Dear Nancy,
Thank you for your post and your suggestions. I do have all manner of support from family, friends, and a counselor. I want to echo your view on how important that is for anyone fighting multiple myeloma.
My point was really that the highly-touted progress against multiple myeloma applies largely to those who do not have aggressive disease, and that there should be more basic research rather than drug development alone, if people like me are to be helped. The best I get is a short-lived response, and then the myeloma is on the attack again. At a certain point, you decide that it just is not worth it, especially in light of the very real damage the "novel" agents (along with supportive therapies like Zometa) can do to your body.
For example, Kyprolis briefly drove my light chains down to complete response territory, but my hemoglobin kept sinking. When I asked my oncologist for an explanation, he told me that I had kidney damage -- likely permanent -- from the drugs he used to fight the myeloma, and that kidney damage was responsible for my low hemoglobin. And he was quite cautious about tuning my drug dosage to minimize that kind of outcome. But it happened anyway.
I also have shortness of breath from Kyprolis and bowel and stomach pains from Pomalyst. On top of all of that, I have constant bone pain, for which there is no restorative therapy (and no research that I know of to develop a treatment for it).
Now, are all those drawbacks worth a succession of very brief responses to treatment? Given, that you die once you have worked your way through the drug list? That is what I have been wrestling with, and the conclusion I have arrived at (just for me) is No.
I was just curious about whether others felt the same way.
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: Bad reaction to Pomalyst & thoughts on further treatment
Dear rumnting,
My deepest apologies for not realizing that your husband had succumbed to myeloma, and my prayers and condolences on his passing.
My deepest apologies for not realizing that your husband had succumbed to myeloma, and my prayers and condolences on his passing.
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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: Bad reaction to Pomalyst & thoughts on further treatment
Hi Mr. Potatohead,
Sorry to hear of your continued struggles in finding a tolerable, effective therapy. I think your story is much more common than you think. If you notice the posts here in the forum, most of the patients that say they are doing well are newly diagnosed patients that are responding to their induction.
You wrote:
Many myeloma specialists are paid to say what they say about myeloma therapies, which is why I tell everyone to read peer reviewed papers and draw your own conclusions, not just listen what your hear in a YouTube video or what you see in the conclusion section of a study.
With respect to the progress they are discussing, myeloma is still considered to be a poor outcome blood cancer when compared to most others. However it is much better today than it was a decade or so ago. It is a case of an easy comparison – myeloma therapy today compared to 10 years ago.
That does not mean that most patients do well from an overall survival or quality of life standpoint. All you have to do is read forum posts from patients such as Tracy J, who are further along in their treatment, to see the long-term impact it can have.
So you are far from alone in your struggles. You are just more honest about it and willing to discuss it. I pretty much agree with all of the points you made in this thread.
Good vibes being sent your way that the Darzalex will be effective without all the side effects you have experienced with the other novel agents so far.
Mark
Sorry to hear of your continued struggles in finding a tolerable, effective therapy. I think your story is much more common than you think. If you notice the posts here in the forum, most of the patients that say they are doing well are newly diagnosed patients that are responding to their induction.
You wrote:
I think these new "exciting" novel agents must be helping a lot of people, but they sure haven't done much for me. There's a lot of hype put out by the drug companies and many doctors seem to buy into it uncritically. They can damage your body as they have done in my case.
Many myeloma specialists are paid to say what they say about myeloma therapies, which is why I tell everyone to read peer reviewed papers and draw your own conclusions, not just listen what your hear in a YouTube video or what you see in the conclusion section of a study.
With respect to the progress they are discussing, myeloma is still considered to be a poor outcome blood cancer when compared to most others. However it is much better today than it was a decade or so ago. It is a case of an easy comparison – myeloma therapy today compared to 10 years ago.
That does not mean that most patients do well from an overall survival or quality of life standpoint. All you have to do is read forum posts from patients such as Tracy J, who are further along in their treatment, to see the long-term impact it can have.
So you are far from alone in your struggles. You are just more honest about it and willing to discuss it. I pretty much agree with all of the points you made in this thread.
Good vibes being sent your way that the Darzalex will be effective without all the side effects you have experienced with the other novel agents so far.
Mark
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Mark11
Re: Bad reaction to Pomalyst & thoughts on further treatment
Funny you bring up this subject. I'very been thinking the same thing after 6 years. I've also tried all treatments, but my doctor just put me on Kyprolis (carfilzomib) as a last try. I swore to myself when I was diagnosed in 2011 I wouldn't live my life around IV infusions, but this is what it's coming too. Like you, I'm considering saying no more.
On my last visit, my doctor talked about clinical trials, and I'm considering saying no more chemo and trying a trial. At least I could make a contribution to help find a cure for this disease.
I'm so sick and tired of being sick and tired, and will make a decision next week. Bottom line, clinical trial, or let this disease take its course.
On my last visit, my doctor talked about clinical trials, and I'm considering saying no more chemo and trying a trial. At least I could make a contribution to help find a cure for this disease.
I'm so sick and tired of being sick and tired, and will make a decision next week. Bottom line, clinical trial, or let this disease take its course.
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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: Bad reaction to Pomalyst & thoughts on further treatment
I am 2 years into my diagnosis and treatment and frequently think about my quality of life. I'm not happy with it at all, but not yet ready to give up hope for future improvements. I understand and respect where you're coming from.
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Meglet - Name: MAM
- When were you/they diagnosed?: 11/2014
- Age at diagnosis: 52
Re: Bad reaction to Pomalyst & thoughts on further treatment
Hello MrPotatohead and Coop.
I completely understand the reasons for your current thinking about what to do, MrPotatohead. I also agree with you and Mark that there are lots of myeloma specialists who, for financial and related reasons, downplay the risks associated with many myeloma treatments, and overstate their potential efficacy.
The reality is that some patients do have a tough time with the first few Darzalex infusions, and the drug can have GI side effects and it will depress blood cell counts in the majority of patients taking it.
On the other hand, a lot of patients do respond to Darzalex, and some respond to it for very long times.
I'm just guessing, and I'm certainly no expert, but there probably is at least a 50 percent chance that you'll respond to a combination of Darzalex and dexamethasone, given that you haven't had much treatment with drugs like Revlimid and Pomalyst.
If you do respond to Darzalex, I think there is perhaps a 50 percent chance that you will be able to maintain your response for at least a year.
I also think you would find out quickly whether you can tolerate the Darzalex infusions, and whether you are responding to the drug.
If you do respond, the drug may reduce your tumor burden enough for your quality of life to improve, and for you to be able to add low doses of other therapies, such as Revlimid or Pomalyst.
Again, I'm not an expert, and I don't have any problem if others want to offer different estimates of the probabilities I just estimated. I just thought the probabilities might help you with your decision.
Coop - I hope you respond well to Kyprolis and that you don't experience any serious side effects. Please be on the look out for cardiac and pulmonary issues, and ask your doctor what sort of signs there might be for such problems.
If Kyprolis doesn't work out, the trial sounds like a good option, as does Darzalex. Have you tried Empliciti, Revlimid, and dexamethasone?
Good luck to both of you!
I completely understand the reasons for your current thinking about what to do, MrPotatohead. I also agree with you and Mark that there are lots of myeloma specialists who, for financial and related reasons, downplay the risks associated with many myeloma treatments, and overstate their potential efficacy.
The reality is that some patients do have a tough time with the first few Darzalex infusions, and the drug can have GI side effects and it will depress blood cell counts in the majority of patients taking it.
On the other hand, a lot of patients do respond to Darzalex, and some respond to it for very long times.
I'm just guessing, and I'm certainly no expert, but there probably is at least a 50 percent chance that you'll respond to a combination of Darzalex and dexamethasone, given that you haven't had much treatment with drugs like Revlimid and Pomalyst.
If you do respond to Darzalex, I think there is perhaps a 50 percent chance that you will be able to maintain your response for at least a year.
I also think you would find out quickly whether you can tolerate the Darzalex infusions, and whether you are responding to the drug.
If you do respond, the drug may reduce your tumor burden enough for your quality of life to improve, and for you to be able to add low doses of other therapies, such as Revlimid or Pomalyst.
Again, I'm not an expert, and I don't have any problem if others want to offer different estimates of the probabilities I just estimated. I just thought the probabilities might help you with your decision.
Coop - I hope you respond well to Kyprolis and that you don't experience any serious side effects. Please be on the look out for cardiac and pulmonary issues, and ask your doctor what sort of signs there might be for such problems.
If Kyprolis doesn't work out, the trial sounds like a good option, as does Darzalex. Have you tried Empliciti, Revlimid, and dexamethasone?
Good luck to both of you!
Re: Bad reaction to Pomalyst & thoughts on further treatment
Mark,
Thanks for the "good vibes". It's been a really long time since I have heard that phrase used in that way. I really appreciate your kind thoughts.
Yes, I am beginning to appreciate some "big picture" aspects of fighting myeloma. And I have noticed that many younger patients do report good results at the beginning of induction (bless them) as they dip their toes into the waters of their first novel agent experience. But then the cumulative side effects may begin to darken the scene, and of course for many there is no end to the sequence of drugs, or else a disappointing outcome. You may find yourself left high and dry, with diminishing options. And if you suffer from "aggressive disease", as I appear to do, you may also find yourself in that unpleasant situation before you know it.
Basing one's strategy on the hard results of scientific studies rather than the roundtable pontifications of the current crop of myeloma "thought leaders" is the soundest approach one can pursue, as you point out. A friend of mine from Germany is a scientist involved in drug development for heart disease and he is helping me develop (hopefully) enough depth to better understand the science and statistics behind some of the published studies.
I also understand that despite all of this, outcomes for many myeloma patients have improved markedly over the past ten years. There is every reason for hope in many cases.
I will hope for the best with Darzalex, and see what fate delivers. But I also won't go down this endless road forever. It's interesting and encouraging that I am not alone in feeling this way.
Thanks for the "good vibes". It's been a really long time since I have heard that phrase used in that way. I really appreciate your kind thoughts.
Yes, I am beginning to appreciate some "big picture" aspects of fighting myeloma. And I have noticed that many younger patients do report good results at the beginning of induction (bless them) as they dip their toes into the waters of their first novel agent experience. But then the cumulative side effects may begin to darken the scene, and of course for many there is no end to the sequence of drugs, or else a disappointing outcome. You may find yourself left high and dry, with diminishing options. And if you suffer from "aggressive disease", as I appear to do, you may also find yourself in that unpleasant situation before you know it.
Basing one's strategy on the hard results of scientific studies rather than the roundtable pontifications of the current crop of myeloma "thought leaders" is the soundest approach one can pursue, as you point out. A friend of mine from Germany is a scientist involved in drug development for heart disease and he is helping me develop (hopefully) enough depth to better understand the science and statistics behind some of the published studies.
I also understand that despite all of this, outcomes for many myeloma patients have improved markedly over the past ten years. There is every reason for hope in many cases.
I will hope for the best with Darzalex, and see what fate delivers. But I also won't go down this endless road forever. It's interesting and encouraging that I am not alone in feeling this way.
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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: Bad reaction to Pomalyst & thoughts on further treatment
Hi coop223,
I really understand where you are coming from. And I had not thought of clinical trials as a means to help others, if not myself. I admire you for weighing that option as part of your decision process.
For what it's worth, Kyprolis, along with Cytoxan and dex, gave me my best result, which lasted for almost a year and drove my light chains into CR territory. So I want to wish you the best of luck, and to thank you for sharing your thoughts.
I really understand where you are coming from. And I had not thought of clinical trials as a means to help others, if not myself. I admire you for weighing that option as part of your decision process.
For what it's worth, Kyprolis, along with Cytoxan and dex, gave me my best result, which lasted for almost a year and drove my light chains into CR territory. So I want to wish you the best of luck, and to thank you for sharing your thoughts.
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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: Bad reaction to Pomalyst & thoughts on further treatment
Meglet,
You are a lot younger than me, which gives you a better fighting chance, I believe. This can be a tough battle, but many people manage to gain the upper hand for quite a while. That's what I wish for you, my friend.
You are a lot younger than me, which gives you a better fighting chance, I believe. This can be a tough battle, but many people manage to gain the upper hand for quite a while. That's what I wish for you, my friend.
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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: Bad reaction to Pomalyst & thoughts on further treatment
TerryH,
Perhaps you are not an expert, but your expertise "trumps" mine.
I like your odds. I'll take them.
Thanks very much for the info and encouragement!
Perhaps you are not an expert, but your expertise "trumps" mine.
I like your odds. I'll take them.
Thanks very much for the info and encouragement!
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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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