Well, doc, my doc gave me 6mo "and it might not be a good six months." So, it was 'relatively' easy to choose to go the allo-SCT route. This was after being dx'd 8yrs prior with low risk MDS. By the time 8yrs later when I was SOB at rest and went through the low intensity azacitidine regimen that was 'successful' (= "well, you did well. Now it's time for the SCT" lol), I had lived a good life for 50+ yrs (including the 8yrs after dx.) Kids were grown.
I figured, "today is a good day to die" and I asked the doc how I would leave the hospital after the transplant? Would I be rolled out in a w/c? "No, you'll walk out," she said. And, I trusted her. She had earned my trust by this time because she talked straight to me - I had told her to do that. "Tell me what you think and why and I'll make my own decisions," I had told her. I said, "Why will I walk out?" And, she replied - having gotten to know me with very (very) straight discussions about how I wanted to live and die - "Because I'll tell PT to kick your ass into shape [that's part of our transplant program]." That sold me. (As well as the "it might not be a good six months" if I chose hospice instead. I also was no stranger to research papers and medicine and life and death - I prepared myself. I don't trust 'you' doctors and professors all that much with these decisions. Patients need to think of docs and healthcare as tools. (I don't mean this in a derogatory way - it's reality and if we don't like it, that's too bad.) It's up to us to make our decisions. I have complications from the a-SCT and intense radiation/chemo to kill my bone marrow and hopefully the dysplastic cells. Everyday I wonder when the complications (or new ones) are going to lower my performance and decrease QOL. Maybe I'll update you all when those days come.
People are going to have to take responsibility for these decisions and stop forcing them on others, including onto the docs, nurses, allied health, insurance execs, hospital execs, politicians. Everyone needs to do their jobs and, thankfully, most of the healthcare workers, flawed as we are, are doing good jobs (not so much the business people.) But, perhaps most of all, the patients have to do their jobs. Both before and after being confronted by the big forks in the road. And, those decision points ALWAYS come.
No, this isn't the situation that you described about 20-40% AML cure rate without allo-SCT, but maybe there's something here to help you and your patients make the decision for or against the a-SCT. There are so many 'variables' or 'inputs' or considerations going into the decision.
Please, give people a reasonable range of risk vs toxicity from your experience and the available competent research conclusions. That's your area of expertise. How people live their lives is their expertise. There are no guarantees.
What a tough decision and even tougher conversation. Just adding a reminder to perform genetic testing on these patients. A negative rest result will turn out to be unhelpful and inconclusive, but if a patient has a positive genetic test result and therefore a genetic susceptibility for recurrence, it may give a better idea of the risks for recurrence and therefore make a case for Allo-HSCT (or not).
At least you get an hour! Sometimes I feel I’m forced to have these types of conversations in 15 minutes.
Personally, in my practice I don’t like to think I make “recommendations.”
Sure I can tell a patient what to take or what I would do in a situation. But I’ve found that doesn’t really work and doesn’t help build trusting relationships, which i believe is a foundation for healing.
I think of my work -- more as presenting a menu of suggestions and letting the patient choose the treatment plan that will work for them.... this allows the patient to feel heard, trusted and committed. It also stacks any potential belief effects in their favor. I educate as much about risks/benefit as possible. Safety is the primary filter and I would never facilitate something I did not think was safe, evidence based or *way* outside a reasonable standard of care.
In this model, patients are responsible for the choices they make. To me, this is shared decision making and patient empowerment. I’m sure there is some problems and edge cases though.
Could you not give every patient the right to choose whether they wanted to accept the risks of or refuse transplantation? Maybe there is a patient that doesn’t want it -- but that you would transplant based upon experience. And maybe that patient would be just fine without it.
Another thought -- there is a layer of ego/hubris here as well. You can only do the best you can. You cannot be overly attached to outcomes. Part of this game (aka life and practice of medicine) is making mistakes when you acted based upon the best evidence and followed standard of care. There is just some stuff we can’t know and will never be able to understand.
Why is there no desire to understand what causes these afflictions? Because there is no money in it plain and simple. Modern medicine is no better than voodoo.
I'm not sure I see the logic of an allo-BMT on a patient in remission such as the 22 yr old mentioned at the top of the article. Surely, the appropriate standard should be to wait until relapse had occurred and then proceed to an allo-BMT (or an appropriate 2nd line therapy). To carry out an allo-BMT before that, one would need convincing RCT evidence that the early implementation of an allo-BMT resulted in either prolonged survival or a cure.
Aaron, I do not have twitter and my great frustration with Substack is it does not give us author emails...very frustrating. You raise an interesting issue vis-a-vis determining whether an apparently disease free patient is really disease free or not. I am a hematologist, but work with a company that has perhaps the world's most sensitive in-blood detector of "bad" cells -- there is an obvious investigation to be done here to see if we can identify the 20%. The technology is well demonstrated with CTCs for prostate and MBC, but would love to find a way of improving discrimination on BMTs.
Since you do have my email, drop me a line if this is of interest and we can explore a little.
I too, over the course of maybe 6 weeks experienced increasing fatigue and SOB. I was admitted after a routine urgent care visit 4 yrs ago w a hemoglobin of 7...that is all I remember. I was 69 and a very fit elder working FT as an NP. I had all the same treatments including an anonymous donor transplant and today I am fully functional w no residual issues through no fault of my own. The medical team at Heme Onc and BMT team at Boston’s BIDMC brought me through this. I am grateful every day of my life and thankful to the entire team every day of my life from maintenance and dietary to nursing and medicine. I am grateful that I live in a country where folks like Sensible Medicine are always questioning the conventional wisdom. I am truly blessed
Appreciate your struggle, and your compassion. Thank you.
I think i would reverse the question to the young patient to discern what is his/his family’s preference.
And i would be in every data base i could find for alternative treatments, because there are almost always alternatives, even though they may sound ridiculously improbable.
Well, doc, my doc gave me 6mo "and it might not be a good six months." So, it was 'relatively' easy to choose to go the allo-SCT route. This was after being dx'd 8yrs prior with low risk MDS. By the time 8yrs later when I was SOB at rest and went through the low intensity azacitidine regimen that was 'successful' (= "well, you did well. Now it's time for the SCT" lol), I had lived a good life for 50+ yrs (including the 8yrs after dx.) Kids were grown.
I figured, "today is a good day to die" and I asked the doc how I would leave the hospital after the transplant? Would I be rolled out in a w/c? "No, you'll walk out," she said. And, I trusted her. She had earned my trust by this time because she talked straight to me - I had told her to do that. "Tell me what you think and why and I'll make my own decisions," I had told her. I said, "Why will I walk out?" And, she replied - having gotten to know me with very (very) straight discussions about how I wanted to live and die - "Because I'll tell PT to kick your ass into shape [that's part of our transplant program]." That sold me. (As well as the "it might not be a good six months" if I chose hospice instead. I also was no stranger to research papers and medicine and life and death - I prepared myself. I don't trust 'you' doctors and professors all that much with these decisions. Patients need to think of docs and healthcare as tools. (I don't mean this in a derogatory way - it's reality and if we don't like it, that's too bad.) It's up to us to make our decisions. I have complications from the a-SCT and intense radiation/chemo to kill my bone marrow and hopefully the dysplastic cells. Everyday I wonder when the complications (or new ones) are going to lower my performance and decrease QOL. Maybe I'll update you all when those days come.
People are going to have to take responsibility for these decisions and stop forcing them on others, including onto the docs, nurses, allied health, insurance execs, hospital execs, politicians. Everyone needs to do their jobs and, thankfully, most of the healthcare workers, flawed as we are, are doing good jobs (not so much the business people.) But, perhaps most of all, the patients have to do their jobs. Both before and after being confronted by the big forks in the road. And, those decision points ALWAYS come.
No, this isn't the situation that you described about 20-40% AML cure rate without allo-SCT, but maybe there's something here to help you and your patients make the decision for or against the a-SCT. There are so many 'variables' or 'inputs' or considerations going into the decision.
Please, give people a reasonable range of risk vs toxicity from your experience and the available competent research conclusions. That's your area of expertise. How people live their lives is their expertise. There are no guarantees.
Very tough. For both of you.
What a tough decision and even tougher conversation. Just adding a reminder to perform genetic testing on these patients. A negative rest result will turn out to be unhelpful and inconclusive, but if a patient has a positive genetic test result and therefore a genetic susceptibility for recurrence, it may give a better idea of the risks for recurrence and therefore make a case for Allo-HSCT (or not).
Coincidentally I've just read a very recent RCT published in JAMA about the exact question of transplantation in intermediate-risk AML.
https://jamanetwork.com/journals/jamaoncology/article-abstract/2801295?guestAccessKey=ff239124-36f9-4afb-92c0-fe4e323cfcde&utm_source=silverchair&utm_medium=email&utm_campaign=article_alert-jamaoncology&utm_content=olf&utm_term=020923
It seems it has a worse mortality trend. Thoughts?
At least you get an hour! Sometimes I feel I’m forced to have these types of conversations in 15 minutes.
Personally, in my practice I don’t like to think I make “recommendations.”
Sure I can tell a patient what to take or what I would do in a situation. But I’ve found that doesn’t really work and doesn’t help build trusting relationships, which i believe is a foundation for healing.
I think of my work -- more as presenting a menu of suggestions and letting the patient choose the treatment plan that will work for them.... this allows the patient to feel heard, trusted and committed. It also stacks any potential belief effects in their favor. I educate as much about risks/benefit as possible. Safety is the primary filter and I would never facilitate something I did not think was safe, evidence based or *way* outside a reasonable standard of care.
In this model, patients are responsible for the choices they make. To me, this is shared decision making and patient empowerment. I’m sure there is some problems and edge cases though.
Could you not give every patient the right to choose whether they wanted to accept the risks of or refuse transplantation? Maybe there is a patient that doesn’t want it -- but that you would transplant based upon experience. And maybe that patient would be just fine without it.
Another thought -- there is a layer of ego/hubris here as well. You can only do the best you can. You cannot be overly attached to outcomes. Part of this game (aka life and practice of medicine) is making mistakes when you acted based upon the best evidence and followed standard of care. There is just some stuff we can’t know and will never be able to understand.
After I wrote my piece, I read yours. Such similar thinking.
Why is there no desire to understand what causes these afflictions? Because there is no money in it plain and simple. Modern medicine is no better than voodoo.
I'm not sure I see the logic of an allo-BMT on a patient in remission such as the 22 yr old mentioned at the top of the article. Surely, the appropriate standard should be to wait until relapse had occurred and then proceed to an allo-BMT (or an appropriate 2nd line therapy). To carry out an allo-BMT before that, one would need convincing RCT evidence that the early implementation of an allo-BMT resulted in either prolonged survival or a cure.
Appreciate this post Dr G. I enjoy your twitter as well.
Aaron, I do not have twitter and my great frustration with Substack is it does not give us author emails...very frustrating. You raise an interesting issue vis-a-vis determining whether an apparently disease free patient is really disease free or not. I am a hematologist, but work with a company that has perhaps the world's most sensitive in-blood detector of "bad" cells -- there is an obvious investigation to be done here to see if we can identify the 20%. The technology is well demonstrated with CTCs for prostate and MBC, but would love to find a way of improving discrimination on BMTs.
Since you do have my email, drop me a line if this is of interest and we can explore a little.
Thanks
I too, over the course of maybe 6 weeks experienced increasing fatigue and SOB. I was admitted after a routine urgent care visit 4 yrs ago w a hemoglobin of 7...that is all I remember. I was 69 and a very fit elder working FT as an NP. I had all the same treatments including an anonymous donor transplant and today I am fully functional w no residual issues through no fault of my own. The medical team at Heme Onc and BMT team at Boston’s BIDMC brought me through this. I am grateful every day of my life and thankful to the entire team every day of my life from maintenance and dietary to nursing and medicine. I am grateful that I live in a country where folks like Sensible Medicine are always questioning the conventional wisdom. I am truly blessed
Appreciate your struggle, and your compassion. Thank you.
I think i would reverse the question to the young patient to discern what is his/his family’s preference.
And i would be in every data base i could find for alternative treatments, because there are almost always alternatives, even though they may sound ridiculously improbable.
You should stop CAUSING AML in the first place. I know it's a radical idea.
Role of anti-carbonic anhydrase 2 antibodies induced by vaccine antigens, in the etiology of acute myeloid leukemia and other malignancies
https://doi.org/10.5281/zenodo.3534442
Thank you for bringing this enzyme and its inhibition to my attention. What about induced CA-2 antibodies vis-a-vis metabolic acidosis and CKD?
I have not studied CA-2 antibody role in metabolic acidosis and CKD.
How strange that he would suddenly wake up like that. I wonder what could have caused it.
The usual suspect.
Role of anti-carbonic anhydrase 2 antibodies induced by vaccine antigens, in the etiology of acute myeloid leukemia and other malignancies
https://doi.org/10.5281/zenodo.3534442
Indeed.
Life changing decisions have to be made every day.
I can't even imagine how difficult this is for each doctor who is trying to make a decision to help & not hinder another human being.