After my eight month response to Cytoxan (cyclophosphamide) and Kyprolis ran out of steam and my oncologist finally acknowledged that I had relapsed, he kept me on Kyprolis and added Pomalyst (pomalidomide, Imnovid).
Almost immediately I began to experience excruciating stomach cramps and nonstop diarrhea (Imodium had no effect on the diarrhea). After almost three weeks of this, averaging once every two days, I was taken off the Pomalyst, and the cramps and diarrhea stopped. However, my light chains continue to rise.
Since I was diagnosed in March, 2015, I have been on Revlimid, Velcade, Kyprolis, and now Pomalyst. I had a very brief response to Revlimid, but wound up in the hospital and almost died. Initially, it was thought that I had double pneumonia, but exhaustive tests failed to identify any pathogen, and so it was ultimately attributed to the Revlimid itself.
Next we tried subcutaneous Velcade, which elicited no response, and then Kyprolis, which did work for almost eight months, and, most recently the Pomalyst.
My oncologist next wants to try Darzalex.
My only cytogenetic / FISH anomalies are chromosome 13 deletion and translocation 11:14. I have kappa light chain myeloma, and had four vertebral fractures and "thousands"of lytic lesions when I was at last correctly diagnosed four years after my symptoms began. I have been turned down for an autologous stem cell transplant twice at a major center.
The treatments have done as much damage to me as the myeloma -- my kidneys are damaged, and my stomach and bowels hurt frequently. My white and red blood counts never returned to normal even during the brief time (4 months) I was in complete response while on Kyprolis, and the Kyprolis has given me shortness of breath, and crushing fatigue.
I am ambivalent about the Darzalex. It has low single agent efficacy, although my oncologist wants to add it to the Kyprolis. Darzalex has plenty of dangerous side effects.
Frankly, I have had enough of this multiple myeloma. I am thinking of stopping all treatments and seeing if I can heal enough to have a modicum of quality time before I go.
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.
I wonder if anyone else feels the same way I do?
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
I was thinking along the same line just today. Are all these drugs really giving us much? Are we better to let the disease play out and just get pain killers?
After a visit to my specialist on Monday, I too have reason to question whether or not to seek further treatment. My M-spike is rising and whilst I am currently on nothing, it's only a matter of when.
I knew this day would come. But now it is here, I am not as overwhelmed as I was at diagnosis. I have a lot more information about what will be, and I don't know if I want to go through all these different treatments to gain what – a week, month, or year?
I remembered all that I had been through (a drop in the ocean compared to some) and remembered thinking to myself a few days after I got home from my stem cell transplant that I just wanted to die. I don't want to feel like that again. Admittedly, I haven't felt that way since, but at the time it was a genuine feeling.
I take my hat off to all of those who keep getting treatment after treatment. I'm not so sure I can.
I completely understand where you are coming from, MrPotatohead.
Whatever way you go, it's your body, your choice, your life to live what is left of it your way.
After a visit to my specialist on Monday, I too have reason to question whether or not to seek further treatment. My M-spike is rising and whilst I am currently on nothing, it's only a matter of when.
I knew this day would come. But now it is here, I am not as overwhelmed as I was at diagnosis. I have a lot more information about what will be, and I don't know if I want to go through all these different treatments to gain what – a week, month, or year?
I remembered all that I had been through (a drop in the ocean compared to some) and remembered thinking to myself a few days after I got home from my stem cell transplant that I just wanted to die. I don't want to feel like that again. Admittedly, I haven't felt that way since, but at the time it was a genuine feeling.
I take my hat off to all of those who keep getting treatment after treatment. I'm not so sure I can.
I completely understand where you are coming from, MrPotatohead.
Whatever way you go, it's your body, your choice, your life to live what is left of it your way.
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Bad reaction to Pomalyst & thoughts on further treatment
I am so sorry to hear that the drugs are no longer working and have caused you much side effect, pain, and anguish. You absolutely have the choice to say no to any further treatment and let nature take its course. I understand why you would make that choice. But then again, you never know unless you try. If you have it in you, I encourage you to try the Darzalex and see if you can tolerate it, see if it brings a response. It is a different drug and you just never know.
God bless. Keeping you in prayer.
God bless. Keeping you in prayer.
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Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
Re: Bad reaction to Pomalyst & thoughts on further treatment
MrPotatohead,
I just wanted to say each time you have posted and you are close to giving up it has brought me to tears. Your pain is our pain and I truly feel your hurt. You have already gone through so much and I know things are tough, your contribution to this site is and hopefully will continue to be an inspiration. If you go forward with treatment, it just may work as the Kyprolis did, you never know unless you try.
You are in my thoughts and prayers.
Rhonda
I just wanted to say each time you have posted and you are close to giving up it has brought me to tears. Your pain is our pain and I truly feel your hurt. You have already gone through so much and I know things are tough, your contribution to this site is and hopefully will continue to be an inspiration. If you go forward with treatment, it just may work as the Kyprolis did, you never know unless you try.
You are in my thoughts and prayers.
Rhonda
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Rhonda - Who do you know with myeloma?: myself
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 54
Re: Bad reaction to Pomalyst & thoughts on further treatment
Hello MrPotatohead,
You may be thinking of Empliciti when you say that Darzalex does not have much single-agent activity. Darzalex does have single-agent activity, and you probably will take it together with dex, which will make it more likely to work.
Also, you are more likely to respond to Darzalex and dex than the patients in the trials where most patients were "heavily pretreated". This is because you haven't really had much exposure to the entire imid class of therapies, due to the side effects you've had when you've tried them.
I think there's a good chance you'll respond to Darzalex and dex. Once you've responded to it, you could consider adding low doses of Revlimid or Pomalyst, to see if you can tolerate the drugs. You could even try thalidomide.
Did you try to address the GI side effects you had from Pomalyst with the approach discussed in this article:
"British Researchers Document Potential Solution For Revlimid Gastrointestinal Side Effect," The Myeloma Beacon, Oct 14, 2014
If not, you may want to keep it in mind for the future.
There are other options – for example, Velcade and Venclexta and dex may work for you.
As others have said, it is your decision about what you do, but please do not think that the options open to you will not work.
Good luck!
You may be thinking of Empliciti when you say that Darzalex does not have much single-agent activity. Darzalex does have single-agent activity, and you probably will take it together with dex, which will make it more likely to work.
Also, you are more likely to respond to Darzalex and dex than the patients in the trials where most patients were "heavily pretreated". This is because you haven't really had much exposure to the entire imid class of therapies, due to the side effects you've had when you've tried them.
I think there's a good chance you'll respond to Darzalex and dex. Once you've responded to it, you could consider adding low doses of Revlimid or Pomalyst, to see if you can tolerate the drugs. You could even try thalidomide.
Did you try to address the GI side effects you had from Pomalyst with the approach discussed in this article:
"British Researchers Document Potential Solution For Revlimid Gastrointestinal Side Effect," The Myeloma Beacon, Oct 14, 2014
If not, you may want to keep it in mind for the future.
There are other options – for example, Velcade and Venclexta and dex may work for you.
As others have said, it is your decision about what you do, but please do not think that the options open to you will not work.
Good luck!
Re: Bad reaction to Pomalyst & thoughts on further treatment
My Dad who is 88 has multiple myeloma and he has been on all of those treatments that you detailed. A few months back they put him on Darzalex, and he did not experience any side effects. The initial treatment takes about 12 hours in a hospital. After that, he goes every other week for IV treatment and it seemed to be working. However, after 3 months his IgA levels increased to 3500. I know everyone is different, but I thought I would share my Dad's experience.
Re: Bad reaction to Pomalyst & thoughts on further treatment
Hi Mr Potatohead,
Sorry to hear your news.
I really feel for you, especially as I've gotten to know your history over our chats in the past as well as your helping me with advice.
I'm just hoping you will pick yourself up from this and keep at it. You have been given some great advice and at least you still know that you do still have options. I totally understand it's your life and body and that's a decision you have to make. I've got my fingers crossed that you will get over this dark time and get through it. Keep us updated.
Thinking of you and all the best of luck if you decide to go for the new treatment plan.
Regards,
Dean
Sorry to hear your news.
I really feel for you, especially as I've gotten to know your history over our chats in the past as well as your helping me with advice.
I'm just hoping you will pick yourself up from this and keep at it. You have been given some great advice and at least you still know that you do still have options. I totally understand it's your life and body and that's a decision you have to make. I've got my fingers crossed that you will get over this dark time and get through it. Keep us updated.
Thinking of you and all the best of luck if you decide to go for the new treatment plan.
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: Bad reaction to Pomalyst & thoughts on further treatment
I would like to thank everyone for sharing their thoughts with me. Truly appreciated.
vicstir,
I think I have simply reached a "saturation point", if you will, coping with the roller-coaster ride of hope followed by disappointment. Plus, the fact that the drugs really contribute their own burdens and you wind up frequently feeling worse rather than better.
Melpen,
I may go ahead with the Darzalex. It's hard to say "enough." One keeps hoping that this will be "it", the drug that finally makes you feel as if you have retrieved some worthwhile measure of your previous health. So far that has largely eluded me. Thank you for the encouragement.
Rhonda,
Thank you indeed for your very kind words,
TerryH,
I was thinking of some study I read that stated that Darzalex elicited a response in some 30% of those taking it as a single agent (together with dexamethasone). I understand the response rate is improved once you combine it with Velcade or Kyprolis.
Thanks very much for the reference on diarrhea; No, I have not tried the described strategy while on Pomalyst.
vvicin01,
I hope your Dad's condition improves. These drugs do help many people.
Hi Dean,
I think one can reach a point where the reality of what you are able to achieve in being treated for multiple myeloma falls far short of one's expectations, especially after being regaled with the optimistic assessments of clinicians. Maintaining a realistic outlook while not being tempted to throw in the towel is a difficult feat of balance, and after a while it just does not quite seem worthy of the effort.
A number of people have pointed out that multiple myeloma is really multiple diseases, not just one, and those afflicted with more virulent strains still suffer a worse course, despite all the very real progress that has been made in combating milder cases.
I do think that much more basic research is needed to uncover what gives rise to myeloma, as well as to better understand how drugs actually work to fight it. Many descriptions of their mechanism of action acknowledge that the understanding of how they help is incomplete.
In addition, there needs to be better methods to identify the disease early, before it has wreaked its havoc on the body. In my case, four years went by before I was properly diagnosed, allowing the myeloma to ravage my bones, leaving me with intractable pain.
vicstir,
I think I have simply reached a "saturation point", if you will, coping with the roller-coaster ride of hope followed by disappointment. Plus, the fact that the drugs really contribute their own burdens and you wind up frequently feeling worse rather than better.
Melpen,
I may go ahead with the Darzalex. It's hard to say "enough." One keeps hoping that this will be "it", the drug that finally makes you feel as if you have retrieved some worthwhile measure of your previous health. So far that has largely eluded me. Thank you for the encouragement.
Rhonda,
Thank you indeed for your very kind words,
TerryH,
I was thinking of some study I read that stated that Darzalex elicited a response in some 30% of those taking it as a single agent (together with dexamethasone). I understand the response rate is improved once you combine it with Velcade or Kyprolis.
Thanks very much for the reference on diarrhea; No, I have not tried the described strategy while on Pomalyst.
vvicin01,
I hope your Dad's condition improves. These drugs do help many people.
Hi Dean,
I think one can reach a point where the reality of what you are able to achieve in being treated for multiple myeloma falls far short of one's expectations, especially after being regaled with the optimistic assessments of clinicians. Maintaining a realistic outlook while not being tempted to throw in the towel is a difficult feat of balance, and after a while it just does not quite seem worthy of the effort.
A number of people have pointed out that multiple myeloma is really multiple diseases, not just one, and those afflicted with more virulent strains still suffer a worse course, despite all the very real progress that has been made in combating milder cases.
I do think that much more basic research is needed to uncover what gives rise to myeloma, as well as to better understand how drugs actually work to fight it. Many descriptions of their mechanism of action acknowledge that the understanding of how they help is incomplete.
In addition, there needs to be better methods to identify the disease early, before it has wreaked its havoc on the body. In my case, four years went by before I was properly diagnosed, allowing the myeloma to ravage my bones, leaving me with intractable pain.
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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,
I echo the concerns shown by the others posting here! Do you have a trusted family member, friend, or someone at a church or cancer centre who you could talk to about this? Sometimes it is reassuring to chat with people in person too.
Perhaps if the single-agent Darzalex were taken with dexamethasone, the dex might temper the aches and pains that you have. I have also heard and read that the initial reactions to Darzalex could be difficult but, after that, could be more tolerable. Overall with Darzalex, however, I think that you would be receiving a drug that is on the cutting edge of research, and may help you very much.
Best wishes!
I echo the concerns shown by the others posting here! Do you have a trusted family member, friend, or someone at a church or cancer centre who you could talk to about this? Sometimes it is reassuring to chat with people in person too.
Perhaps if the single-agent Darzalex were taken with dexamethasone, the dex might temper the aches and pains that you have. I have also heard and read that the initial reactions to Darzalex could be difficult but, after that, could be more tolerable. Overall with Darzalex, however, I think that you would be receiving a drug that is on the cutting edge of research, and may help you very much.
Best wishes!
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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: Bad reaction to Pomalyst & thoughts on further treatment
My husband had a good response to Darzalex (with Pomalyst) for about 6 months. I will say that of all the treatments he was on, Darzalex was the easiest in regard to side effects. He even said that some times he wondered if they were just giving him water.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
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