.
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Christina - Name: Christina
- When were you/they diagnosed?: June2005
- Age at diagnosis: 52
Re: Pomalyst not working - what next?
Update after doctor visit:
Well, he wants me to try the full dose of Pomalyst at 4 mg. I'll get a blood test a week after I start and see how my WBC are. I think he wants to see if the full dose will do something and if I will tolerate it. I'm okay with this, and I'll be extra vigilant about how I'm feeling.
So, another cycle, another month.
Well, he wants me to try the full dose of Pomalyst at 4 mg. I'll get a blood test a week after I start and see how my WBC are. I think he wants to see if the full dose will do something and if I will tolerate it. I'm okay with this, and I'll be extra vigilant about how I'm feeling.
So, another cycle, another month.
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Christina - Name: Christina
- When were you/they diagnosed?: June2005
- Age at diagnosis: 52
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