I will try to keep this succinct.
My wife (59) was diagnosed with aggressive multiple myeloma in late November of last year after her spleen ruptured. Due to the blood loss associated with that, she has been on dialysis ever since, though with function improving enough to have been moved from 3 times a week to 2.
We went through the initial Velcade and dexamethasone treatment (for the multiple myeloma) and then had an autologous stem cell transplant in June (with melphalan as the high-dose chemotherapy).
She was doing quite good after that, all things considered, and then suddenly began to develop soft-tissue tumours. She was put on Revlimid and dexamethasone, and the tumours disappeared. Her side effects were mostly cramping.
The light chain level started to rise about 6 weeks ago, and there was a slight return of 2 small soft-tissue tumours.
They discontinued the Revlimid and moved her onto Kyprolis (carfilzomib) with dexamethasone. She just finished the first round and is in the resting week as I write.
Her soft-tissue tumours have returned worse than ever. They are appearing everywhere. And every time I examine her, I can feel more coming. The biggest ones are becoming quite big and turning purple. And she suddenly has severe (7 out of 10) upper back pain; adjacent to one of the largest tumours.
To say I'm freaked out would be an understatement.
We meet with her oncologist tomorrow afternoon.
I will be asking if combining the Revlimid with the Kyprolis is worth a try. I will also mention Pomalyst. And clinical trials.
But my suggestions / questions / comments are all based on my self-study crash course (something I'm sure many here are familiar with). So I only know what I know, and have no idea what I don't know, except I'm sure the latter far exceeds the former.
So I'm asking the community for feedback, suggestions, and / or comments. And thank you in-advance.
Forums
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Michael in Montreal - Name: Michael in Montreal
- Who do you know with myeloma?: My wife
- When were you/they diagnosed?: November 2016
- Age at diagnosis: 57
Re: Tumors developing during Kyprolis treatment: what next?
Hello Michael, and thanks for posting to the forum.
I am sorry to hear that your wife is having such a terrible time with the myeloma, and I hope that the next round of treatments helps her. It seems that you still have not tried Pomalyst, and have just started with Kyprolis, so hopefully one of those drugs could help her. It sounds like a good idea to look into clinical trials also, since I think that unless you have private drug insurance, a monoclonal antibody drug such as Darzalex would not be offered, i.e. not on the public health care system. There are other drugs also available on clinical trials of course. I also live in Canada and try to keep informed as to what is available here.
Wishing your wife all the best in getting better, and hopefully the oncologist will have some good suggestions tomorrow.
I am sorry to hear that your wife is having such a terrible time with the myeloma, and I hope that the next round of treatments helps her. It seems that you still have not tried Pomalyst, and have just started with Kyprolis, so hopefully one of those drugs could help her. It sounds like a good idea to look into clinical trials also, since I think that unless you have private drug insurance, a monoclonal antibody drug such as Darzalex would not be offered, i.e. not on the public health care system. There are other drugs also available on clinical trials of course. I also live in Canada and try to keep informed as to what is available here.
Wishing your wife all the best in getting better, and hopefully the oncologist will have some good suggestions tomorrow.
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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: Tumors developing during Kyprolis treatment: what next?
Hello Michael,
I am in a similar situation as your wife. This post is quite long, but it will give you an idea of what I have been through recently.
I was originally diagnosed with standard risk lambda light chain multiple myeloma with virtually no M-spike. Last August I developed multiple extramedullary plasmacytomas as they are called. This was described to me as being where the myeloma moves out of the bone and into the soft tissue of the body. Initially they were thought to be subcutaneous benign tumors, in November it was determined that they were not, that they were actually soft tissue myeloma tumors. Some of my tumors were the size of golf balls with a purple coloration and something similar to varicose veins. If my research is correct, this happens in approximately 1% of multiple myeloma patients, and it's not considered good for prognosis.
In December I was put on Darzalex, Pomalyst, and dexamethasone; this regimen had no effect, and by Christmas 2016 I was in the hospital because one of the tumors blocked off my main bile duct from my liver, it was on the head of my pancreas. In January my myeloma specialist had no good options and recommended no further treatment. To me this was not an option.
I consulted with another doctor and was given an old-school treatment, VD-PACE (Velcade, dexamethasone, cisplatin, doxorubicin, cyclophosphamide, and etoposide) in February of 2017, and within 10 days, all of the tumors had dissolved. This was followed by a stem cell transplant in April, which did not have the desired outcome, as I did not achieve a sustained remission. The myeloma continued to advance as light chains rose and both Revlimid and Ninlaro as maintenance treatments were ineffective.
By October, I developed pain in my thigh, which was found to be a tumor in the bone that had eaten through and was at risk for fracture. On October 18, a rod was put in my femur, and on the 19, another round of VD-PACE to kill the tumor. I am currently recovering from the chemo and am scheduled for another round of the VD-PACE on November 28.
I am fighting this with all I have! The good news is the extramedullary plasmacytomas in the soft tissue have been resolved. Now we just have to get the myeloma light chains to cooperate.
I am in a similar situation as your wife. This post is quite long, but it will give you an idea of what I have been through recently.
I was originally diagnosed with standard risk lambda light chain multiple myeloma with virtually no M-spike. Last August I developed multiple extramedullary plasmacytomas as they are called. This was described to me as being where the myeloma moves out of the bone and into the soft tissue of the body. Initially they were thought to be subcutaneous benign tumors, in November it was determined that they were not, that they were actually soft tissue myeloma tumors. Some of my tumors were the size of golf balls with a purple coloration and something similar to varicose veins. If my research is correct, this happens in approximately 1% of multiple myeloma patients, and it's not considered good for prognosis.
In December I was put on Darzalex, Pomalyst, and dexamethasone; this regimen had no effect, and by Christmas 2016 I was in the hospital because one of the tumors blocked off my main bile duct from my liver, it was on the head of my pancreas. In January my myeloma specialist had no good options and recommended no further treatment. To me this was not an option.
I consulted with another doctor and was given an old-school treatment, VD-PACE (Velcade, dexamethasone, cisplatin, doxorubicin, cyclophosphamide, and etoposide) in February of 2017, and within 10 days, all of the tumors had dissolved. This was followed by a stem cell transplant in April, which did not have the desired outcome, as I did not achieve a sustained remission. The myeloma continued to advance as light chains rose and both Revlimid and Ninlaro as maintenance treatments were ineffective.
By October, I developed pain in my thigh, which was found to be a tumor in the bone that had eaten through and was at risk for fracture. On October 18, a rod was put in my femur, and on the 19, another round of VD-PACE to kill the tumor. I am currently recovering from the chemo and am scheduled for another round of the VD-PACE on November 28.
I am fighting this with all I have! The good news is the extramedullary plasmacytomas in the soft tissue have been resolved. Now we just have to get the myeloma light chains to cooperate.
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Conundrum One - Name: Donna
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 1/21/15
- Age at diagnosis: 55
Re: Tumors developing during Kyprolis treatment: what next?
Thank you for that very helpful reply Nancy.
The meeting with the oncologist turned out to be filled with rather grim, but not completely hopeless, news.
We apparently have just one avenue left: Procytox (cyclophosphamide).
Clinical trials are not an option for us, apparently, due to her kidney damage.
I plan to take her to another specialist to get a second opinion. It cannot hurt.
For now, it's a world of shock. It's the only word I can think to use.
But again, thank you so much for your reply.
The meeting with the oncologist turned out to be filled with rather grim, but not completely hopeless, news.
We apparently have just one avenue left: Procytox (cyclophosphamide).
Clinical trials are not an option for us, apparently, due to her kidney damage.
I plan to take her to another specialist to get a second opinion. It cannot hurt.
For now, it's a world of shock. It's the only word I can think to use.
But again, thank you so much for your reply.
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Michael in Montreal - Name: Michael in Montreal
- Who do you know with myeloma?: My wife
- When were you/they diagnosed?: November 2016
- Age at diagnosis: 57
Re: Tumors developing during Kyprolis treatment: what next?
Hello Donna:
Thank you for that very helpful reply. Your situation sounds very similar to ours, and the information you provided is quite interesting.
I am going to ask our oncologist about the VD-PACE protocol you mentioned.
Also, the fact that you discovered this by going to a second specialist has been noted, and I am now researching how to do the same here. It sounds like this specialist (and you) thought "outside the box," and it worked. We will do the same.
Your story and words have been very encouraging for me and rekindled my "fight this!" mindset.
Thank you so much, and warmest best wishes and good luck to you.
Michael
Thank you for that very helpful reply. Your situation sounds very similar to ours, and the information you provided is quite interesting.
I am going to ask our oncologist about the VD-PACE protocol you mentioned.
Also, the fact that you discovered this by going to a second specialist has been noted, and I am now researching how to do the same here. It sounds like this specialist (and you) thought "outside the box," and it worked. We will do the same.
Your story and words have been very encouraging for me and rekindled my "fight this!" mindset.
Thank you so much, and warmest best wishes and good luck to you.
Michael
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Michael in Montreal - Name: Michael in Montreal
- Who do you know with myeloma?: My wife
- When were you/they diagnosed?: November 2016
- Age at diagnosis: 57
Re: Tumors developing during Kyprolis treatment: what next?
Bonjour Michael,
I agree that it couldn't hurt to get a second opinion.
Good luck!
I agree that it couldn't hurt to get a second opinion.
Good luck!
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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: Tumors developing during Kyprolis treatment: what next?
Hello Michael,
Sorry to hear about what you are going through.
We are facing a similar situation. My mother, 53 years old and diagnosed in 2015, has an aggressive form of the disease. She has gone through various treatments, including a stem cell transplant. Her disease keeps relapsing.
An extramedullary plasmacytoma was found in her right sinus area in May 2017. She went through radiation, after which she was given 3 rounds of carfilzomib (Kyprolis) with Pomalyst and dexamethasone. She seemed to be having a good response to the regimen. She was scheduled for another round of the same regimen, but she started having extreme pain in her abdomen area. We found another plasmacytoma around her abdomen area. Her pelvic bones have also been completely eaten away. She has gone through radiation for it again. The pain in her pelvis area is unimaginable (8/10). She’s on complete bed rest and unable to walk. The doctor has told us to be prepared that we might lose this battle. This is because the plasmacytomas are now cropping up everywhere (there seems to be a new big one in her left sinus area). Our oncologist is continuing with the Kyprolis, Pomalyst, and dex regimen, now hoping that it will make the tumors go away on their own, as it’s impossible to give radiation everywhere. It is quite shocking to us that new plasmacytomas would develop this fast even while being on treatment.
We are in hope that this will work, but she is in a lot of pain and it’s very tough to see someone you love in such a condition. Considering the fact that every treatment we have tried has given us a good but not prolonged response, it’s hard to stay positive.
We live in India and have limited to no access to newer drugs. It makes this situation even more frustrating. Warm wishes to you, Michael. I hope new treatments work for your wife.
Sorry to hear about what you are going through.
We are facing a similar situation. My mother, 53 years old and diagnosed in 2015, has an aggressive form of the disease. She has gone through various treatments, including a stem cell transplant. Her disease keeps relapsing.
An extramedullary plasmacytoma was found in her right sinus area in May 2017. She went through radiation, after which she was given 3 rounds of carfilzomib (Kyprolis) with Pomalyst and dexamethasone. She seemed to be having a good response to the regimen. She was scheduled for another round of the same regimen, but she started having extreme pain in her abdomen area. We found another plasmacytoma around her abdomen area. Her pelvic bones have also been completely eaten away. She has gone through radiation for it again. The pain in her pelvis area is unimaginable (8/10). She’s on complete bed rest and unable to walk. The doctor has told us to be prepared that we might lose this battle. This is because the plasmacytomas are now cropping up everywhere (there seems to be a new big one in her left sinus area). Our oncologist is continuing with the Kyprolis, Pomalyst, and dex regimen, now hoping that it will make the tumors go away on their own, as it’s impossible to give radiation everywhere. It is quite shocking to us that new plasmacytomas would develop this fast even while being on treatment.
We are in hope that this will work, but she is in a lot of pain and it’s very tough to see someone you love in such a condition. Considering the fact that every treatment we have tried has given us a good but not prolonged response, it’s hard to stay positive.
We live in India and have limited to no access to newer drugs. It makes this situation even more frustrating. Warm wishes to you, Michael. I hope new treatments work for your wife.
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UrviL - Name: Urvi Lakhani
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: Sept 2015
- Age at diagnosis: 51
Re: Tumors developing during Kyprolis treatment: what next?
I am beyond sad to report that my wife lost her battle, and just 14 months after diagnosis. She passed away early Saturday morning, December 9, 2017.
The extramedullary tumours could not be controlled, and they consumed her quite fast at the end.
She was just 59.
To all who sought to help, thank you.
And to all still fighting, good luck and best wishes.
The extramedullary tumours could not be controlled, and they consumed her quite fast at the end.
She was just 59.
To all who sought to help, thank you.
And to all still fighting, good luck and best wishes.
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Michael in Montreal - Name: Michael in Montreal
- Who do you know with myeloma?: My wife
- When were you/they diagnosed?: November 2016
- Age at diagnosis: 57
Re: Tumors developing during Kyprolis treatment: what next?
Dear Michael,
My thoughts go out to you during this difficult time. I had posted above about my mother who was facing a similar situation to your wife. My mother passed away last Wednesday. Wishing you all the strength that you need.
Regards
Urvi
My thoughts go out to you during this difficult time. I had posted above about my mother who was facing a similar situation to your wife. My mother passed away last Wednesday. Wishing you all the strength that you need.
Regards
Urvi
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UrviL - Name: Urvi Lakhani
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: Sept 2015
- Age at diagnosis: 51
Re: Tumors developing during Kyprolis treatment: what next?
Michael, I am sorry about your wife's passing also. You tried everything you could to help her, but it seems nothing worked. I hope that the memories you have of good times you shared together can help you in this time of loss.
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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
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