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'm sorry it has taken so long for me to update on my husband Jimmy. Since it's been so long I will give a little background. In the 1980s Jimmy was diagnosed with Hodgkin's disease and received a BMT in 1988. 25 years later in July 2012 he was dx with MDS/AML and again went on to receive a MUD T cell depleted BMT in July 2013 at Sloan-Kettering. Jimmy had some bumps in the beginning mainly C-diff but then things went pretty smoothly in his recovery. Our biggest concern was that Jimmy had split chimerism, his neutrophils and B cells were 100% Donor but his T cells were only 2%. Despite that Jimmy felt really good back to work full-time and exercising like crazy, he was even able to start skiing again which is his passion. In January 2015 19 months post BMT at a regular check up we saw that Jimmy's count starting to drop they did a BMB and we found out he was relapsing. First thing Jimmy did was go skiing the next morning in Vermont. After a lot of back-and-forth between the doctors we have decided to do another round of induction chemo (flag) followed by a DLI. Our incredible Donor has come through again and again we are awed by the kindness of strangers. Jimmy checked back into the hospital last week and started the treatment. Just to give an idea of how good of shape he was in 14 laps around the floor is 1 mile jimmy's disappointed he didn't reach his goal the highest he's gotten so far is only 93 laps around. So far everything is going as expected and praying this will wipe out the leukemia once and for all.
Margaret
Margaret
Glad that Jimmy fared so well with the treatments so far and has a good result from the biopsy. And that he has the opportunity to have another transplant if he so choses. As far as whether I would do it again:
I have been thinking about this a lot lately, could I do it again if I had to? My answer is, if it is the best and/or only way to save my life then I can't see where I really have any choice. I have two boys and a wife to take care of. Do I want to do it again or would I if I didn't have anyone? Probably not.
He has lots of life to live yet, and needs to get back on them slopes. Praying for you both, thank you for the update.
DaveJ
Happy 25th anniversary. You are a wonderful couple!!
I understand totally the dilemma of your question and it will be Jimmy who makes that final decision. You are in my thoughts and prayer.
If Jimmy decides it is a "yay," I know he will have a wonderful wife, by his side, as always, to support him,
My sincere love for you both.......Sandra
Tell him that you expect him here for your golden anniversary and that the silver just isn't going to cut it. And don't feel like you are on the outside, being together for 25 years I'm sure you know his every move as well as he does.
With Gods help, prayers, and you at his side, I'm liking his chances.
DaveJ
I think I am a bit confused. His BMT in 1988 - was it autologous or from a donor?
And then he had another T cell deplated MUD BMT 2 years ago? So not sure if he got one or two transplants already...
I had my BMT from MUD (regular, not T cell deplated) 10 months ago. It was a horrible process, but I too thought what if I ever had to do this again. Would I? And my answer is, without hesitation - yes.
Although it's extremely difficult, my feeling is that if I did it once and lived to see the other side, I could do this again, if it meant a bigger chance to see my kids graduate, get married, to celebrate more years with my husband, to get to be here.
Of course, I'd depend on the opinions of doctors I trust, and I'd seek several opinions (as I have done throughout my process) so I feel as good as I can with my decision. Knowing there are always more unknowns than knowns and more things we don't really control...
Good luck!!
Abby
Right now the stem cell transplant is the only consistent curative therapy for those with high risk AML like Jimmy's (from MDS) or mine (FLT3 positive). Without a stem cell transplant it's likely a matter of time. I'm approaching 55 and while you don't say how old Jimmy is it appears that he is in that same general age group, give or take. We still have a lot of living to do, a lot of good years ahead of us. The way you describe Jimmy, he is a vibrant and active man, strong and full of life.
What others would do shouldn't matter to you. No two individuals are the same, our circumstances are different, our ages, our overall health. Jimmy is doing 5 miles around the floor, he's stronger than he thinks. As you know, they bring you to the edge with the chemo in an attempt to clear out as much leukemia cells as possible before transplant. Everybody has trouble with induction, conditioning or consolidation. Nobody breezes throgh everything and you're not supposed to.
There have been many people who have done well with a second transplant. I was recently at a survivor's dinner and one of the speakers had two transplants. My doctor has told me that would be her recommendation should I relapse. And being well over a year since first transplant is a positive for Jimmy.
If Jimmy couldn't take a second transplant his doctor wouldn't be recommending it. If it wasn't his best option they would be suggesting a different plan. You're at a world class hospital with some of the best medical minds in the world. Trust their experience, trust their knowledge. This is why you went to MSKCC, to get the benefit of their wealth of knowledge and experience. Don't second guess them now at a time when their expertise is most needed.
I'm not telling you what I would do because as I said, that's irrelevant. But based on how you've described Jimmy and his journey so far, I think you can tell what I think he should do. Good luck and let us know as things develop.
Lou
Have they mentioned Revlimid? The doctors are putting my son on this as a preventative measure
He also had a SCT due to MDS/AML.
Hugs and prayers.
Karen
I know I'm a little late but Dave,Dave J, Lou and all the other Dads I hope you had a great Father's Day.
Margaret
Thank you so much for the update. You two have been in my thoughts and prayers. Please do not ever feel bad about sharing the ups and downs of Jimmy s and your journey. That is the whole point of this support group, imho. if all we ever shared is rainbows and unicorns no one would benefit from all the amazing group. I have never met a better group. We seem to have our roles and each of us or at least I do,there but for the grace of God go I, when one of us hit a speed bump.
Experiencing these bumps, although viciously, is helpful to many of us. For me it builds my faith in the amazing warriors, med teams and almighty God.
Jimmy is amazingly healthy, brave and had tons of life to live. I applaud his decision. Although I have not experienced sct, I know without I doubt that I would opt for a sct. The main reason for this is all of the great success I have seen with this amazing collection of warriors.
Margaret, please consider to share. The details of Jimmy s successful second scy will inspire and treasure others. I'm sure that by not depleting the t cells, Jimmy s chimerism will not be split this time. Continuing to pray for every success for you two.
Blessings
Julie
For any of our old timers here, if you remember Jimmy and Ed went trough their transplant together and now as we are walking the halls I keep passing Ed's old room and missing him terribly.
Margaret
I joined this amazing group in June of 2013 after dx in March and I do remember 2013 team transplant. I think of Eddie often, he was such an inspiration. How bitter it must be to relive that time.
But hoe amazing for Jimmy to be in such a nice room to receive his final cure in such nice surroundings. Praying for smooth sailing
Blessings
Julie
I've been following jimmys journey and praying for this final treatment to be his last. As his wife and caretaker You've been his rock and been through so much, I pray for strength and hope and peace for you as well
Xo
Lea