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.
I have been a stalker on this site since my husband was diagnosed In Sept. 2012 with MDS/AML and first want to thank you for all the help you all give to so many people just looking for some answers and a little hope.
I will give you a quick background. In 1980 Jimmy was dx. With Hodgkin disease and received chemotherapy, he relapsed in 1984 and again was treated with chemo and radiation. In 1987 he relapsed again and had an autologous transplant in March 1988. Since then he has been incredibly healthy and we went on to get married and were blessed with 3 beautiful children. At a routine check-up this past July Jimmys counts were low so the Dr. wanted to do a BMB to rule out any problems. His BMB showed his blast were at 17%. It was repeated in Sept. and they were at 20%. MDS/AML. He started treatment in Oct. with low dose decitibine and were able to get the blast down to 10% but now they have not moved in 2 months and the Dr. feels the decitibine has stopped working. Because of all the past treatment Jimmy has received the Dr.s are trying to decide if they should try a more intense chemo or head straight to transplant. What I wanted to know is has anyone on this forum gone to transplant with 10% blast count? Thank you for any insight you can give us.
Margaret
I will give you a quick background. In 1980 Jimmy was dx. With Hodgkin disease and received chemotherapy, he relapsed in 1984 and again was treated with chemo and radiation. In 1987 he relapsed again and had an autologous transplant in March 1988. Since then he has been incredibly healthy and we went on to get married and were blessed with 3 beautiful children. At a routine check-up this past July Jimmys counts were low so the Dr. wanted to do a BMB to rule out any problems. His BMB showed his blast were at 17%. It was repeated in Sept. and they were at 20%. MDS/AML. He started treatment in Oct. with low dose decitibine and were able to get the blast down to 10% but now they have not moved in 2 months and the Dr. feels the decitibine has stopped working. Because of all the past treatment Jimmy has received the Dr.s are trying to decide if they should try a more intense chemo or head straight to transplant. What I wanted to know is has anyone on this forum gone to transplant with 10% blast count? Thank you for any insight you can give us.
Margaret
First of all, you sound like such a loving person and like many spouses on this site, you are giving your loved one the support he needs. Since I have become more emotional post-transplant (I wonder what the personality of my donor is), I will confess that I welled up a bit reading your note.
When I failed my first induction, I asked my doctor what would happen if I failed my second one with a low level of blasts (I was at 5% right after chemo, but it rose to 9% the next week (I started at 68%). He told me that I would go straight to the conditioning regimen and then transplant. Fortunately, the second induction worked and it wasn't a crash transplant.
I don't know if the same applies to Jimmy, but it might. Where is he getting treated? There are slight philosophical differences between places. I am going to the hospital next week for some inoculations and will ask my doctor.
Hang in there.
Cliff
Thank you for your response. Jimmy is also being treated at Sloan Kettering and we are very happy with his Dr.s and the care he is receiving. Tomorrow the team of Dr.s are having a conference to decide the best course of action. My biggest concern is that we were told there is only so much chemotherapy a person can receive over their lifetime but it is not a definitive number. So it will either be more chemotherapy and pray his body can handle it or straight to transplant with the higher blast count and unfortunately a higher chance of relapse.
What did you mean by crash transplant?
Margaret
I have AML with FLT3. Though I achieved remission marrow after my first induction, I relapsed fast. My blasts were not getting below 10%. At one point, after re-induction I achieved 8%, but within a week jumped back up. I was in a clinical trial to reduce blasts, however because my situation was dire and transplant necessary, they were willing to go to transplant at 10% blasts of that was the best we could get. Fortunately, the clinical trial drug I was on, allowed me to go in to transplant essentially disease free. The goal is to get the blast count as low as possible heading to transplant. I had radiation and chemo as a pre-transplant regimen. I also had chemo after my transplant.
Keep thinking positively. It can be overwhelming at times, but Jimmy is in good hands.the doctors at Sloan Kettering are great based on what I have read here. You can only control what you can control - positive thinking and the fight.
In terms of crash transplant, I believe that is essentially what happened to me, you reach a point that you have to go to transplant, do not pass 'go', do not collect $200. I had a haplo(half match), since a whole never materialized. I was on every emergency list around since my leukemia had gotten so aggressive and had become resistive to chemo. We essentially had a goal to get my blasts as low as possible and then literally it was a GO. I was admitted the day after Christmas.
BTW, I am 100 % donor marrow now and at Day 62. Rough road, but HOPE always, so hang in there. My best to Jimmy. I think the world of our caregivers, you are wonderful!
Peace, love and hope always.
Andrea
That was an unfortunate term I used. By crash, I mean that they go right on to transplant preparation without trying another induction. Let me know who Jimmy's doctors are. I am just curious. Dr. Papadopoulos is my transplant doctor and I think the world of her.
It is true that there is a limit on the amount of drugs like Doxorubicin that people should receive, because of toxicity to the heart. I got that on my first induction along with Ara-C. It didn't quite work. I got high dose Ara-C the second time (there really isn't any cardiotoxicity with this one) and I did well. I would only be guessing what Jimmy will get, but I can tell you this...his doctors will have discussed every regimen before making a decision and you can be sure that he will get great care, if transplant is the direction he will be going. Trust these guys...they have seen it all.
Will be thinking of both of you. Take a deep breath and give your kids an extra hug. I really couldn't see my middle daughter and son much during my treatment, because she was 2 hours away in med school and he is in Montreal, I am sure Jimmy won't see them much for a while, but make sure that they speak regularly, because that connection really makes a difference. I hope you don't have much trouble with the storm tonight. Just what we all need!
Cliff
Show off! I just love you and your new marrow!
Margaret,
Andrea took a good deep breath and had the most incredible attitude through all of this and is doing so well. She too has a loving spouse and family, just as Jimmy does. That is so important and that will get him through all of this. If you ever get down just think about what Andrea has told you. She is a superstar and Jimmy will be one as well.
Cliff
Jimmys Dr. is Virginia Klimek and transplant Dr. is Hugo Castro-Malaspina and as I said we are very happy with them and the incredible staff. I agree Andrea is a superstar as are the rest of you.
Luckily no snow yet.
Andrea,
Thank you for your response. From reading past post I believe the drug you were on AC220 is just for FLT3 but I will mention it just in case. We are still waiting to hear which road we are going down and I feel this is the hardest part, waiting. Congratulations on 100% donor marrow. We have been praying for everyone on Team transplant
Margaret
Ed
Well....here are some comments about Jimmy's doctors (all good! and all just my opinion). Dr. Klimek is not only an incredibly smart doctor, but her compassion and caring are amazing. Even though the just covered me once or twice during my hospitalization, every time she has seen me, she has given me a huge hug, What an amazing human being!!!!! I love her.
I only met Dr. Castro-Malaspina once, and he was quite nice. What I can say is that a guy who had AML 14 years ago and has been treated by Dr. Castro-Malaspina was assigned to me as a mentor before I went through all of this. He thinks his doctor is tops and just look at the result. He was transplanted almost a decade and a half ago and has never looked back. He just moved to Hawaii!!!!
So Jimmy is in great hands. I cannot say enough about Dr. Klimek -- an all around gem.
Cliff
Margaret
I don't understand. If Jimmy is already CMV positive, he cannot catch CMV from his donor's marrow. Are you sure the situation is not the other way around -- that Jimmy is negative and the donor is positive. I am negative and my donor is positive and I got the marrow anyway with the risk that I would seroconvert. I just don't see what the risk is for Jimmy. Please let me know what I am missing in my logic.
Good luck anyway, and give my best to Jimmy.
Cliff
I'm sure thats what they said. She did not really explain the risk just that they will be expanding the search for a new donor. Maybe I'll call the transplant Dr. and ask him to explain it more.
Thank you,
Margaret
Please do! I am baffled. Since Jimmy has evidence of a previous CMV infection, what can a marrow from a CMV negative person give him?
I am sure I am just missing something obvious.
Hang in there.
Cliff
Sorry it took me awhile to get back on here. My son was home for spring break from college and just wanted to spend some normal family time together, it was great.
After speaking with the Dr. She explained that because Jimmy will most likely be heading to transplant with a high blast count they want as many matches with his donor as possible and didnt want the donors marrow fighting any more they it has too. But it doesnt matter we were just told they have a new 10/10 match that is CMV positive. Jimmy will have another BMB next Wed. and we are meeting with the transplant Dr. on Thurs. and will get the date set for transplant.
Ed and Andrea,
We did discuss the trial at Sloan for AC220 but since it is used with the 7+3 induction, it is not an option for Jimmy because of all his prior chemo.
Thank you all again. The information you all provide is invaluable.
Margaret
As soon as I recover from my flu, I plan to come to MSKCC to see Eddie. Please keep me posted as to whether you and Jimmy are there as well. Would love to give both of you a hug (when I am not contagious). I am thrilled about the new donor. All cards will fall into place.
Love,
Cliff
I am here on the 12th floor. I would love to talk with you and give you a break if need be. I am in room 25A, and can come to the 15th floor if you need a (somewhat) happy masked up face to talk to.
Ed