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.

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Leukemias
/ Acute Myelogenous Leukemia (AML) Support Group

Update on Jimmy

robem
robem
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
mtnbyker
mtnbyker
I'll be praying for Jimmy, glad he got in another ski session before he started treatment. His fitness will help him get through the treatments as you know. My passion is cycling with alpine skiing being a close second. Spent a couple of years in Colorado right after college getting in as much as I could before I started my "real" life. He will beat this, please keep us updated on his progress.
DaveJ
worriedmom2014
worriedmom2014
I too will be praying for Jimmy.

Hugs and prayers.

Karen
dbrowncsuaedu
dbrowncsuaedu
Yes, we will all be praying for Jimmy and your entire family. By far this is one of the longest cases documented on this forum. it is amazing and gives us all courage not to be discourages when there are setbacks and bumps on the road. Please keep us up on how things go. -- daveB
Noodle65
Noodle65
Margaret,

Your journey by Jimmy's side is an inspiration. I went back and reread ask your posts back to your intro in 2013. You two are the epitome of perseverance. I pray for a tenth of your strength. You and Jimmy HAVEmy prayers. I've asked my congregation of about 2000 to pray for all in this amazing group of survivors, care givers and those healing from loss.

Blessings
Julie
xuelan
xuelan
Margaret,

I can only say that my prayers are with you and Jimmy and I know that he will conquer this once and for all. I love you both.

Cliff
robem
robem
Thank you all for your support. Things took a very rough turn this week, first Jimmy developed an E. coli infection in his picc line that had to be removed. He's been running fevers for a little over a week now and was having trouble breathing they did a CAT scan and he has pneumonia in both lungs and a swollen gallbladder along with elevated liver counts. They have him on oxygen and are giving him plenty of antibiotics and antifungal's to try and stabilize him but he was still telling me tonight that tomorrow he will be halfway through his one-month stay and he will be walking out.

Margaret
dbrowncsuaedu
dbrowncsuaedu
What a fighter -- Jimmy is an inspiration to all of us -- be sure to tell him that we are all praying for him and cheering him on. Sometimes when things look darkest it is right before the dawn. We are praying that this is the case. Thanks for keeping us up on everything. -- daveB
robem
robem
So much can change in a week. Last weekend things got really bad very quickly for Jimmy and now he's done a complete 180. The pneumonia is all cleared up and his counts are rising very quickly, they're talking about releasing him on Tuesday or Wednesday. The doctors cannot believe how he rebounded so quickly. They are going to wait a couple of weeks before doing another BMB hopefully this put him back into a remission and he'll be able to move forward with the DLI.
I hope everyone enjoys their memorial day and is able to spend time with friends and family.

Margaret
Noodle65
Noodle65
Such an awesome answer tho prayer, Margaret! I am sure jimmys quick recovery was due to his great attitude and his great physical condition. You two deserve good news. I'm praying for a clean bmb and smooth sailing to dli and I final cure.

Blessings
Julie
dbrowncsuaedu
dbrowncsuaedu
I love it when I can say: it is time to give thanks. For the care givers and the medical personnel, for you Margaret, and for that will to fight that God put in JImmy and each one of us. May all the glory go to God for all good things -- dave
xuelan
xuelan
Margaret,

When it comes to selflessness, you really take the cake! I am so happy to hear about Jimmy, and to sense the happiness and hopefulness of your words. You are the best.

XO,

CLIFF
robem
robem
Thank you for all the nice comments you guys are the best. Today is mine and Jimmy's 25th wedding anniversary and we had a great gift he was released from the hospital. Through the years we've talked about what we were going to do for 25th but I have to say this truly is the best gift we can be given.

Margaret
Noodle65
Noodle65
Margaret,

Such a great anniversary gift! My 25th is on the 31st and we too are just so grateful to God that we are blessed to be together. You two are such an inspiration!

May God continue to bless us all

Julie
hope2all
hope2all
Happy 25th anniversary Margaret and Jimmy! That's an incredible milestone! I'm so happy to hear Jimmy was able to go home on such a special day. We were blessed to celebrate our 18th last week and I hope to get to 25 too! Wishing so much for you both..Love and hugs xxx
robem
robem
We had our appointments this week with the hematologist for a bone marrow biopsy and Check-up. The biopsy came back clear with 4% blast and all blood counts in the normal range. We then went back in to meet with the transplant Dr. we thought to discuss the plans for a DLI but the Dr. feels Jimmy did so well with the FLAG chemo he is recommending a 2nd transplant. Jimmy's first reaction was No Way!!!! but is starting to consider it. The Dr. has everything set up with a tentative date set for July 10 it is exactly 2 years ago when Jimmy went in for the last one. He just doesn't know if he strong enough to go through it again and the last flag chemo really knocked him out but the doctor doesn't want to wait too long and give the leukemia a chance to grow back. I know we are in a terrible situation and being on the outside makes it hard for me to tell Jimmy what to do so I am asking all of you who have gone through transplant, would you do it again?

Margaret