Anyone with AML? If so please let me know anything helpful.

Posted by babshere1 @babshere1, Feb 23 2:53pm

79 y old female with aml. I started chemo but after 3 infusions I became sick hallucinating and breathing and chest pain. Of course stopped chemo. I now am without treatment. Any suggestions not overextended treatment by oncologists. Need help.

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Yes - he has an excellent quality of life - it is a year now but he has done great. He was just recently at my door, asking us to get behind a mutual friend that wants a seat on our HOA Board of Directors. (We agreed - he was quite persuasive )
I see in our monthly HOA newspaper that he teaches water aerobics twice a week. He and some other neighbors and friends belong to a band and they play at various events in our area.
He and his wife have a dog (friends cared for the dog at their own home while the owners were in Houston) and a large home. It has a separate house and I hear the band practicing out there. I also see him relaxing in their yard.
He and his wife own other properties that they manage; they have kids and grand kids out of State that they visit.
He has no GVHD at this time; he said that all the cells in his body are his donor's - probably not "quite accurate" - but he states he has absolutely no cancer cells in his bone marrow.
GVHD was a major concern as he approached treatment as his donor was not a "perfect" match; his wife was terrified. He did have moderately serious GVHD "along the way." I never heard how bad it was. He was in Houston at the time but I heard that MD AnDerson (mda) did a fantastic job of managing it.
He and his wife had gone out of our city to Houston to have his treatment at MDA. They rented lodging and stayed there so the "ups and downs" of his six month treatment are vague to me; also his wife did not want to share them with people back home. He and I exchanged a few emails and I mainly had conversations with a very close friend of his wife's. (Interestingly, his wife set up the first appointment at MDA and I did step her through the process of working with MD Anderson and the local doctors. She told mutual friends how smoothly it all went. It wasn't "me" - it was MDA. They facilitate thousands and thousands of these referrals.)
The local oncologist advised against having the stem cell transplant. Friends here that I spoke with were diplomatic but they were largely against it. He was given three to six months to live by the local health care physicians. He wanted to live.
He came to me because we had (and still have) a patient advocacy firm. At one point, our patients were largely transplant patients; we only worked with the most experienced centers that could demonstrate (after grueling multiple week transplant center site visits by our team) that they knew and followed the best practices for a given illness. (We work with very few patients now who have both chronic and acute issues and it is much different.)
In our experience MD Anderson in Houston has been and still is one of those excellent centers (I have a cousin there now and also a "dear friend of a friend" - neither has a hematological cancer); MDA was experienced with his type of AML (acute myelomonocytic leukemia). Over time we have had numerous patients there that had what only could be called miracle outcomes.
But MDA is very honest with patients: They tell it like it is, describing they realities of what patients can and do experience. It is not for the faint of heart.
I am telling you all this in a somewhat/very disorganized way because you should have your stem cell transplant at a center that is optimally experienced in your type of AML. Geography should not be a concern. You need to be an expert in your type of AML so you can ask the right questions. Ask to see their data. Understand if and how others do it differently.

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Profile picture for blakeman @blakeman

You did not say which drug you got. But the standard treatments for AML use drug combinations. There are several to choose from. And Drs also give some extra drugs to protect you form infections and altered biochemistry. You need a specialist to fine tune all of these prescriptions for you!
I am 78 y.o.; diagnosed last fall. Began Azacitidine + Venetoclax as my chemo combo in December. For me, the rx worked very quickly to reduce my blast counts; I went into "morphological remission" in only 3 weeks! And I only became mildly nauseous most days (that treated easily with rx). The catch is that you must repeat rounds of these drugs every 4-6 weeks. But it is only 5 days of IV infusions at the start of each cycle. These are simple, non-traumatic IVs running into my port (usually about 15 minutes total). This is doubled up with pills of Venetoclax, those taken for 2 or maybe 3 weeks straight. After that a 2 week break until the next cycle begins. Some people get sick in early months of treatment: more do not. Ven/Aza tends to be the treatment used for older people. It must be continued indefinitely to keep the AML at bay. Look for a center which knows how to handle these drugs. You may kick your AML to the ground for a few years, at least.
Good luck!

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@blakeman I also was on the Az-Ven unfortunately I did get terribly sick breathing heart and hallucinations! My Dr didn’t offer any other solution.

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Profile picture for babshere1 @babshere1

@blakeman I also was on the Az-Ven unfortunately I did get terribly sick breathing heart and hallucinations! My Dr didn’t offer any other solution.

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@babshere1 - I am so sorry that this drug combo did not work well for you!! I hope that another doctor can find a better Rx choice, or a different dose. You will be in my thoughts.

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Profile picture for jbw165 @jbw165

@hsminc do you know what his current quality of life is like? Does he have gvhd and if so, how serious? I’m 74, and trying to decide whether to have a stem cell transplant. Thanks

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Hi @jbw165 This is a big decision for you whether to go forward with a stem cell transplant. For many, including myself, they can be an opportunity for a 2nd chance at life when there are no alternatives remaining. As with any transplant, there may be risks with those rewards, including the potential for gvhd. There have been advances since my transplant 7 years ago which help to prevent many of the more serious graft vs host issues. Almost every patient will have some level of gvhd. But most are handled quickly by our transplant teams.

If you don’t sharing a little more about yourself, what led you to the possibility of a bone marrow transplant? Was it AML? Have you been evaluated by a transplant team?

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Profile picture for Lori, Volunteer Mentor @loribmt

Hi @jbw165 This is a big decision for you whether to go forward with a stem cell transplant. For many, including myself, they can be an opportunity for a 2nd chance at life when there are no alternatives remaining. As with any transplant, there may be risks with those rewards, including the potential for gvhd. There have been advances since my transplant 7 years ago which help to prevent many of the more serious graft vs host issues. Almost every patient will have some level of gvhd. But most are handled quickly by our transplant teams.

If you don’t sharing a little more about yourself, what led you to the possibility of a bone marrow transplant? Was it AML? Have you been evaluated by a transplant team?

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Thanks, so much for responding, Lori! Yes, I have AML, am 74 years old.
I’m trying to decide whether to do the sct or not. I’m in good health, but
I’m concerned that I will come out of the process significantly weakened or
frail and that my quality of life would be compromised. Right now, I’m in
remission and feeling pretty decent physically. My mental state is a
struggle because of this decision and it’s implications.

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