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.
Very bad news... We received word yesterday that Sal has relapsed already, just 8 weeks after his last dose of chemo during his 4th round of consolidation.
He had gotten the "all clear" to return to work and was scheduled to start on Monday (Dec 30). We were told that there was a 40% chance that Sal was already cured. He was very excited to go back and "use his brain" (he's a software architect). The plan was to have monthly blood draws and quarterly bone marrow biopsies. Last week (Dec 19) Sal had a bone marrow biopsy, which was to be his "baseline." However, there were 27% blasts in his bone marrow. We do not yet have the cytogenic results.
Sal was diagnosed on May 6, 2013 and his original BMB had a sole abnormality of Trisomy 8, negative FLT3, negative NPM. This BMB was done in San Diego, where Sal was working at the time and where he received his induction chemo. When Sal's care was transferred to Stanford Hospital, near where we live, the slides were again reviewed. First consolidation began in July, 2nd August, 3rd September, 4th end of October to beginning of November.
Current blood work:
WBC 2.4
RBC 3.06
Hemoglobin 10.2
Hematocrit 30.3
Platelets 125
Myelocytes 1%
Our hemotologist/onc was as surprised about the results as we were. He is going to confer with the BMT doctor about next steps and begin transferring Sal's care to him. It looks like Sal may be admitted to the hospital on or about January 2 for another induction. The good news is that one of Sal's sisters is a 10/10 match.
In addition to all the medical worries, we are faced with financial stuff as well. I lost my job (due to layoffs) a month after Sal's diagnosis, the day Sal arrived home from the airport from San Diego. But you all have had to deal with this, too...
We are absolutely floored. Has anyone else relapsed so quickly after consolidation? Or heard of this?? It seems that the consolidation rounds merely kept the leukemia in check. Sal was FLT3 negative, but maybe that was an error? (Eddie, didn't they miss the FLT3 diagnosis in your case?)
Monique
He had gotten the "all clear" to return to work and was scheduled to start on Monday (Dec 30). We were told that there was a 40% chance that Sal was already cured. He was very excited to go back and "use his brain" (he's a software architect). The plan was to have monthly blood draws and quarterly bone marrow biopsies. Last week (Dec 19) Sal had a bone marrow biopsy, which was to be his "baseline." However, there were 27% blasts in his bone marrow. We do not yet have the cytogenic results.
Sal was diagnosed on May 6, 2013 and his original BMB had a sole abnormality of Trisomy 8, negative FLT3, negative NPM. This BMB was done in San Diego, where Sal was working at the time and where he received his induction chemo. When Sal's care was transferred to Stanford Hospital, near where we live, the slides were again reviewed. First consolidation began in July, 2nd August, 3rd September, 4th end of October to beginning of November.
Current blood work:
WBC 2.4
RBC 3.06
Hemoglobin 10.2
Hematocrit 30.3
Platelets 125
Myelocytes 1%
Our hemotologist/onc was as surprised about the results as we were. He is going to confer with the BMT doctor about next steps and begin transferring Sal's care to him. It looks like Sal may be admitted to the hospital on or about January 2 for another induction. The good news is that one of Sal's sisters is a 10/10 match.
In addition to all the medical worries, we are faced with financial stuff as well. I lost my job (due to layoffs) a month after Sal's diagnosis, the day Sal arrived home from the airport from San Diego. But you all have had to deal with this, too...
We are absolutely floored. Has anyone else relapsed so quickly after consolidation? Or heard of this?? It seems that the consolidation rounds merely kept the leukemia in check. Sal was FLT3 negative, but maybe that was an error? (Eddie, didn't they miss the FLT3 diagnosis in your case?)
Monique
There has been a LOT of progress in the battle with AML even over the four years I have been on the forum (I joined after my last chemo round when I thought maybe others could benefit from my experience). But that said, there is more that the doctors and researchers do not know than what they know. This is true of most diseases ... they may stumble on something that works using what they call the clinical method (which is trial and error -- Cliff, please correct me if I am wrong here ... I am not trying to put down the medical establishment you know that -- they saved my life).
But what I am saying is that there is still a lot of chance involved and while most oncs and hematologists do the very best that they can, they do not have all the answers. I am thankful that they are willing to move ahead with us despite that. If they had to have all of the answers before treating us, well, we just would not get treated.
I have pressed my oncologist on some issues involving stem cells, how a mutant stem cell can produce blasts that do not mature, what puts a person into remission (is it the death of this mutant stem cell, or does it for some reason just stop reproducing?). I pushed her to the limit and finally got the "we just don't know" at some point where I figured best to stop badgering her.
Obviously I have a good and caring onc, and have had great med folks right from the beginning (UAB Hospital in Birmingham, AL). However, my feeling is that some of the are quite reluctant to say: "I don't know" and so there is sort of an impatience with them to get away before they get that question that they cannot answer. Others are super-sensitive to lawsuits and do not want to put anything on the record that might be used against them. I feel this is why we often get unjustified negative messages from them. They would rather have a positive surprise than a negative one.
Discussion groups like this are extremely beneficial, and as you learn more and more, please bring it to this group, and we will do likewise. In my experience with a variety of maladies, I have learned far more from those who have the same problem as I do than I have from those who are attempting to treat us. Practical stuff that is useful as opposed to abstract numbers that really never apply to a given individual because every case and every person is different. I hope this helps -- dave
I did a clinical trial for my original induction. Things looked good. Followed with 4 rounds of HiDac. The final one my doc reduced the dose due to prolonged platelet recovery, I never really saw the plus side of 100 for platelets after my 3rd consolidation until after transplant. I had round for in July 2012, with my plts at 71. They hit 98 in late Sept at an outside lab. Were 93 in early Oct when they did my post treatment BMB which showed no residual diseas. They were 61 in early Nov when I got the bmb results (stuff had been sent out to see if I qualified for the one remission vaccine trial) they were 24 on Dec when I had 11% blasts in my blood.
I had HAM as salvage. Hi dose Ara c and mitoxantrone went back into remission. Had a consolidation round while waiting for transplant. I switched centers because I didn't trust the transplant team at the hospital I was at for chemo. Downright hated the coordinator. Loved my oncologist, but the transplant team was pretty much in the dark ages. (My oncologist tried to stay diplomatic about it, but the other floor docs, nurses, and an ID all said they would transfer if it was them or a family member) Original center didnt like Haplo transplants. New center does lots of them.
Sounds like you are in better hands at the closer hospital this time. Other than ignore stats the other thing I've learned in this process is no one (minus your caregivers and such) has more to lose than you and if you feel something isn't right speak up. If you don't like the manner information is being relayed to you find someone else. If something seems off about the info ask someone else to double check that you understand what was said.
Medical staff are human all have different ways of doing things and different personalities you need to find the ones you can trust to give you accurate info in a way you can understand it. Sounds like you have with the new team.
Physically going through transplant if something seems off or you just don't feel right. my regular tech for clinic hated it when I said it, but she knew she had to find the NP or doc if I answered that way in the mornings because she knew something wasn't right.
I hope that garbled mess makes some sense. It is late I've already taken my meds.
Mondreamr1, thank you so much for sharing. Your experience is fascinating and a great lesson in the patient being one's own best advocate.
Planxty, thanks for the prayers and candles! Cliff and Dave, your enduring support and wisdom are greatly appreciated.
I will start a new (and upbeat) thread updating Sal's situation. Love, hope and prayers to you all on this board,
Monique
love the fighting spirit and communal love on this board. there is nothing like it anywhere in the world.
Ed
See the "Prayers for Ed" thread for Ed's update.
Best,
Monique