Hi,
I have just been a lurker here for 8 years since my husband was first diagnosed. He did radiation, Velcade, Revlimid, and dexamethasone before doing an autologous stem cell transplant back in 2010. He took Revlimid as maintenance for 5 years and we had 7 wonderful years of complete remission.
The myeloma reared it's ugly head again in May 2017. We monitored for a while, then he had a transplant in April 2018. His three-month post-transplant check up revealed that the transplant was a complete failure. He is nonsecretory, so he has no M-spike, but the PET scan showed new myeloma activity all over, and the biopsy came back 70% plasma cells.
So the plan is for him to start treatment with Kyprolis (carfilzomib), cyclophosphamide (Cytoxan), and dexamethasone for two rounds and then redo a PET scan and biopsy. I asked if an autologous transplant was an option after that, and was told not anymore due to it doing nothing the first time.
So what can we expect in terms of survival with only being able to do the various drug treatments available? An allogeneic transplant was mentioned as a potential option further down the road, but the thought of that is pretty scary for both of us.
We have two boys, 11 and 9. We were stunned to get this news, as he had such a wonderful response the first time around. Just trying to get prepared as to what we can expect as we continue on this journey
Thank you in advance.
Deb
Forums
5 posts
• Page 1 of 1
-
Deb2018 - Who do you know with myeloma?: My husband
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 36
Re: Survival with stem cell transplant not an option?
Deb,
For what it is worth, many of us never had a stem cell transplant and have kept the multiple myeloma at bay with drugs other than the high-dose melphalan administered during the transplant process. I have been battling this disease for 9 1/2 years. I am primarily light chain only, as I did not have a measurable M-spike, and even now it is only at 0.2 g/dL (2 g/l). The entire battery of drugs is available to your husband and there have been a slew of them approved by the FDA since I was diagnosed. They are normally combined into triplets and in many cases they have proven to be highly effective. I would suggest reading the News section of the Beacon, where the types of drugs used are discussed. Don't be despondent; there are a lot of tools still in the tool box. Just because a second stem cell transplant did not work does not mean that treatment with other drugs will also fail.
For what it is worth, many of us never had a stem cell transplant and have kept the multiple myeloma at bay with drugs other than the high-dose melphalan administered during the transplant process. I have been battling this disease for 9 1/2 years. I am primarily light chain only, as I did not have a measurable M-spike, and even now it is only at 0.2 g/dL (2 g/l). The entire battery of drugs is available to your husband and there have been a slew of them approved by the FDA since I was diagnosed. They are normally combined into triplets and in many cases they have proven to be highly effective. I would suggest reading the News section of the Beacon, where the types of drugs used are discussed. Don't be despondent; there are a lot of tools still in the tool box. Just because a second stem cell transplant did not work does not mean that treatment with other drugs will also fail.
-
Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Survival with stem cell transplant not an option?
One option would be CAR T-cell therapy, which should become available outside of clinical trials sometime in the next few years. In the meantime, there are are a variety of new drugs available for treatment.
-
JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Survival with stem cell transplant not an option?
Hello Deb,
I am sorry to hear about your husband's myeloma condition. I think that JBarnes and Ron make good points about there being other drug treatments available, and also CAR T-cell therapy. Have you discussed the complete range of treatments available with your doctors?
Another drug that almost certainly will be an option is Darzalex, a monoclonal antibody that targets the CD38 antigens on the surface of the myeloma cancer cells. It is available in the US and in some European countries also (and maybe other countries too). It is approved in Canada but not yet publicly funded; Kyprolis is funded in some provinces, as well as Velcade, Revlimid, and Pomalyst, along with the ubiquitous dexamethasone and Cytoxan. Some centres may also have clinical trials that your husband could be placed onto.
Good luck, and I hope that the Kyprolis, cyclophosphamide, and dexamethasone combination works, but it wouldn't hurt to ask more questions of your doctor.
I am sorry to hear about your husband's myeloma condition. I think that JBarnes and Ron make good points about there being other drug treatments available, and also CAR T-cell therapy. Have you discussed the complete range of treatments available with your doctors?
Another drug that almost certainly will be an option is Darzalex, a monoclonal antibody that targets the CD38 antigens on the surface of the myeloma cancer cells. It is available in the US and in some European countries also (and maybe other countries too). It is approved in Canada but not yet publicly funded; Kyprolis is funded in some provinces, as well as Velcade, Revlimid, and Pomalyst, along with the ubiquitous dexamethasone and Cytoxan. Some centres may also have clinical trials that your husband could be placed onto.
Good luck, and I hope that the Kyprolis, cyclophosphamide, and dexamethasone combination works, but it wouldn't hurt to ask more questions of your doctor.
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Survival with stem cell transplant not an option?
Thanks all for the responses. His doctor did bring up several of the drugs mentioned here, so we know there are still things available to try. We were just so shocked that the stem cell transplant did not work since it worked so well previously. That is one of the frustrating things about this disease; it morphs so you don't know what will or won't work.
-
Deb2018 - Who do you know with myeloma?: My husband
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 36
5 posts
• Page 1 of 1