Hi All- I have received bad news. It looks like I have a very aggressive form of myeloma. I was previously on Rev/Velcade in November, showed some signs of improvement but response was not as deep as the doctors were expecting. I was initially scheduled to receive a transplant in March but was put on hold. In order to speed up the process and get me ready for transplant in April I was given a four day cycle of VDT-PACE. Unfortunately I had no response to the VDT-PACE. They started my back on Thalidomide in May as in 2007 when I was first diagnosed I had positive response- complete remission for 3 years! We had an initial drop and again the stem cell transplant was put on the table for the near future. Unfortunately recent tests have shown the numbers have spiked uncontrollably. The doctors and transplant team are stumped. Nothing seems to be working. They are considering putting me on carfilzomib [Kyprolis], which is currently in clinical trial. The past 8 months has been a battle and emotional roller coaster. It seems like I am running out of options.
Has anyone here been on Carfilzomib? If so, could you please share your experience. What other options would I have?
-Sunshine
Forums
10 posts
• Page 1 of 1
Re: Carfilzomib- Clinical Trial
Just found out the Carfilzomib trial is no longer available. What other options would I have? At this point my doctor is also stumped.
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sunshine15 - When were you/they diagnosed?: 2007
- Age at diagnosis: 49
Re: Carfilzomib- Clinical Trial
Hello Sunshine15,
I am very sorry to hear that your myeloma is becoming more of a challenge to manage.
Can you go into a bit more detail about your treatment history so far? You mention below that you were treated initially with thalidomide, and that you've tried the VDT-PACE regimen recently. However, I recall from earlier posts that you also were on Revlimid at some point? Is that correct?
Just a list of dates and what you were taking during those dates will be enough, I think.
Also, have you had any recent FISH testing or anything else that would tell us whether you having any genetic mutations that might be relevant to a treatment recommendation? If so, providing some of that information would be useful as well.
I think that many of the options that you're going to have are drugs that are still under development as potential myeloma treatments. For an overview of many of those drugs, see the last section (Treatments Under Development) of this article in our IMW 2011 coverage:
https://myelomabeacon.org/news/2011/05/09/imw-2011-multiple-myeloma-update-day-three-part-1/
Also, there are two articles from not too long ago that give further insights into some of the treatments under development:
https://myelomabeacon.org/news/2011/04/15/promising-new-drugs-for-multiple-myeloma-will-the-future-come-soon-enough-by-dr-vincent-rajkumar/
and the first half or so of this article:
https://myelomabeacon.org/news/2011/02/28/thought-leader-perspective-dr-kenneth-anderson-on-the-future-of-multiple-myeloma-treatment/
I hope that helps for now.
All the best,
Boris.
I am very sorry to hear that your myeloma is becoming more of a challenge to manage.
Can you go into a bit more detail about your treatment history so far? You mention below that you were treated initially with thalidomide, and that you've tried the VDT-PACE regimen recently. However, I recall from earlier posts that you also were on Revlimid at some point? Is that correct?
Just a list of dates and what you were taking during those dates will be enough, I think.
Also, have you had any recent FISH testing or anything else that would tell us whether you having any genetic mutations that might be relevant to a treatment recommendation? If so, providing some of that information would be useful as well.
I think that many of the options that you're going to have are drugs that are still under development as potential myeloma treatments. For an overview of many of those drugs, see the last section (Treatments Under Development) of this article in our IMW 2011 coverage:
https://myelomabeacon.org/news/2011/05/09/imw-2011-multiple-myeloma-update-day-three-part-1/
Also, there are two articles from not too long ago that give further insights into some of the treatments under development:
https://myelomabeacon.org/news/2011/04/15/promising-new-drugs-for-multiple-myeloma-will-the-future-come-soon-enough-by-dr-vincent-rajkumar/
and the first half or so of this article:
https://myelomabeacon.org/news/2011/02/28/thought-leader-perspective-dr-kenneth-anderson-on-the-future-of-multiple-myeloma-treatment/
I hope that helps for now.
All the best,
Boris.
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Boris Simkovich - Name: Boris Simkovich
Founder
The Myeloma Beacon
Re: Carfilzomib- Clinical Trial
Boris- thank you so much for your response. This has been an extremely difficult and disappointing time for me and my family.
April 2007- Initially diagnosed with IgG Kappa Multiple Myeloma. Treatment consisted of 8 months Thalidomide 150 mg and 40mg Dex. I had a great response and went into remission for 3 years.
November 2010- In July my IgG levels started to creep up. In November 2010 I was referred to the transplant department. My pre-transplant regimen consisted of Revmilid/Velcade/Dex. I stayed on this regimen through March 2011.
March 2011- Transplant was scheduled for March. Although I had moderate response to the RVD, after sometime the myeloma began to creep up and the transplant was pushed to May.
April 2011- I was given VDT-PACE in preparation for a stem cell transplant 5/16th. Also, with the help of neupogen shots I was able to collect enough stem cells for the transplant.
May 2011- Test results jumped. M-Spike increased from 1.1 in March to 1.6 and IgG from 1700 to 2650. Transplant was taken off the table. I was put on 150mg Thalidomide/12mg Dex every other day. I landed myself in the hospital with increased sugars due to the steroids. I stopped treatment of the Thalidomide/Dex for 9 days and started taking insulin. I was put back on the Thalidomide at a decreased dosage of 100mg and started taking Prednisone 40 mg. In May I had a slight drop in both M-Spike & IgG.
June 2011- Once again I visited the hospital with elevated calcium 11.2. I stopped the Thalidomide for 5 days. M-Spike dropped to an all time low of .8 and IgG 1250. Again the transplant was put back on the table. Unfortunately six days later I went to follow-up with the doctor and my M-Spike jumped back to 1.2 and IgG 2010.
July 2011- As of this morning my IgG has increased to 2470. We are still waiting on results for the M-Spike. The dr believes the M-Spike has either stayed at 1.2 or increased. All other labs are normal (calcium is doing great at 9.5).
The doctor has recommended we do the transplant to try to control the myeloma. I do not want to do the transplant with the myeloma elevated and progressing. I would be putting my body through so much for only a max of 6 months remission before having to start on the chemo again. The other option he gave me was to go on a clinical trial. They will be testing me again in 2 weeks after slightly changing the regimen. I will now be taking Thalidomide 100mg, Prednisone 40mg 2x/week and adding Clarithromycin 500 mg 2x/day.
Boris- I am not aware of a FISH testing. Perhaps I should as the doctor to run this test. I am also considering obtaining a second opinion, as I need to think of a plan B. My body has been through so much the past 8 months I do not know how much more I can take. Does anyone have any suggestions of facilities in the NY/NJ area that come highly recommend?
Thank you so much.
April 2007- Initially diagnosed with IgG Kappa Multiple Myeloma. Treatment consisted of 8 months Thalidomide 150 mg and 40mg Dex. I had a great response and went into remission for 3 years.
November 2010- In July my IgG levels started to creep up. In November 2010 I was referred to the transplant department. My pre-transplant regimen consisted of Revmilid/Velcade/Dex. I stayed on this regimen through March 2011.
March 2011- Transplant was scheduled for March. Although I had moderate response to the RVD, after sometime the myeloma began to creep up and the transplant was pushed to May.
April 2011- I was given VDT-PACE in preparation for a stem cell transplant 5/16th. Also, with the help of neupogen shots I was able to collect enough stem cells for the transplant.
May 2011- Test results jumped. M-Spike increased from 1.1 in March to 1.6 and IgG from 1700 to 2650. Transplant was taken off the table. I was put on 150mg Thalidomide/12mg Dex every other day. I landed myself in the hospital with increased sugars due to the steroids. I stopped treatment of the Thalidomide/Dex for 9 days and started taking insulin. I was put back on the Thalidomide at a decreased dosage of 100mg and started taking Prednisone 40 mg. In May I had a slight drop in both M-Spike & IgG.
June 2011- Once again I visited the hospital with elevated calcium 11.2. I stopped the Thalidomide for 5 days. M-Spike dropped to an all time low of .8 and IgG 1250. Again the transplant was put back on the table. Unfortunately six days later I went to follow-up with the doctor and my M-Spike jumped back to 1.2 and IgG 2010.
July 2011- As of this morning my IgG has increased to 2470. We are still waiting on results for the M-Spike. The dr believes the M-Spike has either stayed at 1.2 or increased. All other labs are normal (calcium is doing great at 9.5).
The doctor has recommended we do the transplant to try to control the myeloma. I do not want to do the transplant with the myeloma elevated and progressing. I would be putting my body through so much for only a max of 6 months remission before having to start on the chemo again. The other option he gave me was to go on a clinical trial. They will be testing me again in 2 weeks after slightly changing the regimen. I will now be taking Thalidomide 100mg, Prednisone 40mg 2x/week and adding Clarithromycin 500 mg 2x/day.
Boris- I am not aware of a FISH testing. Perhaps I should as the doctor to run this test. I am also considering obtaining a second opinion, as I need to think of a plan B. My body has been through so much the past 8 months I do not know how much more I can take. Does anyone have any suggestions of facilities in the NY/NJ area that come highly recommend?
Thank you so much.
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sunshine15 - When were you/they diagnosed?: 2007
- Age at diagnosis: 49
Re: Carfilzomib- Clinical Trial
Hello again Sunshine15,
That's a really helpful summary of your treatment history. Thank you.
I understand completely how this must be a difficult time for you and your family. All of us here on the forum are hoping you can find a good solution to the challenges you're facing, so that you and your family can rest easier.
If you would, could you go through some of your test results to make sure you don't have any information about any myeloma-related genetic mutations that you might have. The results may be listed in the results of "bone marrow cultures." Look for things that look like "11q13" or "del(14)" or "t(4;14)". If you find any results like that, or summaries of results like that, perhaps you could post them as well.
Can you also let us know your approximate age?
Finally, regarding cancer centers in the New York / New Jersey area, ones that come to mind off the top of my head include Memorial Sloan-Kettering, Weill Cornell, and St. Vincent's / Beth Israel in New York City; and the John Theurer Cancer Center in Hackensack.
Other forum readers should not hesitate to chime in, however, with their own recommendations regarding treatment centers.
All the best,
Boris.
That's a really helpful summary of your treatment history. Thank you.
I understand completely how this must be a difficult time for you and your family. All of us here on the forum are hoping you can find a good solution to the challenges you're facing, so that you and your family can rest easier.
If you would, could you go through some of your test results to make sure you don't have any information about any myeloma-related genetic mutations that you might have. The results may be listed in the results of "bone marrow cultures." Look for things that look like "11q13" or "del(14)" or "t(4;14)". If you find any results like that, or summaries of results like that, perhaps you could post them as well.
Can you also let us know your approximate age?
Finally, regarding cancer centers in the New York / New Jersey area, ones that come to mind off the top of my head include Memorial Sloan-Kettering, Weill Cornell, and St. Vincent's / Beth Israel in New York City; and the John Theurer Cancer Center in Hackensack.
Other forum readers should not hesitate to chime in, however, with their own recommendations regarding treatment centers.
All the best,
Boris.
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Boris Simkovich - Name: Boris Simkovich
Founder
The Myeloma Beacon
Re: Carfilzomib- Clinical Trial
There are many ways to approach your current clinical status. I would tend to agree with your oncologist that moving to an autologous transplant ASAP would be a good next step. This is especially true because your stem cells are already harvested. You are ready to go !
The purpose of transplant in multiple myeloma has traditionally been to ATTAIN a CR or VRPR. In the not so distant past very few patients could get a CR without a transplant. A common misconception amoung patients (and health care providers!) is that a stem cell transplant for myeloma must be done when patients are already in a remission or near remission.While this may be ideal (it is currently a research topic) it is by no means mandatory or critical.
It is possible that you could respond well and for a long time to the transplant regimen (high dose melphalan.... a drug you have not yet received and one that has significant efficacy in myeloma). After the transplant maintenance therapy could be considered.
There are a number of studies using Carfilzomib in the relapsed setting. If your center does not have a Carfilzomib trial then finding another center that does is a consideration. There are several other drugs currently available in a research trial including pomalidomide, HDAC Inhibitors,monoclonal antibodies, alkylating agents, heat shock protein inhibitors, PI3K / AKT inhibitor and mTOR inhibitors.
You are relatively near many excellent centers for myeloma but it sounds like the physicans caring for you currently are providing excellent care and advice. A second opinion will not hurt though unless it delays your next treament. It sounds like things need to move pretty quickly. You dont want to lose control of the disease and then suffer its ravages.
The purpose of transplant in multiple myeloma has traditionally been to ATTAIN a CR or VRPR. In the not so distant past very few patients could get a CR without a transplant. A common misconception amoung patients (and health care providers!) is that a stem cell transplant for myeloma must be done when patients are already in a remission or near remission.While this may be ideal (it is currently a research topic) it is by no means mandatory or critical.
It is possible that you could respond well and for a long time to the transplant regimen (high dose melphalan.... a drug you have not yet received and one that has significant efficacy in myeloma). After the transplant maintenance therapy could be considered.
There are a number of studies using Carfilzomib in the relapsed setting. If your center does not have a Carfilzomib trial then finding another center that does is a consideration. There are several other drugs currently available in a research trial including pomalidomide, HDAC Inhibitors,monoclonal antibodies, alkylating agents, heat shock protein inhibitors, PI3K / AKT inhibitor and mTOR inhibitors.
You are relatively near many excellent centers for myeloma but it sounds like the physicans caring for you currently are providing excellent care and advice. A second opinion will not hurt though unless it delays your next treament. It sounds like things need to move pretty quickly. You dont want to lose control of the disease and then suffer its ravages.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Carfilzomib- Clinical Trial
Dr. Libby-
Thank you so much for your advice. I am confused on next steps. In May my doctor held off on doing the transplant because he said with the active myeloma we would put the body through a lot for little mileage. He has recently changed his mind. He is giving the Thalidomide with increased steroids and Clarithromycin 1 month. Considering my myeloma is very much active, is it possible to receive an extended period of remission after an auto transplant. Have you seen cases where this has happened?
Warmest regards,
Sunshine
Thank you so much for your advice. I am confused on next steps. In May my doctor held off on doing the transplant because he said with the active myeloma we would put the body through a lot for little mileage. He has recently changed his mind. He is giving the Thalidomide with increased steroids and Clarithromycin 1 month. Considering my myeloma is very much active, is it possible to receive an extended period of remission after an auto transplant. Have you seen cases where this has happened?
Warmest regards,
Sunshine
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sunshine15 - When were you/they diagnosed?: 2007
- Age at diagnosis: 49
Re: Carfilzomib- Clinical Trial
Carfilzomib is still recruiting patients. You can go to Clinicaltrials.gov and look for this trial: NCT01365559
On that page is the contact information for each trial site.
I hope this helps.
Cheryl A. Cross, MPH
Sr. Director at
Oncotherapeutics
On that page is the contact information for each trial site.
I hope this helps.
Cheryl A. Cross, MPH
Sr. Director at
Oncotherapeutics
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Cheryl A. Cross, MPH
Re: Carfilzomib- Clinical Trial
Thank you Cheryl!! I actually received a call yesterday from my doctor regarding Carfilzomib. I will meet with the doctor who runs the trial Monday afternoon. I am so nervous and praying I qualify and that this works, as nothing has worked thus far. My labs were posted and my M-Spike has gone to 1.8, increasing rapidly. My ultimate goal is to finally have my stem cell transplant. Hopefully Carfilzomib will give me the push I need to obtain transplant, as I don’t know how much more I can take 
Although initial results for Carfilzomib are not substantial I could be in that percentage that responds to treatment!!
Again, thank you all for your insight. This is such a difficult situation and your comments and suggestions provide much needed solace.
Although initial results for Carfilzomib are not substantial I could be in that percentage that responds to treatment!!Again, thank you all for your insight. This is such a difficult situation and your comments and suggestions provide much needed solace.
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sunshine15 - When were you/they diagnosed?: 2007
- Age at diagnosis: 49
Re: Carfilzomib- Clinical Trial
Hi Sunshine,
I have seen prolonged responses (and short ones) in patients in your situation after transplant. Your oncologist has far more information about your clinical status than I and I must defer to his/her clinical judgement. I am pleased that you may be able to participate in tha Carfilzomib trial.
I have seen prolonged responses (and short ones) in patients in your situation after transplant. Your oncologist has far more information about your clinical status than I and I must defer to his/her clinical judgement. I am pleased that you may be able to participate in tha Carfilzomib trial.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
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