Acute Myelogenous Leukemia (AML) Support Group
Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.
Today is the first day we haven't spent much it on the road or at various hospitals. U of C is still consulting today and getting back to us but based on the options they outlined versus what Loyola said, Keir feels he wants to go with Loyola. Loyola is also more than an hour closer to our home which I understand is important. I think for Keir, the major factor in his choice was also the fact that Loyola was recommended by his hem/onc, whom he trusted implicitly and whom he feels went to bat for him in this whole mess with the transplant team.
He will have to do a reduced conditioning regime of some degree, which was a disappointment as we understand it may be associated with a higher degree of relapse. Chemo + full body irradiation. Any survivors out there who did reduced intensity, please speak up! I'd love to get some extra encouragement. I am trying (still) to come to terms with the fact that there are no certainties with this illness. Keir's cardiac MRI showed his e/f at 35 which is low but an improvement over the 25-30 his test two weeks ago showed at Rush. The meds seem to be helping and he's feels very good.
The .9 blasts in his blood came back as myeloid cells of some sort and not leukemic on the flow cytometry. I don't have the report in front of me so I can't be more specific; I was unable to write it down as I was a passenger en route to another hospital with Keir when the call came through.
The main issue now is timing. If they can't pull this together very quickly he has to have more chemo, which does worry me a bit only because I know every round can bring more complications....so hoping that won't be the case. But better that than risk relapse.
Today is a bittersweet one. He was supposed to be getting his cells today - yesterday was his actual birthday. Keir is committed to getting better, to getting a transplant, and to getting through this. I apologize if I sound unappreciative of the good news we got on many fronts. I am very run down at the moment, physically and emotionally. We could really use prayers for some smooth sailing. I am also trying to find a balance between being pro-active on making sure this gets set up and being a pest to the Loyola staff. That's a hard one for me. They seem extremely competent, and saw us on short notice, have already gotten the bone marrow transplant access transferred and got him in to see the radiation oncologist.
One of the hardest parts is leaving the people (staff) at Rush who WERE good and on whom we relied during all this in the past four months. I know others of you on here switched hospitals. Did you have the same apprehension? It's so hard to "start over.'
He will have to do a reduced conditioning regime of some degree, which was a disappointment as we understand it may be associated with a higher degree of relapse. Chemo + full body irradiation. Any survivors out there who did reduced intensity, please speak up! I'd love to get some extra encouragement. I am trying (still) to come to terms with the fact that there are no certainties with this illness. Keir's cardiac MRI showed his e/f at 35 which is low but an improvement over the 25-30 his test two weeks ago showed at Rush. The meds seem to be helping and he's feels very good.
The .9 blasts in his blood came back as myeloid cells of some sort and not leukemic on the flow cytometry. I don't have the report in front of me so I can't be more specific; I was unable to write it down as I was a passenger en route to another hospital with Keir when the call came through.
The main issue now is timing. If they can't pull this together very quickly he has to have more chemo, which does worry me a bit only because I know every round can bring more complications....so hoping that won't be the case. But better that than risk relapse.
Today is a bittersweet one. He was supposed to be getting his cells today - yesterday was his actual birthday. Keir is committed to getting better, to getting a transplant, and to getting through this. I apologize if I sound unappreciative of the good news we got on many fronts. I am very run down at the moment, physically and emotionally. We could really use prayers for some smooth sailing. I am also trying to find a balance between being pro-active on making sure this gets set up and being a pest to the Loyola staff. That's a hard one for me. They seem extremely competent, and saw us on short notice, have already gotten the bone marrow transplant access transferred and got him in to see the radiation oncologist.
One of the hardest parts is leaving the people (staff) at Rush who WERE good and on whom we relied during all this in the past four months. I know others of you on here switched hospitals. Did you have the same apprehension? It's so hard to "start over.'
My induction was difficult and the chemo hit my heart hard and lowered my EF to something in the 20s. It recovered adequately by the time I went in for transplant after one round of consolidation. My heart now functions normally. But because of the trouble I had with induction they decided to do a "slightly reduced" conditioning. But no radiation. No t-cell depletion. I went into transplant in remission and they told me that was important. My center is North Shore University Hospital on Long Island and I got a second opinion from Memorial Sloan Kettering in NYC but never changed hospitals.
I was FLT3 positive. I did not have any inhibitors like sorafenib. I did not have any post transplant chemo like Vidaza or Decitabine. I didn't have a DLI subsequent to transplant. My sister was my fully matched sibling donor. She was 48 and I was 52 at the time of transplant. I've had moderate, very manageable GVHD. Right now I'm on 15 mg/day of Prednisone and never took more than 20mg/day. I went about 2 months on no meds but had a little GVHD flareup a couple of months ago. I went back to work six months after transplant and worked from home for quite some time before that. I will celebrate my one year "birthday" this Saturday and I feel well. I constantly worry about relapse and read way too much but so far so good.
So while no two cases are exactly alike I think you will see some similarities in our cases. And Keir's youth, strength and attitude are clear advantages. Take a deep breath, focus on the prize and don't let the speed bumps distract you. This is do-able. Take care and good luck.
Lou
Here is a quote I found that reminds me of you amazing people:
Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.
A.A. Milne
I am praying for smoother waters for you and keir. I read an amazing bible verse that helps me in Isaiah 30: 20-21
Although the Lord gives you the bread of adversity and the water of allocation, your teachers will be hidden no more; with your own eyes you will see them. Whether you turn to the right off to the left, your ears will hear a voice behind you saying, "this is the way; walk in it.
I know God is with us as we face this trial
So he has decided to go with Loyola. He feels sure. I don't have peace about any option, but his hem/onc from Rush, (not the transplant doctor) whom we do trust highly, said she trusts Loyola's team absolutely and they do the highest number of transplants out of all the hospitals in this state doing them. They have dealt with patients in Keir's situation before with good outcomes.
I would like to hear - if anyone would share - decision dilemmas and how you ended up resolving them. I know Keir can change his mind up until the last second and told him this. He seems resolved - seems to have a real conviction that even with a reduced intensity regimen transplant offers the best chance of cure.
Lori -- you are wise to let Keir make the decision and I feel his decision is right. Not because it was the one I made -- actually at the time the transplant option was not something that at my age would increase my chances any ... so that pretty much decided it.
No, here are the reasons I feel like this is the best thing:
1. It seems to be the recommendation of your hem/onc doctor who by far knows Keir's situation best -- in my mind that alone would do it ... you need to have the full support of your entire med team, and this really sounds like the way to go.
2. Keir made the decision -- it is his to make and if you made it then you would always blame yourself. Don't try to over-rule him -- he is doing what he wants to do and what he feels confident in, and that is very important to his recovery. I think this is quite important.
3. Wait and see -- that is the option I took. I took it because the chances of survival were as good with that as with anything else. And yes, there was the fallback position of a transplant. But the type of AML that Keir has is not the wait and see type. It sounds like they are almost expecting him to relapse without the transplant. If they had strong confidence (even 50-50) that chemo only would work, then ok. But I do not feel like they have that confidence, and it seems Keir does not either. I think he has chose the best route.
Remember, I am not a doctor -- this is just engineering logic here, nothing else. Whatever Keir decides, it will be right -- right for him. He and his med team will have confidence that they are giving it their best possible shot. That is very important. Please continue to keep us up on everything. Remember, we are praying for you -- dave
I'm so sorry to hear of all the hurdles you guys are going through. We also got a second opinion when we found out Vince's brothers didn't match and they wanted to do chemo only with a BMT completely off the table. I contacted a BMT specialist at the NIH and he looked over our info and agreed with our leukemia team, chemo only and save a transplant for relapse. I asked the NIH doc what his relapse chance was with chemo only and he said 50/50 (which was a really good shot). I was satisfied we were doing the right thing after hearing that. Now if one of his brothers matched we would have been in your position. I would go with your gut and with the docs that know him best. I've messaged you some more info. I'll keep Keir in my prayers.
Julie
The other thing is that they have decided NOT to do irradiation and a reduced intensity regime despite his cardiac ejection/ fraction issue and just do the full regular regimen. (with no full body irradiation) The radiation oncologist felt Keir could handle full body radiation on a regular schedule and if that was the case, he could handle the regular busulfan cytoxan chemo regime. A cardiologist will monitor him if need be.
Keir would enter the hospital Jan 1 and get cells on Jan 9. They prefer not to do more consolidation chemo because they feel that (chemo in general) is what is compromising his heart, so would like to avoid it if at all possible.
It is all rather confusing to me as their take was vastly different than the doctor at Rush but I do trust these doctors very much and they do more transplants than Rush does.
Snags may occur - bureacratic ones - but I am relieved they think he is well enough to do the transplant. I was surprised they decided to do the full regular regime given his e/f but they felt the rest of his heart, based I am assuming on the cardia MRI, was in very good shape - no wall thickening or other issues. Also his ejection fraction on the cardiac MRI was 35% as opposed to about 25% on the echo. The cutoff for Rush was 40%.
SO - if the national bone marrow registry people will work with them on the HLA typing, a piano doesn't fall on the donor, or some unforseen problem- it will go ahead.
I am exhausted! But very very relieved. Keir will have a few more weeks to recover and be on the meds, too, which already seem to be helping generally, and I can fatten him up more with healthy stuff. A minor delay, they said, will not be an issue re: more consolidation. It would have to go further than a minor one.
I know many of you have experienced similar delays and worse. I am still - being Mom - worried about a million things going wrong, from the normal to a piano or anvil falling on the donor. But I wanted to let everyone know the latest.
Lou
I have always deferred to the expertise of others when making a decision about my health, especially when I knew that my knowledge in a specific aspect of medicine was inferior to theirs. That is the tact that I have taken with my own treatment. I ask questions only when I need to understand more about a particular therapeutic move. I don't challenge my doctors frivolously. Nevertheless, I expect to be given all of the information that I need to know from my doctors, and I think that this is what Lori has been given. When it comes to the treatment of AML, although the process seems to be narrowing to a greater consensus, there are still aspects of therapy that differ from one place to another. If the decisions were so cut and dried, everyone would be doing the same things.
Lou, I suspect you have acted the same way as I. We are both thriving and I for one, will not look back or even over my shoulder. None of us should ever attempt to imitate Lot's wife. Looking back can only get us in trouble.
Happy 1st year anniversary again!
Cliff