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Re: Mini allogeneic transplant after autologous transplant

by Mark11 on Tue Oct 18, 2016 10:38 am

Hi DeanUK,

You wrote:
When I was at Kings, I got talking to 2 patients with myeloma. One had an allogeneic transplant 8 years ago and has just relapsed, I did ask him if he was in complete response before the allogeneic transplant went ahead, and he did say "No," as his myeloma was getting out of control and he had no choice. Maybe that's why he relapsed as he was not in complete response (CR)? The second patient is 10 years since his first stem cell transplant only and no signs. I thought get your head around that then Dean. The world of myeloma is unbelievable. You just have to go with what you think is right for that time and it's horrible that we have to make life-changing decisions. Myeloma is such a unique disease. This is one thing I have learnt since my diagnosis.

I can relate 100% with that post. I kept thinking that I only had one chance to be cured and that was to do the allo transplant early. What I did was I looked at how patients lived who were alive beyond 5 years and I decided that I did not want to live like the patients who were trying to "control" the disease. I think the reason you see younger patients going out of their way to look at the negatives / look at data that is not applicable to a patient doing the transplant in re­mission in 2016 is that they would like to have the outcome the allo can provide (cure with excellent quality of life) but are trying to justify in their own minds why they are not having that outcome if they are a young patient with a donor. I thought I would feel worse if I relapsed and had not done the allo than if I had a problem from the transplant. Allos are for patients that think long term. I do not worry about short term (3-5 year) studies.

Patients that are not in remission are more likely to relapse than those that are at the time of transplant. That has been known since the 1970's. It is only recently that myeloma patients had a good chance to get into remission prior to doing the allo. Acute leukemias have had drugs that could get patients into remission for decades, that is why so many more of them are cured via allo transplant. Basically you use drugs to de-bulk and than you use the immuno­therapy of the donor immune system to kill off the cell(s) the drugs do not kill and than the donor immune system maintains your response.

I view myself as being in the same position as someone that never had myeloma – I have no sign of the disease and I have a healthy functioning immune system to maintain it. That is basically what the studies JimNY posted show – patients that are not responding / do not have good drugs to get them into remission prior to the transplant are not likely to have an optimal outcome when doing an allo.

It was an easy decision for me because my overall survival was likely to be in the 18-month range. I see more upside today to doing an early allo than I did 6 years ago. It is known that Revlimid has enhanced activity in patients who previously did allos. There is no data yet, but it is very likely Darzalex and Empliciti will work better for a patient who has done an allo since they have immunomodulatory properties.

Good luck with your decision and you are doing the right thing in seeking out patients who pre­viously did one as opposed to patients who have not done one. I was fortunate to have a doctor who offers her patients the opportunity to have the best outcome and does not make them settle for going down the "control" path with constant relapses, reduced quality of life, etc.

I just have to say it one more time. I cannot understand how a therapy that has cured thou­sands of blood cancer patients and patients with sickle cell disease and other auto immune dis­orders is viewed in a negative way. Call me crazy, but I view curative immunotherapy in a very posi­tive light.

Mark

Mark11

Re: Mini allogeneic transplant after autologous transplant

by JPC on Tue Oct 18, 2016 4:16 pm

Hello Dean:

I sincerely wish you the best. I admire your decisiveness. Having a hard look at some of the numbers can be scary to many of us (though when we look at the numbers of the procedure, the other side of the coin is how bad might the cancer be). I sincerely admire those who go this route, and have the sense of fearlessness in dealing with this aggressively, and for a hopeful future. Good luck to you and best regards.

JPC
Name: JPC

Re: Mini allogeneic transplant after autologous transplant

by JPC on Tue Oct 18, 2016 5:01 pm

Hello JimNY and Mark:

Thank you, JimNY, for pulling those references, I have read a lot of studies, but digging them up on short notice is not my forte, and I am not as good as yourself and Mark.

As I mentioned, the population in the US who opt for upfront allo (presumably in the form of induction - auto-allo) for multiple myeloma is quite small. So small that there are no real studies on it with hard data on outcomes. I do not believe such a study exists. Some center who do allos publish their results, but since it is outside of a single clinical trial, it would be random, and centers could potentially self select what and when they report.

So my numbers are based on my reading of several studies on the subject, some going back many years, some on multiple myeloma patients, but also with respect to treatment-related mortality on data on allos for other conditions.

Mark, you wrote:
Wrong.

Actually, based on the paucity of data, I think the numbers are reasonable. Some of the studies I refer to you have posted along the way, in particular the recent thread on depth of response. For treatment-related mortality, I think actually 20% is on the low side. You occasionally see studies with a little lower than 20% for allos, but mostly it's above 20%. You could argue that it's higher.

I think your point on multiple myeloma data for relapse is valid. I think the data on allos for multiple myeloma includes salvage allos. Some years back, that was a preferred treatment, but as you mentioned, they may help, but are much less likely to get the very long term remission.

For relapse versus cure, that is a bit more tricky. Just so you understand, the concept that the chance of getting cured is about equal to the one year mortality was one that was explained to me by one of the experienced doctors we spoke to in New York, when we were getting second opinions. I did not dream that up. You recently posted a study quoting 5 year mortality in the range of 50%. However, of that 50%, some will be fortunate to be in long-term remission, but not all of them, some of them would be in relapse. I guesstimated 20% would be "cured", but I think the numbers could reasonably instead of one in five, be something a little higher, like one in 4 (25%), but I would be very surprised if it was higher than 1 in 3.

My opinion, as you stated Mark, is that very likely, if you are young, in good health (otherwise outside of the multiple myeloma), and get to a complete remission, that the "curve" for the allo probably does get shifted, you lower your chance of the bad side effects, and potentially increase of a long term remission. That certainly makes sense to me and is a logical argument, but I have not seen data to that effect.

I would also be interested to see hard data on whether or not, as treatments advance, allos are getting "safer" over time. Are they lowering the rate of treatment-related mortality by better dealing with the GVHD? I do not know. I hope that is the case. For autos, about 15 to 20 years ago, they quoted 1 year mortality of 2% to 4%. Today, it is the range of 1% for the high volume centers.

I am very happy that the option exists for patients interested in it. It is another tool in the toolbox. As you said, however, its not for everyone. If you had more current data on the risk vs reward, I would be happy if you shared it. Good luck to you, and I hope your remission continues indefinitely. You have been through a lot.

JPC
Name: JPC

Re: Mini allogeneic transplant after autologous transplant

by Mark11 on Wed Oct 19, 2016 2:14 pm

Hi JPC,

I am not familiar with these studies you are referring to. Could you start a new thread and post the links to them? I would be surprised if they referred to patients doing their transplant in first complete response. I am not interested in studies that include relapsed patients.

This thread is actually for the benefit of DeanUK. It is not about allo transplant in general. As Dr. Richardson mentioned in his paper, old studies where patients did not have novel agents prior to transplant would not be applicable in cases like mine or DeanUK. It has been known since the 1970's that blood cancer patients in first complete response like I was and DeanUK are have lower mortality risk and higher chance of benefiting from the procedure. Here is a recent myeloma study showing this.

"Results - Twenty-seven (35.1%) patients had high-risk cytogenetics at diagnosis (t (4:14), 17p deletion, chromosome 1 abnormality, or t (14:16)). All of patients except 1 had prior auto transplant. On multivariate analysis, older age (hazard ratio [HR], 1.055; 95% confidence interval [CI], 1.001 = 1.11; P = .04), less than complete remission (CR) at allo-HCT (HR, 4.3; 95% CI, 1.3-14.1; P = .006), and cytomegalovirus reactivation (HR, 3.2; 95% CI, 1.38-7.6; P = .002) were associated with higher mortality risk. Less than CR at allo-HCT was also associated with higher risk for non-relapse mortality (HR, 5.8; 95% CI, 1.3-26.3; P = .02). There was no difference in OS or PFS between high-risk and standard-risk cytogenetics. No difference in OS and PFS was seen in those who had morphological complete response regardless of the minimal residual disease status.

Conclusion - Allo transplant benefited younger patients and those in CR at the time of transplant. The adverse effect of high-risk cytogenetics may be overcome by the allo-HCT. "


Reference:

https://www.ncbi.nlm.nih.gov/pubmed/27160644

The reality is most myeloma patients die from relapsed myeloma and non relapsed mortality from infections, etc. It is also reality that patients that have successful allo transplants are least likely to die from myeloma or NRM over the long term. Two examples of this are great contributors to our forum who recently passed away - Pat K and Eric H. Both died from non relapsed mortality and neither did an allo transplant. If you do not think myeloma patients die from NRM you are mistaken. I posted my blood work from last December in another thread.

https://myelomabeacon.org/forum/quality-of-life-t6442-30.html

While my risk of NRM was a little higher in the short term, I think it is safe to state most myeloma patients are at a higher risk for infection / NRM at this time than I am. I think long term, not short term.

The reality is DeanUK may have a chance to be cured of his disease. It is up to him if he chooses to do the transplant or not. I cannot understand why you are so insistent on trying to overestimate the risks of the procedure and underestimate his chances of being cured. In my opinion having relapsed myeloma is much likely to cause a myeloma patient to die than side effects from an allo transplant.

DeanUK is not an average patient. He is a younger patient that would be doing his transplant in CR1. Just because the center you went to estimated your wife's chances of being in the NRM group from doing the transplant at their center was high does not mean another patients risk is high. My doctor though my chance of dying from NRM was in the 5% range. I really did not care what the "average" patients risk is. As you always say, the key is seeing a specialist and going to doctor that gives you a chance for the best outcome.

Mark

Mark11

Re: Mini allogeneic transplant after autologous transplant

by Dean UK on Wed Oct 19, 2016 4:10 pm

Thanks again Mark, JPC, and Ian.

100% I'm ready to go early with my allogeneic transplant after my autologous stem cell transplant. My mind has been made up. Still waiting for the doctors to confirm. I just hope they give me the green light to go early.

Under the UK NHS, you have to with the doctors' decision to a certain point, unless you're a millionaire and can pay private.. If they do decide to put it on hold, I will be asking why, as I know of at least two other cases where an early allo was done. If it's been done for them, why not for me?

Except for my multiple myeloma, I'm in good health (as far as I know anyway). So thanks again. It's all a great help reading the posts and as soon as I hear I will put a post out to let you know.

Cheers.
Dean

Dean UK
Name: Dean
Who do you know with myeloma?: Myself
When were you/they diagnosed?: April 2016
Age at diagnosis: 41

Re: Mini allogeneic transplant after autologous transplant

by Mark11 on Sat Oct 22, 2016 11:42 am

Hi DeanUK,

Good luck moving forward. Hopefully the allo will get approved if that is the route you still want to go after the auto. Positive vibes being sent that you will have a donor that is available when you are scheduled to do the allo (if approved). It really is a unique procedure, especially for someone like me that needs an unrelated donor. It is a special feeling knowing that a stranger is willing to donate to help you be cured of your cancer. Hopefully everything will go smooth for you as you go down the road. Fortunately I can now look back on 2010-11 as just a bad year for me medically that only left me with some bone damage that has not been difficult to manage.

Mark

Mark11

Re: Mini allogeneic transplant after autologous transplant

by Dean UK on Mon Oct 24, 2016 3:45 pm

Hi Mark

Great to hear how well life has gone. Keep it up mate.

This Friday I will get their decision. I've spent hours doing my research, talking with other patients and family and I feel this is the route for me. I will be very upset if I don't get the green light. Fingers crossed. Will keep you updated and thanks again.

Regards,
Dean

Dean UK
Name: Dean
Who do you know with myeloma?: Myself
When were you/they diagnosed?: April 2016
Age at diagnosis: 41

Re: Mini allogeneic transplant after autologous transplant

by Dean UK on Tue Nov 01, 2016 6:54 pm

Finally have an update.

I have been informed that the allo after my autologous stem cell transplant is looking more likely, but the team still won't confirm until after the autologous transplant. All they want me to do at the moment is to get focused on getting through the auto transplant first..

They are thinking of doing the allo early as they don't have a FISH test result and, as my myeloma is IgA, apparently you have a 50% chance of being high risk. So some doctors on the team want to treat me as high risk, and some don't agree with the risk factor as IgA is less common, so that puts the statistics out. Hence why I still don't have a decision. All these experts and they all seem to have different views..

I also was told the statistics if anyone is interested:

Not many have been done in the UK, but the info I given was this: 30% cure, 20% death, 50% relapse at some point. Only last few years they have been doing allo in complete response (CR) after autologous transplants as frontline treatment, so it's too early to give me results.

So now im gearing up for the auto transplant next week, then I see where I go once I get through it and start feeling better.

The joys of myeloma. I feel more confused after my meeting with the doctors . I just want them to be positive and say, "Dean, this is what we are doing". Just not getting that at the present.

Will keep this thread updated.

Regards,
Dean

Dean UK
Name: Dean
Who do you know with myeloma?: Myself
When were you/they diagnosed?: April 2016
Age at diagnosis: 41

Re: Mini allogeneic transplant after autologous transplant

by JPC on Tue Nov 01, 2016 8:17 pm

Hello Dean:

I do think its appropriate to focus on the auto, as your doctors advised you. I fully appreciate your comment, "The joys of multiple myeloma"! It is very confusing. I think its important that you had this conversation with your medical team. I do think that the doctors (if they are good and fair, and I assume that yours are) will tend to somewhat overstate the risks, and I think that is appropriate and a conservative approach.

As you are young and healthy, your odds may indeed be better than the "average" patient. You do not have to make a "final" decision on an allo, at this point, when you are still looking to go through your auto. Please keep us updated, and the best of luck to you. JPC

JPC
Name: JPC

Re: Mini allogeneic transplant after autologous transplant

by Dean UK on Wed Nov 02, 2016 11:23 am

Thank you JPC.

I just find it so bad that a FISH test was not done from the start. Not having that inportant part of the puzzle is making it hard for the team to make life-changing decisions. Also, since diagnosis, I want to know, but still don't.

The majority of patients don't have a FISH test in the UK from diagnosis, which I personally think is bad. The UK way of thought is, if you relapse early, then you're high risk.. One doctor told me some patients who are high risk from a FISH test can still have good remissions, and others who are not high risk can still have short remissions. So their way of thought is time will tell on how your myeloma will behave. Also, I think with this decision it's down to cost on our National Health Service (NHS).

Thanks again,
Dean

Dean UK
Name: Dean
Who do you know with myeloma?: Myself
When were you/they diagnosed?: April 2016
Age at diagnosis: 41

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