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
If I remember correctly Tuesday was Cliff's 4th rebirth day and I just wanted to wish you well my friend and hope you and your family are doing good.
Margaret
So great and uplifting to read your update on Jimmy!!! It definitely appears that third time is the charm. How are Jimmy s T cells?
Blessings
Julie
Praise be to God and all who have brought all of you some victories over this awful disease. Others have said it better than I - but I pray you get many happy days in the future to triumph over this.
Susan
Jimmy's T cells are at 100% donor so hoping this will do the trick. We really are very thankful for each day we get, our son is visiting for the weekend from college and our 2 daughters play field hockey 1 in college and the other in high school and Jimmy has been able to make several games so he is enjoying every minute of it.
And Dave I'll try and watch out for that bus.
Hope you all enjoy the weekend.
Margaret
I try to remember everyday to enjoy the extra moments I have with my three daughters.
Blessings,
Julie
Xo
I know relapse is the scariest word you can hear but it doesn't have to mean the end . I know we still have a long way to go but as long as things keeps heading in the right direction will cherish every day.
Margaret
Your update is so timely as others have joined us who are struggling with split chimerism and fear of relapse after SCT.
Jimmy's journey is so inspiring and should give so many hope. You two are in my prayers. My prayer is that Jimmy is cured once and for all.
Blessings
Julie
I was thinking about you yesterday and worrying why I had not heard from you. I am thrilled that Jimmy is doing so well.
I have had a magnesium problem since my transplant. I always run at the very very lower limits of normal to slightly below normal. I take a combo pill twice a day that my wife bought at Costco for me. I never had to get infusions. You should speak to your pharmacist about a formulation of magnesium that Jimmy could take orally that does not give diarrhea (which, as you know is a common side-effect). And even if taking magnesium orally caused some looser stools, that can be managed as well with fiber +/- OTC imodium. It is so annoying to have to get anything IV and anything that Jimmy can do orally would be so much better. Leafy green vegetables, nuts, seeds, fish, avocados....these are all high in Mg.
Keep me posted and give my best regards to Jimmy.
Cliff
We have tried all different combinations for the magnesium. When they try to take him off the IV infusion and give it to him orally it upset his stomach too much.At one point he was up to 14 mag pills a day, now he takes 7 a day plus the twice a week infusions. Yes it is a pain in the neck but he's able to do that at a hospital closer to home and if that's the worst thing going on right now, we'll take it.
Cliff I hope your back is feeling better after your surgery and I just wanted to wish you and your family a happy Hanukkah.
Margaret
I am going to steal you away from Jimmy. You are so incredibly wonderful. I am sorry that he need the infusion. It was funny, but I was taking the Mg 3 times a day orally and having diarrhea from it. When you have diarrhea, you lose Mg, so it is a vicious cycle. So, I asked my transplant doctor if I could just stop it and see how I did. I ended up in the low low normal range and now I take a pill that is a mixture of calcium and magnesium. Eventually Jimmy will get off of the infusions, but they must be such a drag.
My back is slowly getting better. Many of the symptoms I had prompting the surgery are gone, but my back is sore. Yesterday was my 34 anniversary and I was reaching for a pair of shoes. My back didn't like that at all, but the wine at dinner dulled the discomfort, LOL.
I wish you and Jimmy a very Merry Christmas and thank you for the Chanukah wishes. BTW....I know every Christmas song, even the very religious ones. I love this time of year.
Be as wonderful as always
Cliff
WBC. 7.0
ANC. 3.0
HBG. 12.3
PLTS. 164
Jimmy's veins are pretty shot from all of the years of treatments and the nurses have a very hard time finding veins so the doctor wanted to have a port put in since Jimmy has been getting biweekly magnesium infusion's and blood test. We had the appointments all set up about 2 1/2 weeks ago and the night before Jimmy was supposed to go in for the procedure he called the doctor and told him he decided not to have it done. He would rather put up with getting stuck multiple times , wouldn't you know it for whatever reason since then his magnesium levels have been high enough he hasn't needed an infusion... Now he thinks he's so smart haha.
Margaret
Hugs and prayers
Karen