We went for our first appointment at the transplant center to set everything up for my husband's autologous transplant this summer. Much to our surprise, the doctor (who we had never met before) said that the genetic testing results had come in and that my husband has four genetic mutations that suggest an aggressive, high-risk myeloma.
Thus they no longer consider him a candidate for an autologous transplant and want him to do an allo transplant. She said he has a very rare case and suggested that we get a second opinion from Mayo Clinic before deciding what to do. This is partly because he also has myeloproliferative disorder (not one of the main kinds, but in the "otherwise unclassified" category), which she sees as him having a second unique blood cancer and our oncologist sees as being a side effect caused by the myeloma. Either way, they both have never seen anything like it and we are going to Mayo to talk to a myeloma expert.
I have read the threads on allo transplants and now realize how important the closeness of donor matching is. The hospital started the search process but we do not yet know if his sister is a match (they have to send the test kit to another country for her) or if there is anyone in the registry who is a match, or if his fibrosis is too advanced for cord blood.
I see that other people have also struggled with the decision of whether to go ahead with such a dangerous treatment. My husband is relatively young (54) and otherwise healthy, so it freaks him out to undergo a procedure that has a 20% mortality rate when at the moment the Revlimid/dexamethasone/carfilzomib regimen is beating back the cancer so effectively (after Velcade didn't work) and he doesn't feel horrible like a person in need of drastic medical intervention. He would go through almost anything to watch our young child grow up for longer, but they said there's only a 35% chance that in 2-3 years he will have both survived the procedure and have the myeloma under control. So it seems like a lot of suffering for not a very great chance at more time. But if he's one of the lucky 35%, of course then we'd probably look back and say it was all worthwhile.
Obviously we will be asking the doctor at Mayo if he agrees with the statistics and prognosis given by the transplant center, and what the prognosis would be if my husband did not proceed with the allo transplant (or if he delayed it). For all I know, the chances could be less than 35% that this regimen will keep the myeloma at bay for 2-3 years, making the choice to go with the allo transplant more alluring.
Is there anything else I should be asking about the cytogenetics? Or new developments in treatment? I don't want to drive all the way to Rochester and not ask the right questions to get the most out of the appointment.
Thanks in advance for any insight. We're new to all this, and it's been a big help to read posts by people who have started down this path (which none of us want to be on) earlier.
Forums
-
mplsterrapin - Name: Ari
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Fall 2015
- Age at diagnosis: 54
Re: Allo transplant due to high-risk cytogenetics?
Hello MPLS:
I am very sorry to hear about your travails. To state the obvious, very difficult decision. I think you are correct to go the Mayo Clinic. I think that there is a much better chance that they probably have seen this condition before, which of course is something you would want.
My only advise to you regarding questions is to ask about the monoclonal antibodies. Darzalex (daratumumab) and Empliciti (elotuzumab) are approved, but neither are approved for front line, but I am thinking based on what you have been told, that there might be an exception in your case. Also the "next up" monoclonal antibodies seem to be Keytruda (pembrolizumab) and Tecentriq (atezolizumab). Those and others may be available on clinical trial. Early indicators are that monoclonal antibodies are doing well against traditionally bad cytogenetic abnormalities.
Good luck.
I am very sorry to hear about your travails. To state the obvious, very difficult decision. I think you are correct to go the Mayo Clinic. I think that there is a much better chance that they probably have seen this condition before, which of course is something you would want.
My only advise to you regarding questions is to ask about the monoclonal antibodies. Darzalex (daratumumab) and Empliciti (elotuzumab) are approved, but neither are approved for front line, but I am thinking based on what you have been told, that there might be an exception in your case. Also the "next up" monoclonal antibodies seem to be Keytruda (pembrolizumab) and Tecentriq (atezolizumab). Those and others may be available on clinical trial. Early indicators are that monoclonal antibodies are doing well against traditionally bad cytogenetic abnormalities.
Good luck.
-
JPC - Name: JPC
Re: Allo transplant due to high-risk cytogenetics?
MPLS,
There is a clinical trial for newly diagnosed high risk patients which includes the monoclonal antibody elotuzumab (Empliciti). I am in this trial and I am still in remission 2 years later without a stem cell transplant (and I have 17p deletion). You may want to inquire to see if your husband qualifies.
There is a clinical trial for newly diagnosed high risk patients which includes the monoclonal antibody elotuzumab (Empliciti). I am in this trial and I am still in remission 2 years later without a stem cell transplant (and I have 17p deletion). You may want to inquire to see if your husband qualifies.
-
Janet1520
Re: Allo transplant due to high-risk cytogenetics?
Thank you for telling me about the monoclonal antibodies! I will definitely ask about that.
What state is your clinical trial in, Janet? The 17p deletion you have is one of my husband's mutations too.
What state is your clinical trial in, Janet? The 17p deletion you have is one of my husband's mutations too.
-
mplsterrapin - Name: Ari
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Fall 2015
- Age at diagnosis: 54
Re: Allo transplant due to high-risk cytogenetics?
I'm in Southern California and I go to City of Hope.
-
Janet1520
Re: Allo transplant due to high-risk cytogenetics?
You are going to the right place! Mayo sees so many multiple myeloma patients, and even though your husband's case is unusual, it won't be unknown to them. My husband has been going to Mayo for over 5 years. He's a 17p deletion patient, and had an autologous transplant. Right after his transplant (4.5 years ago), his Mayo doc said if he failed the transplant, then an allo would be the next step. He now says that he has regretted every allo he has ever done. My husband is on a monoclonal antibody treatment (Darzalex), and is doing very well. (Just because his doctor now is not a fan of allos does not mean it isn't the right treatment for your husband. Every situation is different. I'm just trying to stress that Mayo is a great place to go, and will be up on all the most current treatments.)
-
rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Allo transplant due to high-risk cytogenetics?
rumnting,
Thanks for your encouragement. We do feel confident that Mayo is doing an excellent job with my husband's case. We heard the same thing from our Mayo doc that you did. In his opinion, doing an allogeneic transplant for multiple myeloma just isn't worth the risk, no matter how high-risk the mutations. However, unfortunately, the Mayo people are strongly leaning toward the idea that my husband also has a separate myeloproliferative disorder, so basically two blood cancers at once. Believe it or not, he actually managed to be the case that they hadn't seen before.
He is tentatively scheduled for an allogeneic transplant at the end of this chemo cycle in two weeks because an autologous transplant wouldn't help the myeloproliferative disorder at all and his current regimen is losing its effectiveness against the myeloma, but we're waiting for final confirmation from Mayo. Whatever he has is so rare they can't even figure out what kind of myeloproliferative disorder it is, and they're trying to pin it down more precisely before the transplant. Our joke is that I fell in love with him because he's so special, but I didn't want him to be THIS special.
It's encouraging to hear your husband is doing so well with the 17p deletion. I hope all these advances in myeloma treatment continue.
Thanks for your encouragement. We do feel confident that Mayo is doing an excellent job with my husband's case. We heard the same thing from our Mayo doc that you did. In his opinion, doing an allogeneic transplant for multiple myeloma just isn't worth the risk, no matter how high-risk the mutations. However, unfortunately, the Mayo people are strongly leaning toward the idea that my husband also has a separate myeloproliferative disorder, so basically two blood cancers at once. Believe it or not, he actually managed to be the case that they hadn't seen before.
He is tentatively scheduled for an allogeneic transplant at the end of this chemo cycle in two weeks because an autologous transplant wouldn't help the myeloproliferative disorder at all and his current regimen is losing its effectiveness against the myeloma, but we're waiting for final confirmation from Mayo. Whatever he has is so rare they can't even figure out what kind of myeloproliferative disorder it is, and they're trying to pin it down more precisely before the transplant. Our joke is that I fell in love with him because he's so special, but I didn't want him to be THIS special.
It's encouraging to hear your husband is doing so well with the 17p deletion. I hope all these advances in myeloma treatment continue.
-
mplsterrapin - Name: Ari
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Fall 2015
- Age at diagnosis: 54
Re: Allo transplant due to high-risk cytogenetics?
rumnting wrote:
It does not sound like this doctor is much of an expert in using allogeneic transplants. The optimal time to use one is when a patient is responding to therapy, not when they are not. That has been known since the late 70's. This also speaks very poorly of Mayo Clinic's ability to use a standard therapy that has cured many blood cancer patients.
mplsterrapin wrote:
I felt incredibly fortunate to have had the opportunity to use curative immunotherapy (i.e., an allogeneic transplant) as part of my upfront therapy That "terrible" curative therapy has provided this high risk patient with 5 years (and counting) of myeloma drug-free remission with an excellent quality of life. I really cannot understand why a patient or doctor would say something negative about a therapy that has been curing blood cancer patients for decades.
"He's a 17p deletion patient, and had an autologous transplant. Right after his transplant (4.5 years ago), his Mayo doc said if he failed the transplant, then an allo would be the next step. He now says that he has regretted every allo he has ever done.
It does not sound like this doctor is much of an expert in using allogeneic transplants. The optimal time to use one is when a patient is responding to therapy, not when they are not. That has been known since the late 70's. This also speaks very poorly of Mayo Clinic's ability to use a standard therapy that has cured many blood cancer patients.
mplsterrapin wrote:
However, unfortunately, the Mayo people are strongly leaning toward the idea that my husband also has a separate myeloproliferative disorder, so basically two blood cancers at once.
I felt incredibly fortunate to have had the opportunity to use curative immunotherapy (i.e., an allogeneic transplant) as part of my upfront therapy That "terrible" curative therapy has provided this high risk patient with 5 years (and counting) of myeloma drug-free remission with an excellent quality of life. I really cannot understand why a patient or doctor would say something negative about a therapy that has been curing blood cancer patients for decades.
-
Mark11
Re: Allo transplant due to high-risk cytogenetics?
Mark11,
Thanks for sharing your success story. There doesn't seem to be a good alternative to an allogeneic transplant for my husband, so it's nice to have some positive thoughts about getting through it and having good results.
What gave my husband pause was the quoted 15-20% mortality rate and the ~40% chance of graft-versus-host complications, the latter of which we have been warned can drastically affect quality of life.
At both the University of Minnesota and Mayo transplant centers, they said that with his high-risk myeloma mutations (not even taking into consideration the other cancer since it's so rare they don't have statistics), he has about a one-third chance of being alive and with the myeloma in remission in two to three years. That sounds kind of grim, but of course we are dreaming of his being among the lucky one-third who go through the process and emerge on the other side able to get back to living their life. I'm so happy that worked out for you and hope we will be able to say the same.
Thanks for sharing your success story. There doesn't seem to be a good alternative to an allogeneic transplant for my husband, so it's nice to have some positive thoughts about getting through it and having good results.
What gave my husband pause was the quoted 15-20% mortality rate and the ~40% chance of graft-versus-host complications, the latter of which we have been warned can drastically affect quality of life.
At both the University of Minnesota and Mayo transplant centers, they said that with his high-risk myeloma mutations (not even taking into consideration the other cancer since it's so rare they don't have statistics), he has about a one-third chance of being alive and with the myeloma in remission in two to three years. That sounds kind of grim, but of course we are dreaming of his being among the lucky one-third who go through the process and emerge on the other side able to get back to living their life. I'm so happy that worked out for you and hope we will be able to say the same.
-
mplsterrapin - Name: Ari
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Fall 2015
- Age at diagnosis: 54
Re: Allo transplant due to high-risk cytogenetics?
Hi MPLSterrapin
So very sorry to hear of your husband's situation. I am glad you have taken the consult down there and are being offered an allo transplant option. It's important to understand outright survival and progression free survival. You can have progression free survival with maintenance drugs, but not necessarily a great quality of life if those drugs prove to be difficult for your husband.
While the allo statistics are scary, if it works, it is your husband's best shot at a longer, better quality of life. CAR-T therapies hold promise, but are not going to work for everyone. There's little reason to think your husband's case would be qualified for a CAR-T program at this time.
There is still a small group of multiple myeloma patients (probably less than 10% now that Darzalex and its cousins are FDA approved) who do not get any sustainable help with the FDA-approved regimens or the drugs currently in clinical trials. It's a difficult, not very rewarding, "get up each day feeling lousy and dig for a reason to make the best of it" kind of a road, capped off by a short life expectancy.
So very sorry to hear of your husband's situation. I am glad you have taken the consult down there and are being offered an allo transplant option. It's important to understand outright survival and progression free survival. You can have progression free survival with maintenance drugs, but not necessarily a great quality of life if those drugs prove to be difficult for your husband.
While the allo statistics are scary, if it works, it is your husband's best shot at a longer, better quality of life. CAR-T therapies hold promise, but are not going to work for everyone. There's little reason to think your husband's case would be qualified for a CAR-T program at this time.
There is still a small group of multiple myeloma patients (probably less than 10% now that Darzalex and its cousins are FDA approved) who do not get any sustainable help with the FDA-approved regimens or the drugs currently in clinical trials. It's a difficult, not very rewarding, "get up each day feeling lousy and dig for a reason to make the best of it" kind of a road, capped off by a short life expectancy.
-
philatour - Who do you know with myeloma?: spouse
11 posts
• Page 1 of 2 • 1, 2
Return to Treatments & Side Effects