Hello,
My husband was diagnosed last August at age 31. He was very sick with severe anemia and elevated kidney values, had lost a lot of weight, and in a lot of pain.
His initial treatment regimen (VRD - Velcade, Revlimid, and dexamethasone) gave only a partial response and his myeloma specialist (we travel to Charlotte to see him) recommended starting VRD-PACE. This got him into a complete response but left him with terrible neuropathy (anemia and azotemia resolved). We are currently Day +21 after an auto stem cell transplant (SCT) that has so far gone far better than I was anticipating and has been managed almost entirely as an outpatient.
My question is: What to do next? Due to Trevor's young age, our specialist wants to be very aggressive and is recommending an allo SCT with his 67 year old father as a haplo donor. As far as I know, a search for an unrelated donor has not been performed. His one biologic sister is not a match. It seems like tandem auto SCTs are also an option from what I hear.
I am having a lot of trouble finding relevant information due to him being such an outlier and am wondering if others have been in the same situation and what treatment courses have been recommended.
I've been told to anticipate a fight with insurance if the allo route is pursued, and also that we will likely have to relocate during the process to be near a center that performs more of them. I'm open to any thoughts, guidance, suggestions.
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mjscottdvm - Name: Marisa
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 8/2014
- Age at diagnosis: 31
Re: Next step after auto SCT for young patient?
Marisa,
It is very difficult to decide what is next for young patients. I am sorry you and your husband are dealing with this.
I cannot give you advice, but I will share my daughter's story. She was diagnosed at 32 in January 2012. Induction therapy was 4 rounds of Velcade and dex, which brought her into CR. In August 2012 she had a SCT. She was in CR and started Revlimid and dex maintenance therapy. In March 2014 her numbers started going up. They watched them, increased Revlimid to 25 mg, but it did not stop numbers rising.
In August 2014 she started carfilzomib (Kyprolis) and dex, which did not work. In November 2014 she had DCEP high-dose chemo and her brother was tested to see if he was a match. The DCEP took a toll on her body. Her brother is a half match.
The donor transplant was to be done at Jefferson in Philadelphia, which has experience with half match transplants. In January 2015 they said her body was too worn down to do the transplant. She was sent to Penn in Philadelphia for a clinical trial, which worked great to knock the myeloma numbers down. The trial started in February. Unfortunately, in June the numbers started increasing again, so now she is preparing to start another trial at Penn. The Penn doc does not think an allo would be a good idea. They will be starting a trial of T-cell infusions soon, which he thinks she should do.
There are some on the forum who have had allo transplants with success before they relapsed. Even though it sounds really hard, statistically it has a much better rate of success before relapse. The one thing we find very frustrating is the difference of opinion between doctors. Sloan Kettering has a different opinion than the other two hospitals. One thing is that if your husband has an allo, it eliminates some of the new therapies like T cell if it doesn't work.
You must remember this is my daughter's story and everyone is different. Good luck in your research and decisions. The Beacon is a good place to get information, and I am sure others will give you their experiences.
It is very difficult to decide what is next for young patients. I am sorry you and your husband are dealing with this.
I cannot give you advice, but I will share my daughter's story. She was diagnosed at 32 in January 2012. Induction therapy was 4 rounds of Velcade and dex, which brought her into CR. In August 2012 she had a SCT. She was in CR and started Revlimid and dex maintenance therapy. In March 2014 her numbers started going up. They watched them, increased Revlimid to 25 mg, but it did not stop numbers rising.
In August 2014 she started carfilzomib (Kyprolis) and dex, which did not work. In November 2014 she had DCEP high-dose chemo and her brother was tested to see if he was a match. The DCEP took a toll on her body. Her brother is a half match.
The donor transplant was to be done at Jefferson in Philadelphia, which has experience with half match transplants. In January 2015 they said her body was too worn down to do the transplant. She was sent to Penn in Philadelphia for a clinical trial, which worked great to knock the myeloma numbers down. The trial started in February. Unfortunately, in June the numbers started increasing again, so now she is preparing to start another trial at Penn. The Penn doc does not think an allo would be a good idea. They will be starting a trial of T-cell infusions soon, which he thinks she should do.
There are some on the forum who have had allo transplants with success before they relapsed. Even though it sounds really hard, statistically it has a much better rate of success before relapse. The one thing we find very frustrating is the difference of opinion between doctors. Sloan Kettering has a different opinion than the other two hospitals. One thing is that if your husband has an allo, it eliminates some of the new therapies like T cell if it doesn't work.
You must remember this is my daughter's story and everyone is different. Good luck in your research and decisions. The Beacon is a good place to get information, and I am sure others will give you their experiences.
Re: Next step after auto SCT for young patient?
I was 48 and now 49 with a very similar medical and treatment history as your husband. I had an allo transplant two months after my auto transplant, using my brother's cells (90% match; we have a flip flop antigen, so he is considered "mismatched" for medical reasons). Today is Day 72 post allo for me. It was tough for a while, but I am doing really well right now.
You can follow my postings on the Beacon under "My Mini-Allo Transplant Journey."
I am in Seattle at SCCA / Fred Hutchinson, and they do a number of allos - most as part of clinical trials. I have Blue Cross PPO and they approved it.
Feel free to send me questions!
Cindy
You can follow my postings on the Beacon under "My Mini-Allo Transplant Journey."
I am in Seattle at SCCA / Fred Hutchinson, and they do a number of allos - most as part of clinical trials. I have Blue Cross PPO and they approved it.
Feel free to send me questions!
Cindy
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CindyBrown - Name: Cindy Brown
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 4/26/14
- Age at diagnosis: 48
Re: Next step after auto SCT for young patient?
Hi mjscottdvm,
Sorry to hear about your husband's diagnosis at such a young age. I was in my early 40's at diagnosis. I ended up getting 3 opinions. Two of the three recommended upfront allogeneic transplant. It was actually the third doctor that did not recommend upfront allo. I had already made up my mind that I was going to do the allo by that time. I had actually gone for the third opinion to see how this doctor would recommend doing the allo. I was surprised he did not recommend upfront allo, since he only thought I would get 20 months of remission with drugs / autos / maintenance.
It sounds like you have an excellent doctor who discusses all available treatment options. I would question why he is recommending a haplo without checking for a matched unrelated donor as well. Typically, younger donors are preferred to older donors. There are many different ways to do an allo, so getting different opinions on how to do an allo (if you choose to go that route) is important.
As TerriJ mentions, allos typically do not work very well when done after a patient relapses. I usually tell other patients that an allo works best when it is used as consolidation / maintenance of first remission. In an ideal setting, a patient would be in complete response and MRD negative at the time of transplant. It is extremely difficult to cure a myeloma patient (and most blood cancer patients) after they relapse. I attended a long-term survivor get-together at my transplant center a few weeks back. I met multiple patients who had been cured of blood cancer. Everyone I met said they did an allo in first complete response.
I did my allo a little over 4 years ago. I would rate my quality of life as a 9 out of 10. The only reason I would not give it a 10 is that I had 3 compression fractures in my back at diagnosis, so I cannot do all of the exercises I used to do, and I get a little back pain if I overdue it. Doing the allo upfront was an easy decision for me, as I did not see any other potential cure for a high-risk myeloma patient. It was one of the best decisions I ever made.
Best of luck moving forward. Myeloma patients as young as your husband are indeed rare.
Mark
Sorry to hear about your husband's diagnosis at such a young age. I was in my early 40's at diagnosis. I ended up getting 3 opinions. Two of the three recommended upfront allogeneic transplant. It was actually the third doctor that did not recommend upfront allo. I had already made up my mind that I was going to do the allo by that time. I had actually gone for the third opinion to see how this doctor would recommend doing the allo. I was surprised he did not recommend upfront allo, since he only thought I would get 20 months of remission with drugs / autos / maintenance.
It sounds like you have an excellent doctor who discusses all available treatment options. I would question why he is recommending a haplo without checking for a matched unrelated donor as well. Typically, younger donors are preferred to older donors. There are many different ways to do an allo, so getting different opinions on how to do an allo (if you choose to go that route) is important.
As TerriJ mentions, allos typically do not work very well when done after a patient relapses. I usually tell other patients that an allo works best when it is used as consolidation / maintenance of first remission. In an ideal setting, a patient would be in complete response and MRD negative at the time of transplant. It is extremely difficult to cure a myeloma patient (and most blood cancer patients) after they relapse. I attended a long-term survivor get-together at my transplant center a few weeks back. I met multiple patients who had been cured of blood cancer. Everyone I met said they did an allo in first complete response.
I did my allo a little over 4 years ago. I would rate my quality of life as a 9 out of 10. The only reason I would not give it a 10 is that I had 3 compression fractures in my back at diagnosis, so I cannot do all of the exercises I used to do, and I get a little back pain if I overdue it. Doing the allo upfront was an easy decision for me, as I did not see any other potential cure for a high-risk myeloma patient. It was one of the best decisions I ever made.
Best of luck moving forward. Myeloma patients as young as your husband are indeed rare.
Mark
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Mark11
Re: Next step after auto SCT for young patient?
At the time of our daughter's diagnosis, she had 70% myeloma cells and had all the "CRAB" criteria. We had never heard of the disease. What the doctors suggested was induction, followed by 2 auto transplants back to back, and then maintenance therapy. She responded so well as I stated in my post above that she only did one auto transplant. At the time, no one even suggested an allo.
Now, the statistics for an allo after relapse do not seem good to me. 30% chance of mortality, with only 20% chance of it actually working. That has made us think of an allo as a last resort. The doctor at Penn doesn't recommend it. Right now I feel the clinical trials are a stopgap method to get her to daratumumab approval by the FDA or the new trial that Penn and Sloan will be doing soon with T cells.
Now, the statistics for an allo after relapse do not seem good to me. 30% chance of mortality, with only 20% chance of it actually working. That has made us think of an allo as a last resort. The doctor at Penn doesn't recommend it. Right now I feel the clinical trials are a stopgap method to get her to daratumumab approval by the FDA or the new trial that Penn and Sloan will be doing soon with T cells.
Re: Next step after auto SCT for young patient?
Cindy Brown & Mark11 have the experience with allo transplants. I agree that having one before relapse would be best. There is a blogger named EJ Bones who has relapsed and is having one in July with her sister as a full match. She lives in England, though, so some of the protocols may be different. I am assuming you live near Charlotte, North Carolina and Duke would be my choice for transplant. There is a difference of opinion on half match and full match donors. I know Johns Hopkins in Baltimore does half matches with success.
I feel your pain and concern for your husband. This is a difficult disease and totally overwhelming in the choices to be made. Find out as much as you can and he needs to go with what he feels is best.
I feel your pain and concern for your husband. This is a difficult disease and totally overwhelming in the choices to be made. Find out as much as you can and he needs to go with what he feels is best.
Re: Next step after auto SCT for young patient?
Hello Marissa:
Best of luck to you and your husband. It is obvious that you all have been through a lot. From your postingm I can see that you both are doing a fantastic job of dealing with a difficult situation. Just a couple of thoughts I would like to add.
Maybe you are aware already, but just in case not, hear goes. Dr. Lonial at Winship in Atlanta has been the recent star of the research community for myeloma. He is leading both the elotuzumab and daratumumab studies, which are probably going to be the next up new drugs. He also has done studies on high risk patients regarding maintenance. It may be worth it to see what might be available there.
Secondly, there are very few clinical studies available for patients have just reached CR as in your case (congratulations on that). At first relapse, however, a much larger amount of options open up. What exactly constitutes relapse, however, is something that varies. Based on your husband's high risk factors, you may be able to get a very early call on the first adverse signal, to qualify for trials.
Third, I assume that you all had the FISH test. Certain of the chromosomal abnormalities (CA's) can suggest specific treatment approaches, Doctors are at the very start of figuring this out, so I would ask your doctor to go over it with you in detail, and get a second opinion if this is something he/she is not very familiar with.
I know that this is tough at any age. I hope you both continue to hold up well, and that your husband is one of the record setters for surviving this. Regards,
Best of luck to you and your husband. It is obvious that you all have been through a lot. From your postingm I can see that you both are doing a fantastic job of dealing with a difficult situation. Just a couple of thoughts I would like to add.
Maybe you are aware already, but just in case not, hear goes. Dr. Lonial at Winship in Atlanta has been the recent star of the research community for myeloma. He is leading both the elotuzumab and daratumumab studies, which are probably going to be the next up new drugs. He also has done studies on high risk patients regarding maintenance. It may be worth it to see what might be available there.
Secondly, there are very few clinical studies available for patients have just reached CR as in your case (congratulations on that). At first relapse, however, a much larger amount of options open up. What exactly constitutes relapse, however, is something that varies. Based on your husband's high risk factors, you may be able to get a very early call on the first adverse signal, to qualify for trials.
Third, I assume that you all had the FISH test. Certain of the chromosomal abnormalities (CA's) can suggest specific treatment approaches, Doctors are at the very start of figuring this out, so I would ask your doctor to go over it with you in detail, and get a second opinion if this is something he/she is not very familiar with.
I know that this is tough at any age. I hope you both continue to hold up well, and that your husband is one of the record setters for surviving this. Regards,
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JPC - Name: JPC
Re: Next step after auto SCT for young patient?
Thank you all for your responses and kind words. You have given me a lot to think about and go over in the near future and I appreciate your well thought out and informed suggestions.
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mjscottdvm - Name: Marisa
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 8/2014
- Age at diagnosis: 31
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