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.
Hello,
I've lurked for the past two years. I could never get anything to login from my ipad at the hospital. Somehow locked attempting to make an account through Facebook. Finally just deleted the FB connection and it let me make an account.
I was dx with AML M2 - normal cytogenetics (there were 3 cells with unkinown marker chromosomes that no one seemed to worry about) on Nov 1st of 2011 after dealing with some strange bruising, being winded, and having female issues for at least the month if not two before - it is hard to pin point when things really started. I'd defended my thesis in mid Sept - and put a lot of things up to stress.
I was on the Hopkins FLAM clinical trial for induction, and went into remission. My sister was not a full match, only a half. The center I was at originally did not like haplo transplants. I did not have a good registry match in their opinion to risk transplant over chemo being intermediate risk. I did 4 rounds of HiDac - had very long recoveries between them. I started consolidation in Jan and finally started my last round towards the end of July 2012. My platelets were not moving so I went into the final round below where they wanted my counts. I finally hit 98 on the platelets at the end of Sept/beginning of Oct. Had my post chemo BMB. This one came back clean, no residual disease, no WT-1 marker (I was scheduled to start the one vaccine trial, my original BMB sample was screwed up so they sent a post treatment one to try again) Went back at the beginning of Nov for the results - my platelets were down to 63. Onco thought maybe ITP or something - as I'd just had a clean BMB. Was just going to watch it.
Platelet counts continued to slowly slide, I had blood work done at some other doctors' offices trying to get all those wonderful appointments done post chemo. by the end of Nov platelets were down to 50. Dec 6th I had a follow up with my oncologist. My platelets were 24, with 11 % blood blasts. I started salvage chemo on the 10th with HAM. Achieved remission. Decided I'd had enough of the transplant team where I was and their dark attitude about everything. Had a consult for a haplo at Hopkins in Jan. Got told my best option was probably a mini haplo. Went through a round of consolidation. Waited for recovery. Had my mini haplo from my sister on April 12th - outpatient at Hopkins. Despite sepsis starting day 10 - them not knowing if it would do anything to the engraphtment- my T-cell chimera came back no evidence of patient DNA on day 28, Day 56 marrow - same thing. All follow ups have been my sister. Convinced my BMT doc to let me go diving on day 120. - he is the one who said we were doing this so I could get my life back. Probably wasn't the best idea and I was exhausted for two weeks after.
Got to deal with some mild GVH over the summer and CMV that doesn't like to stay where it belongs. Thought I might be cleared to go back to work sometime after my 6 month BMB in Oct, however, I had some sort of viral syndrome at the beginning of September that lead to ITP. We did have several days where we thought I'd relapsed again as my platelets dropped to 7. Blood smear was clear (which was interesting that day) and my BMB came back clean later in the week. There was some evidence that it looked like LGL leukemia - the PCR test came back with some unknown significance of peaks.
Now dealing with the ITP. Steroids and tracro stabilized but didn't touch it. IVIG gave me a temp boost and cut down on the destruction. I am now on Rituximab.
I hope I covered everything, probably too long winded as usual.
I've lurked for the past two years. I could never get anything to login from my ipad at the hospital. Somehow locked attempting to make an account through Facebook. Finally just deleted the FB connection and it let me make an account.
I was dx with AML M2 - normal cytogenetics (there were 3 cells with unkinown marker chromosomes that no one seemed to worry about) on Nov 1st of 2011 after dealing with some strange bruising, being winded, and having female issues for at least the month if not two before - it is hard to pin point when things really started. I'd defended my thesis in mid Sept - and put a lot of things up to stress.
I was on the Hopkins FLAM clinical trial for induction, and went into remission. My sister was not a full match, only a half. The center I was at originally did not like haplo transplants. I did not have a good registry match in their opinion to risk transplant over chemo being intermediate risk. I did 4 rounds of HiDac - had very long recoveries between them. I started consolidation in Jan and finally started my last round towards the end of July 2012. My platelets were not moving so I went into the final round below where they wanted my counts. I finally hit 98 on the platelets at the end of Sept/beginning of Oct. Had my post chemo BMB. This one came back clean, no residual disease, no WT-1 marker (I was scheduled to start the one vaccine trial, my original BMB sample was screwed up so they sent a post treatment one to try again) Went back at the beginning of Nov for the results - my platelets were down to 63. Onco thought maybe ITP or something - as I'd just had a clean BMB. Was just going to watch it.
Platelet counts continued to slowly slide, I had blood work done at some other doctors' offices trying to get all those wonderful appointments done post chemo. by the end of Nov platelets were down to 50. Dec 6th I had a follow up with my oncologist. My platelets were 24, with 11 % blood blasts. I started salvage chemo on the 10th with HAM. Achieved remission. Decided I'd had enough of the transplant team where I was and their dark attitude about everything. Had a consult for a haplo at Hopkins in Jan. Got told my best option was probably a mini haplo. Went through a round of consolidation. Waited for recovery. Had my mini haplo from my sister on April 12th - outpatient at Hopkins. Despite sepsis starting day 10 - them not knowing if it would do anything to the engraphtment- my T-cell chimera came back no evidence of patient DNA on day 28, Day 56 marrow - same thing. All follow ups have been my sister. Convinced my BMT doc to let me go diving on day 120. - he is the one who said we were doing this so I could get my life back. Probably wasn't the best idea and I was exhausted for two weeks after.
Got to deal with some mild GVH over the summer and CMV that doesn't like to stay where it belongs. Thought I might be cleared to go back to work sometime after my 6 month BMB in Oct, however, I had some sort of viral syndrome at the beginning of September that lead to ITP. We did have several days where we thought I'd relapsed again as my platelets dropped to 7. Blood smear was clear (which was interesting that day) and my BMB came back clean later in the week. There was some evidence that it looked like LGL leukemia - the PCR test came back with some unknown significance of peaks.
Now dealing with the ITP. Steroids and tracro stabilized but didn't touch it. IVIG gave me a temp boost and cut down on the destruction. I am now on Rituximab.
I hope I covered everything, probably too long winded as usual.
What a journey! Your story it's very interesting to me because my consolidation experience is very similar. I had inverse 16 and started constipation the first of May this year. I am getting to start number four. My platelets took forever to recover. In fact my platelets never made it to 100. I took 60ish days between each session. Right now I am chemo only but am concerned that my slow count recovery may be a bad sign.Did your docs feel that slow count recovery was a sign that abmt was in your future.
Julie
What a story! So sorry you had so much trouble tapping in here, but I have heard a few people say the same. Your story fascinates me. I had a full haplo (my sister) but it was a protocol from Italy. I was the first here in the states to have it. Did you leave Hopkins or was there another hospital involved? I spoke to multiple transplant groups, including one physician who only does haplo's in Philly -he did not do my transplant.
Well, in any event, you sound like you are doing well with a few hiccups along the way. Diving, no kidding. I want to swim. I love the water, but my counts are just recovering and my stamina stinks. I am also 49. My doc just told me this last year appears to have aged me 20 years -that's how I feel actually, but I am hoping my road to recovery now is slightly speedier. My platelets get weird sometimes, but they tend to rebound.
Sorry to hear about the ITP. I am very curious what your docs say in terms of it being a risk factor .
Please continue sharing. We all learn so much from each other.
Peace,
Andrea
I was diagnosed the same month and year Nov 2011. I first went through chemo then consolidation only, then relapsed Oct 2012. Then rinse/repeat, induction again during Thanksgiving 2012. BMT Jan 22 2013. I did have the same cytogenic mutation show up again on day 80 post tranplant, so I am now in treatment again for relapse. I have been receiving Vidaza every month and my last 2 BMB have been disease free. It has been a long road, but I am thankful for life. I will have my first Thanksgiving at home after 2yrs. So sorry you are having issues with ITP. Wow, you have really been through it! Congratulations on going Diving, was it water or air? It sounds awesome! Thank you for sharing your story.
Take Care,
Suzanne
three posts in a row with people surviving since 2011. Good thing indeed.
We are here for you with any questions you might have. We all have different paths, but already people are chiming in who have had similar situations.
Julie I hope your next constipation goes well! ;-)
Ed
Sorry to hear about your saga, but it is clear to see that your love of life and adventure has served you well through all of this. I have to admit that I am very unfamiliar with the FLAM and HAM regimens. I was diagnosed at the end of March 2011, had normal chromosomes, went through two inductions, consolidation, conditioning, and finally transplant (allograft) on Sept. 8, 2011. I have been in remission since.
Your course has surely been complicated, and I know you didn't need the ITP on top of all of this. From what I understand, the RItuximab should help the situation greatly. I am curious about the evidence for an LGL leukemia, and don't quite understand how that could be the case, since it involves a completely different cell line than AML. In any event, it sounds like the PCR was OK.
I am glad to see that you will be adding your experiences to ours. As others have said, this group has become a very wonderful family, and incredible one, actually, and I hope that our collective knowledge and experience can be helpful to you. Your strength will be helpful to us.
No discussion is every too long winded on this website.
Cliff
I was also diagnosed in 2011. End of August.
My two siblings also weren't a match, with one being a 50% match.
(and no available good match in the registry)
I was "favorable risk" with normal cytogenetics, NPM1 mutated FLT3 negative, so combining this with no good match - I had induction and 3 rounds of what is now known as "constipation" :-)
It's been 2 years since my remission and in January it'll be 2 years since I finished all treatment.
Wishing you lots of health.
Oh, and not at all long winded! I always want to read every detail!
Abby
@Andrea - Sorry mine was a mini haplo at Hopkins. My chemo rounds were done at a different hospital, though my original induction was a Hopkins lead clinical trial. The on site PI oncologist for the trial actually left for Hopkins about the time I finished up consolidation. My doc mainly does mini haplos (Hopkins has them on what seems to be a cookie cutter transplant line there are so many of us (in comparison to what you'd find a other centers) My transplant actually fell under one of their clinical trials - even though they do the haplos all the time - they are comparing them to double cords using in think MN's protocol. I did have the option of looking for a cord match (from the original search there hadn't been any ones the original center liked - but I have major issues with original center's transplant team so I don't know if things were even really looked at) my doc didn't randomize that part - is was more oh you are doing this this we'll put your data in it. I was/am on a tracrolimus study - that was cutting it off at day 60 (had been day 120 - but they got the data back from the day 90s and moved everyone to day 60) I've read some of the papers out of Italy (while I was trying to figure out if I wanted to go the mismatched by unknown number at the time unrelated donor or the haplo with my sister - that time I didn't even know that mini was given to anyone under 70 found that out after my consult at Hopkins)
https://web.emmes.com/study/bmt2/protocol/1101_protocol/1101_dUCB_Haplo_v1.pdf
@Zann I'm sorry that is a rough road -- look we are still here two years later. Congratulations on getting to be home for Thanksgiving. Hospital holidays, while they try to make them better aren't the same. I was released from original induction on my 30th birthday. Best birthday present ever was going home and sleeping in my own bed after a month plus in the hospital.
@Ed - thank you! Seems to have been a "good" time to have been dx as we are still here to talk about it.
@Cliff - congratulations on being 2 years out from your transplant!!! That is great news.
LGL isn't well understood and there isn't a standard treatment for it. But I had a suddenly higher Lymph count, the blood smear when they thought I'd relapsed with the AML - my doc at the time was focused on looking for blasts - but did note I had an unusually high number of granulocytes on the smear. Then there was one in my bone marrow slide. It can happen post transplant. There are a few cases where the post conditioning chemo has possibly damaged the donor cells and the LGL arises from the donor cells. More times it seems to be brought on by CMV reactivation or EBV. Some of the papers seem to think it actually plays a GVT role. It is also with the immune system being so confused post transplant - not very well understood as to the developmental stage that it is in - the bone marrow had thought it was an adult system, but now it has to propagate are you closer to an infant or a neonate in developmental terms - why they wait to revax until the immune system can handle mounting a protective response. In LGL you get a single T-cell that ends up with a strange gene rearrangement and just keeps dividing. It isn't really a bone marrow based leukemia to start - my doc said it is closer to an autoimmune disease and the disease progression of something like RA. There isn't too much in the literature about it Penn State Hershey seems to have the most info they are building some time of registry. Doc wasn't too concerned about it even if it was as it is more of a chronic condition than a need to worry about leukemia http://www.nature.com/bmt/journal/v28/n12/full/1703308a.html http://www.pennstatehershey.org/web/cancer/patientcare/services/leukemia/lgl http://www.uptodate.com/contents/treatment-of-large-granular-lymphocyte-leukemia
FLAM http://clinicaltrials.gov/show/NCT01413880 (they have removed the other centers from it, and the Dr in charge of it retired from Hopkins)
HAM is just high-dose cytarabine and mitoxantrone
HAM
@Abby thank you and congratulations on getting close to the 2 years DF!!! That is a date I'm looking forward to. I was inter with normal but NPM1 negative FLT3 negative (was after relapse too)