My oncologist has finally confirmed that the increases I posted about in this other forum thread indicate a relapse. He is now working on developing another regimen for me. The disappointing thing is that I think he should have been working on an alternative all along. This has been going on for months.
The lesson I have learned and would like to share is that if your markers (free light chains in my case), start increasing, you should insist on beginning work on another regimen. Don't wait for "clinical" signs of relapse, and especially don't wait for the increase to put you outside the complete response parameters! If free light chains are steadily increasing, do not assume this is insignificant or due to "measurement error".
My regimen consisted of Kyprolis, Cytoxan (cyclophosphamide), and dexamethasone. It is the third one that has failed in the eighteen months since I have had this disease.
I am thinking of going to hospice at this point. I am so tired of this. And I never felt very well, even after I was pronounced in complete response: Continued extreme bone pain and terrible fatigue. My immunoglobulins also never recovered, so I had to have IVIG infusions once a month.
I truly felt I was getting treated just to stay alive so I could be treated. I am beginning to realize that this is perhaps not worth it.
Forums
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Relapse on Kyprolis, cyclophosphamide, and dexamethasone
Mr. PH:
Understandably, you are very upset. I am very sorry to hear about the relapse. On the other hand, it appears to be a relapse before bad side effects have kicked in, which is not the worst possible scenario. So I hope that your team can develop an appropriate response. For what its worth, I agree with your sentiment about trying to think one step ahead (and in pushing the doctors in that direction, if needs be), but most importantly, I hope that you can get your situation under control quickly. Best of luck to you.
Understandably, you are very upset. I am very sorry to hear about the relapse. On the other hand, it appears to be a relapse before bad side effects have kicked in, which is not the worst possible scenario. So I hope that your team can develop an appropriate response. For what its worth, I agree with your sentiment about trying to think one step ahead (and in pushing the doctors in that direction, if needs be), but most importantly, I hope that you can get your situation under control quickly. Best of luck to you.
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JPC - Name: JPC
Re: Relapse on Kyprolis, cyclophosphamide, and dexamethasone
Thank you, JPC.
You are very kind, and I felt much better after reading your encouraging post.
You are very kind, and I felt much better after reading your encouraging post.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Relapse on Kyprolis, cyclophosphamide, and dexamethasone
I'm sorry to hear that your doctor believes you have relapsed.
Whether or not to go into hospice is of course a very personal decision. All I can tell you is, to me, it seems like you still have a number of options that you shouldn't disregard.
One of them, of course, is to have a transplant. I don't believe you have had one yet, so perhaps it is something to consider at this point. You could perhaps undergoing a bridging therapy such as PACE or VTD-PACE, then have the transplant.
Another option, of course, is a Darzalex-based regimen. Keep in mind that Darzalex is generally very effective. You could under Darzalex-based therapy as induction prior to a transplant, or just do it instead of a transplant.
There also are lots of clinical trial options.
Let us know what you are thinking, or what questions you have, and we can try to help.
Best wishes to you.
Whether or not to go into hospice is of course a very personal decision. All I can tell you is, to me, it seems like you still have a number of options that you shouldn't disregard.
One of them, of course, is to have a transplant. I don't believe you have had one yet, so perhaps it is something to consider at this point. You could perhaps undergoing a bridging therapy such as PACE or VTD-PACE, then have the transplant.
Another option, of course, is a Darzalex-based regimen. Keep in mind that Darzalex is generally very effective. You could under Darzalex-based therapy as induction prior to a transplant, or just do it instead of a transplant.
There also are lots of clinical trial options.
Let us know what you are thinking, or what questions you have, and we can try to help.
Best wishes to you.
Re: Relapse on Kyprolis, cyclophosphamide, and dexamethasone
Hi Mr. PH,
I concur with what Terry H has said about other options! Having had a stem cell transplant a few years ago, I remember it as being difficult, but it did help me out in this journey. My knowledge of 'hospice' is that one can no longer take one's chemotherapy medications there, but it might be different where you live.
I have also heard good reports about Darzalex, and I really hope it is funded by our provincial government soon. (I think it is available thru clinical trials or special access already). So you might look into those possibilities.
All the best!
I concur with what Terry H has said about other options! Having had a stem cell transplant a few years ago, I remember it as being difficult, but it did help me out in this journey. My knowledge of 'hospice' is that one can no longer take one's chemotherapy medications there, but it might be different where you live.
I have also heard good reports about Darzalex, and I really hope it is funded by our provincial government soon. (I think it is available thru clinical trials or special access already). So you might look into those possibilities.
All the best!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Relapse on Kyprolis, cyclophosphamide, and dexamethasone
Mr. PH,
I want to add to what Nancy and TerryH have said. You have more options besides Darzalex and an autologous stem cell transplant. There is also the monoclonal antibody Empliciti (elotuzumab). Some people that did not show any benefit from Darzalex have benefited from Empliciti. It usually works best when combined with dex and either an immunomodulatory agent (IMID) or proteasome inhibitor (PI). Both Empliciti and Darzalex are relatively new, having just been approved by the FDA as well as in Canada and Europe.
Good luck to you.
I want to add to what Nancy and TerryH have said. You have more options besides Darzalex and an autologous stem cell transplant. There is also the monoclonal antibody Empliciti (elotuzumab). Some people that did not show any benefit from Darzalex have benefited from Empliciti. It usually works best when combined with dex and either an immunomodulatory agent (IMID) or proteasome inhibitor (PI). Both Empliciti and Darzalex are relatively new, having just been approved by the FDA as well as in Canada and Europe.
Good luck to you.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Relapse on Kyprolis, cyclophosphamide, and dexamethasone
Ron's point about Empliciti is well taken. It shouldn't be ignored as an option. I personally think you are more likely to get a response to Darzalex, and the response is more likely to be deep with Darzalex. That doesn't mean, however, that you should ignore Empliciti as an option.
One option that hasn't been mentioned so far is Venclexta (venetoclax) combined with Velcade and dex. The regimen has shown rather impressive anti-myeloma activity.
There's also Keytruda (pembrolizumab) combined with Revlimid and dex, and Farydak (panobinostat) combined with Velcade and dex.
There also are treatments only available via trials, but I'm sure you know that already.
One option that hasn't been mentioned so far is Venclexta (venetoclax) combined with Velcade and dex. The regimen has shown rather impressive anti-myeloma activity.
There's also Keytruda (pembrolizumab) combined with Revlimid and dex, and Farydak (panobinostat) combined with Velcade and dex.
There also are treatments only available via trials, but I'm sure you know that already.
Re: Relapse on Kyprolis, cyclophosphamide, and dexamethasone
Thanks TerryH, Nancy, and Ron.
You are all quite right: I still have lots of options. The relapse / response / relapse sequence can really play on one's nerves, but that is something I am sure you are all familiar with.
I never responded to Velcade, and I have relapsed on Revlimid, so I am not sure I would get much benefit from those agents. Then again, I have read that even when one becomes refractory to a given drug, one may still respond to a combination involving it.
When I was diagnosed in 2015, I was rejected as a candidate for an autologous stem cell transplant, but perhaps I would pass muster now. It's not a treatment I am enthusiastic about, however.
Still, all options are worth a look and even a second look, so thanks again.
I believe my doctor is planning to increase my Kyprolis and to add Pomalyst to the Kyprolis and dex I am now taking. I will also be reevaluated for an autologous transplant in a few weeks.
My one concern with this approach is the potential to develop peripheral neuropathy with the Pomalyst. That's one source of pain I have managed to avoid so far, and I would be loathe to risk adding that to my already high level of bone pain.
Thanks again, everyone.
You are all quite right: I still have lots of options. The relapse / response / relapse sequence can really play on one's nerves, but that is something I am sure you are all familiar with.
I never responded to Velcade, and I have relapsed on Revlimid, so I am not sure I would get much benefit from those agents. Then again, I have read that even when one becomes refractory to a given drug, one may still respond to a combination involving it.
When I was diagnosed in 2015, I was rejected as a candidate for an autologous stem cell transplant, but perhaps I would pass muster now. It's not a treatment I am enthusiastic about, however.
Still, all options are worth a look and even a second look, so thanks again.
I believe my doctor is planning to increase my Kyprolis and to add Pomalyst to the Kyprolis and dex I am now taking. I will also be reevaluated for an autologous transplant in a few weeks.
My one concern with this approach is the potential to develop peripheral neuropathy with the Pomalyst. That's one source of pain I have managed to avoid so far, and I would be loathe to risk adding that to my already high level of bone pain.
Thanks again, everyone.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Relapse on Kyprolis, cyclophosphamide, and dexamethasone
Keep at it, Mr Potatohead.
You still have options. It's only natural to get down at times.
Regards
Dean
You still have options. It's only natural to get down at times.
Regards
Dean
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Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
Re: Relapse on Kyprolis, cyclophosphamide, and dexamethasone
Many thanks for the encouragement, Dean.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
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