Hoo boy. It's decision time for me, and I need your help.
On the one hand: today I found out, after a year and a half of waiting, that there is one 7/8 match for me in the National Marrow Donor Program (NMDP). This means that, if all the details fall into line, I can receive an allogeneic stem cell transplant soon. Can. If I want it. As you know, 20% of people die from the treatment alone, and most of those who aren't killed outright don't get a miracle long-term cure.
On the other hand: last month I visited Penn in Philadelphia, where Dr. Cohen, who has been working on CAR T-cell therapies, handed me that tenuous reed of "3-5 years" until a good therapy is ready. As we know, those 3-5 year miracles often don't materialize.
On the third hand, he informed me that if I chose an allogeneic transplant path and survived it, that would make me ineligible for the miracle 3-to-5-year-from-now CAR T-cell therapy should it actually materialize. I know we've discussed this before, but the point continues to confuse me, and I admit, I haven't cleared it up yet. It will be at the top of my list for tomorrow.
The result of all this is that I feel as though I need to make a choice between an established treatment NOW that might kill me quickly but maybe, maybe, MIGHT cure me, and a promise of the future built on phase 1 promises in the air.
Bah!! Decision time! Bah!! Any ideas or feedback for me? People should not have to make decisions like this. It's cruel. Argh!
Forums
-
Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Decision time - should I do an allo transplant?
Tracy,
I really feel your angst. And you are right - nobody should have to make this decision.
Have you considered putting your faith in a top specialist that may not have a direct stake in either approach? After I decided awhile back that I would never do an auto transplant (unless something were to really radically change in my overall condition). I interviewed a number of specialists until I found one that I know I would feel comfortable with turning over a major decision such as which chemo path to go down at any given time, given my particular goals in life.
Specifically, I might suggest seeking out one of the top great and kind souls in the multiple myeloma field at a place like Dana Farber or the Mayo to consult with on this decision. It may make the decision easier. But in full disclosure, I could also see it potentially adding another level of complexity depending on the personality of the person seeking the advice. Only you would know whether having another cook in the kitchen might make things more complicated and lead to "analysis paralysis" or not.
If I were younger and assuming I didn't have to juggle the tortuous issue of what to do if I were responsible for young children, I might very well have considered an allo.
I really feel your angst. And you are right - nobody should have to make this decision.
Have you considered putting your faith in a top specialist that may not have a direct stake in either approach? After I decided awhile back that I would never do an auto transplant (unless something were to really radically change in my overall condition). I interviewed a number of specialists until I found one that I know I would feel comfortable with turning over a major decision such as which chemo path to go down at any given time, given my particular goals in life.
Specifically, I might suggest seeking out one of the top great and kind souls in the multiple myeloma field at a place like Dana Farber or the Mayo to consult with on this decision. It may make the decision easier. But in full disclosure, I could also see it potentially adding another level of complexity depending on the personality of the person seeking the advice. Only you would know whether having another cook in the kitchen might make things more complicated and lead to "analysis paralysis" or not.
If I were younger and assuming I didn't have to juggle the tortuous issue of what to do if I were responsible for young children, I might very well have considered an allo.
Last edited by Multibilly on Fri Nov 13, 2015 7:51 am, edited 1 time in total.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Decision time - should I do an allo transplant?
If you delayed making the decision for a year or two, would you lose the match?
-
cdnirene - Name: Irene S
- Who do you know with myeloma?: me
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 66
Re: Decision time - should I do an allo transplant?
Mark11 is the most knowledgeable poster on this board about allogeneic stem cell transplants. If I recall, he did an autologous transplant followed by an allogeneic, and was about your age. They have mini allos now and the fact that you have a 7/8 match sounds good.
This is a real tough call but, honestly, I don't think the risk is as high as 20% anymore if done at a facility that has true expertise in allos.
I hope Mark11 reaches out as he has a lot of information on this topic
Ron
This is a real tough call but, honestly, I don't think the risk is as high as 20% anymore if done at a facility that has true expertise in allos.
I hope Mark11 reaches out as he has a lot of information on this topic
Ron
-
Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Decision time - should I do an allo transplant?
Gday Tracy,
It's a scary thought that a doctor who I imagine understands the medical jargon finds it hard to make this decision. I am not having a dig. I am feeling your conundrum.
I personally have taken the side of fate for my decision. Before my brothers were tested for compatibility, I decided that if anyone was compatible then I would go for an allo when the time comes. Regardless of the statistics for failure or death. Having said that, being in Australia, a lot of decision making is taken out of the individual's control. Perhaps that is a good thing ...
I considered myself fortunate that one of my brothers is a 100% or 6/6.
I don't understand the whole T-cell thing. Why does doing an allo make you ineligible for T-cell? Can anyone explain that in layman's terms?
Failing logic. Heart versus head. Flip a coin.
I know I have been no use to you whatsoever. Whatever decision you make, I hope it works for you.
Vicki
It's a scary thought that a doctor who I imagine understands the medical jargon finds it hard to make this decision. I am not having a dig. I am feeling your conundrum.
I personally have taken the side of fate for my decision. Before my brothers were tested for compatibility, I decided that if anyone was compatible then I would go for an allo when the time comes. Regardless of the statistics for failure or death. Having said that, being in Australia, a lot of decision making is taken out of the individual's control. Perhaps that is a good thing ...
I considered myself fortunate that one of my brothers is a 100% or 6/6.
I don't understand the whole T-cell thing. Why does doing an allo make you ineligible for T-cell? Can anyone explain that in layman's terms?
Failing logic. Heart versus head. Flip a coin.
I know I have been no use to you whatsoever. Whatever decision you make, I hope it works for you.
Vicki
-
vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Decision time - should I do an allo transplant?
Good morning, Tracy:
I try in my posts to avoid advocating a specific decision or line of treatment to a person asking a question – each person needs to decide for themselves. If I can point out a fact or two they do not know, than I try to do that to help them to make a decision. You are more well read and knowledgeable than me, and you are specifically asking others "what would you do in my situation"? So since you asked, I will step out of character and try and give you some thoughts from a non-medical person who has read a lot.
Point one, I agree with 99% of the posts that Ron makes. However, I disagree with what he said. Your mind has to be going into the allo that mortality risk from the treatment is at least 20%. Don't sugarcoat that aspect of it. There is not enough data to assume any better. Yes, it has improved from 15 years ago, however, back then the mortality rate was 35 to 40%.
Second, you are right that CAR T cells may never come through, or take 5 years, which might be too long to help you. I do think that there are other things in the pipeline and things that would crawl out of the woodwork in the 3 to 5 years time frame. If CAR T's never come to fruition, there will be other things (like MILs, for example).
I recall that you have posted that your condition has aggressive aspects to it, and hence you are considering the allo. Given your age, that is very reasonable. Here are my thoughts. I do not know your exact state, however, if you can treat to minimal residual disease (MRD) negative with available treatments, then that would be a positive, and you would be in a relatively good state to avoid the risk of an allo (though no guarantees, of course). You would at least have a fighting chance to kick the can down the road to the next good treatment.
Have you looked at expanded access of the monoclonal antibodies? In case you have not read, they work on the surface characteristics of multiple myeloma cells, and so they work equally well in the high-risk setting as standard risk. If you have tried everything available now and cannot reach MRD negative, then risk/reward of the very risky allo starts to look better.
I should have mentioned at the top that your post is so real and honest that it is like reading a drama. As you said, I am sorry that you are put in this difficult point, but you have my prayer that you can make the best decision possible.
Good luck to you.
I try in my posts to avoid advocating a specific decision or line of treatment to a person asking a question – each person needs to decide for themselves. If I can point out a fact or two they do not know, than I try to do that to help them to make a decision. You are more well read and knowledgeable than me, and you are specifically asking others "what would you do in my situation"? So since you asked, I will step out of character and try and give you some thoughts from a non-medical person who has read a lot.
Point one, I agree with 99% of the posts that Ron makes. However, I disagree with what he said. Your mind has to be going into the allo that mortality risk from the treatment is at least 20%. Don't sugarcoat that aspect of it. There is not enough data to assume any better. Yes, it has improved from 15 years ago, however, back then the mortality rate was 35 to 40%.
Second, you are right that CAR T cells may never come through, or take 5 years, which might be too long to help you. I do think that there are other things in the pipeline and things that would crawl out of the woodwork in the 3 to 5 years time frame. If CAR T's never come to fruition, there will be other things (like MILs, for example).
I recall that you have posted that your condition has aggressive aspects to it, and hence you are considering the allo. Given your age, that is very reasonable. Here are my thoughts. I do not know your exact state, however, if you can treat to minimal residual disease (MRD) negative with available treatments, then that would be a positive, and you would be in a relatively good state to avoid the risk of an allo (though no guarantees, of course). You would at least have a fighting chance to kick the can down the road to the next good treatment.
Have you looked at expanded access of the monoclonal antibodies? In case you have not read, they work on the surface characteristics of multiple myeloma cells, and so they work equally well in the high-risk setting as standard risk. If you have tried everything available now and cannot reach MRD negative, then risk/reward of the very risky allo starts to look better.
I should have mentioned at the top that your post is so real and honest that it is like reading a drama. As you said, I am sorry that you are put in this difficult point, but you have my prayer that you can make the best decision possible.
Good luck to you.
-
JPC - Name: JPC
Re: Decision time - should I do an allo transplant?
Hi Tracy,
I did a mini allo with a 9/10 match. I am 7 months out and doing really well. I just finished my cyclosporine taper and found out last night that my kappa light chain dropped to 18. I started off at 5136 and was 27 two months ago.
The process was tough and I had one brush with death, but I got through and I am so grateful that I was able to have the transplant. I am having no graft versus host disease (GVHD) and am living a life close to what it was before the journey started. GVHD has a 3-year window, so I am not out of the woods, but as a young woman I think you should do it. If you wait for CAR T-cell therapy, you might not be a candidate, and if you wait for an allo, you might be too sick to do it
(You can read about my mini-allo experience in the forum thread "My mini-allo transplant journey".)
Cindy
I did a mini allo with a 9/10 match. I am 7 months out and doing really well. I just finished my cyclosporine taper and found out last night that my kappa light chain dropped to 18. I started off at 5136 and was 27 two months ago.
The process was tough and I had one brush with death, but I got through and I am so grateful that I was able to have the transplant. I am having no graft versus host disease (GVHD) and am living a life close to what it was before the journey started. GVHD has a 3-year window, so I am not out of the woods, but as a young woman I think you should do it. If you wait for CAR T-cell therapy, you might not be a candidate, and if you wait for an allo, you might be too sick to do it
(You can read about my mini-allo experience in the forum thread "My mini-allo transplant journey".)
Cindy
-
CindyBrown - Name: Cindy Brown
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 4/26/14
- Age at diagnosis: 48
Re: Decision time - should I do an allo transplant?
Our daughter was faced with this dilemma, although in the end it was taken out of her hands. After relapse and high-dose chemo, she was presented with the choice to do an allogeneic transplant with her brother as a half match. Unfortunately, in January she became so ill from high-dose chemo they had to postpone the allo. It was a fight to keep the myeloma numbers down. She was going to enroll in the T-cell therapy trial at Penn where she was doing clinical trials, but this summer everything they tried did not work on her aggressive disease, so she was eliminated from the chance of the trial. She passed away in October.
I cannot give you advice on what would be best for you. It is a terrible choice to have to make. In both cases you are taking a risk. Good luck and I wish you well and peace with your decision.
I cannot give you advice on what would be best for you. It is a terrible choice to have to make. In both cases you are taking a risk. Good luck and I wish you well and peace with your decision.
Re: Decision time - should I do an allo transplant?
Hi TracyJ.,
Your finding a donor brings to mind the old saying, "Don't wish too hard for something, you may actually get it"!
A couple of points I would make. I remember you writing a post a while back about wanting to go back to being an emergency room doctor. As you may be aware, all of the patients who respond to CTL019 for pediatric acute lymphoblastic leukemia (ALL) at UPenn need monthly IVIG and they have no healthy B cells as a side effect of the therapy. I am not sure if they would be able to do a job with the type of contact an emergency room physician has with patients with infections, etc.
While a patient can be disqualified from a clinical trial based on previous therapies, there is little/no evidence that patients who previously did allo transplants have any extra toxicity if subsequently using CAR T cells. I could put up many links that show that, but I am just going to put up one in a minute that will show all the points I am making. Even better than worrying about future clinical trials and potential eligibility is not needing one at all.
As you know, pediatric ALL is the disease where patients have gotten the best response to CAR T cells directed at CD19. The therapy is a great success for these relapsed patients as it seems far superior to anything else available for relapsed ALL patients. However, the relapse rate is still fairly high, as 23 out of the 50 have an ongoing complete response (CR) without further therapy, if I am reading that correctly.
Here is a recent abstract from ASH that shows points I made above.
Source: SA Grupp et al, "Durable Remissions in Children with Relapsed/Refractory ALL Treated with T Cells Engineered with a CD19-Targeted Chimeric Antigen Receptor," ASH 2015 annual meeting 681 (link to abstract)
I am very excited about the future for CAR T-cell therapy, but the reality in myeloma is they do not know what the optimal target is, or if they will ever even find one.
As everyone knows from my posts, I think long-term quality of life should be a very important consideration for patients. Another point that should be very clear is that patients who get cured of blood cancer are cured from their initial lines of therapy prior to relapse. Bottom line in the area of immunotherapy currently, which is where patients who have already been diagnosed are:
Source: H Fujiwara, "Adoptive Immunotherapy for Hematological Malignancies Using T Cells Gene-Modified to Express Tumor Antigen-Specific Receptors", Pharmaceuticals, 2014 (full text of article)
Mark
Your finding a donor brings to mind the old saying, "Don't wish too hard for something, you may actually get it"!
A couple of points I would make. I remember you writing a post a while back about wanting to go back to being an emergency room doctor. As you may be aware, all of the patients who respond to CTL019 for pediatric acute lymphoblastic leukemia (ALL) at UPenn need monthly IVIG and they have no healthy B cells as a side effect of the therapy. I am not sure if they would be able to do a job with the type of contact an emergency room physician has with patients with infections, etc.
While a patient can be disqualified from a clinical trial based on previous therapies, there is little/no evidence that patients who previously did allo transplants have any extra toxicity if subsequently using CAR T cells. I could put up many links that show that, but I am just going to put up one in a minute that will show all the points I am making. Even better than worrying about future clinical trials and potential eligibility is not needing one at all.
As you know, pediatric ALL is the disease where patients have gotten the best response to CAR T cells directed at CD19. The therapy is a great success for these relapsed patients as it seems far superior to anything else available for relapsed ALL patients. However, the relapse rate is still fairly high, as 23 out of the 50 have an ongoing complete response (CR) without further therapy, if I am reading that correctly.
Here is a recent abstract from ASH that shows points I made above.
50 pts (94%) achieved a CR, including a patient with CD19+ T ALL, 3 did not respond. MRD measured by clinical flow cytometry was <0.01% at D28 in 45 responding pts and positive at 0.024%-1.1% in 5 pts, with 2 patients becoming negative by 3 mo with no further therapy. With median follow up 10.6 mo (1-39 mo), 29 pts have ongoing CR, with only 6 receiving subsequent treatment such as donor lymphocyte infusion or SCT, EFS is 70% at 6 mo (95% CI, 58-85%) and 45% at 12 mo (95% CI, 31-66%), RFS is 72% at 6 mo (95% CI, 59-87%) and 44% at 12 mo (95% CI, 30-65%), and OS is 78% at 12 mo (95% CI, 67-91%). CTL019 was detected by qPCR in the CSF of 46/47 pts and 4 pts with CNS2a ALL experienced a CR in CSF. 20 pts with a CR at 1 mo have subsequently relapsed, with 3 relapses occurring after subsequent therapy (i.e. SCT) and 13 with CD19(-) blasts. 4/5 pts previously refractory to CD19-directed blinatumomab went into CR with CTL019, 3 subsequently relapsed with CD19(-) disease.
Although T cells collected from the 35 pts who had relapsed after allo SCT were median 100% donor origin, no GVHD has been seen.
Persistence of CTL019 cells can be detected by flow cytometry and/or QPCR, and results in the pharmacodynamic marker of CTL019 function, B cell aplasia, which continued for 3-39 months after infusion in pts with ongoing responses. B cell aplasia has been treated with IVIg without significant infectious complications.
Source: SA Grupp et al, "Durable Remissions in Children with Relapsed/Refractory ALL Treated with T Cells Engineered with a CD19-Targeted Chimeric Antigen Receptor," ASH 2015 annual meeting 681 (link to abstract)
I am very excited about the future for CAR T-cell therapy, but the reality in myeloma is they do not know what the optimal target is, or if they will ever even find one.
As everyone knows from my posts, I think long-term quality of life should be a very important consideration for patients. Another point that should be very clear is that patients who get cured of blood cancer are cured from their initial lines of therapy prior to relapse. Bottom line in the area of immunotherapy currently, which is where patients who have already been diagnosed are:
In the context of antileukemia adoptive immunotherapy using T cells gene-modified to express leukemia antigen-specific receptors aimed at the cure of leukemia, the final goal is to induce durable protective immunity against disease progression in patients without collateral damage to normal tissues, and so far this has been achieved only for successful cases of allo-HSCT. For this purpose, various sophisticated approaches are currently being examined, and in the near future this treatment option might be able to take the place of allo-HSCT for patients with certain types of leukemia, especially those who are ineligible for allo-HSCT or for whom timely acquisition of a suitable donor is not possible.
Source: H Fujiwara, "Adoptive Immunotherapy for Hematological Malignancies Using T Cells Gene-Modified to Express Tumor Antigen-Specific Receptors", Pharmaceuticals, 2014 (full text of article)
Mark
-
Mark11
Re: Decision time - should I do an allo transplant?
Hello Tracy,
I have read your posts with interest and I applaud your bravery in the face of your disease. I am glad for you that you did find a 'match' for an allogeneic transplant, even if you do not use that. At least that shows that the international matching system is working.
It seems that there are a wide range of responses medically to an allogeneic transplant. They seem to be used more in lymphomas and leukemias, where an autologous transplant cannot be done.
Personally, I have known of two patients who had allo transplants. One was the brother of a walking friend, who had another blood cancer from myeloma, and unfortunately he did not survive it. His sister was just horrified that I had had an auto transplant, and I had to explain that to her. Six years later, she is surprised that I am walking so well!
Another friend I met in the myeloma world survived for 14 years after her allo transplant, which was very good considering that back when she was diagnosed there were not the modern drugs available. She was not eligible for any clinical trials either.
So I know that this is a difficult decision, but apart from clinical trials, there are good treatments available now in case of a relapse after an allo transplant.
Wishing you all the best, and praying for a cure for you and all of us, actually!
I have read your posts with interest and I applaud your bravery in the face of your disease. I am glad for you that you did find a 'match' for an allogeneic transplant, even if you do not use that. At least that shows that the international matching system is working.
It seems that there are a wide range of responses medically to an allogeneic transplant. They seem to be used more in lymphomas and leukemias, where an autologous transplant cannot be done.
Personally, I have known of two patients who had allo transplants. One was the brother of a walking friend, who had another blood cancer from myeloma, and unfortunately he did not survive it. His sister was just horrified that I had had an auto transplant, and I had to explain that to her. Six years later, she is surprised that I am walking so well!
Another friend I met in the myeloma world survived for 14 years after her allo transplant, which was very good considering that back when she was diagnosed there were not the modern drugs available. She was not eligible for any clinical trials either.
So I know that this is a difficult decision, but apart from clinical trials, there are good treatments available now in case of a relapse after an allo transplant.
Wishing you all the best, and praying for a cure for you and all of us, actually!
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
32 posts
• Page 1 of 4 • 1, 2, 3, 4
Return to Treatments & Side Effects