Acute myelogenous leukemia : Lost

[mexvinch]

hi all.

My elder brother is 27 years old and he was diagnosed with CML in November 2009. we went to a hematologist and my brother was put on Gleevec to be taken orally. We were told that Gleevec will help control/supress the disease from spiralling out of control. Things went quite well at first but come August 2010, for some reason Gleevec can no longer keep his leukemic cells low and his WBC goes up quite high. The doctor says that probably the leukemic cells have grown resistance towards Gleevec and he recommended a new drug called Tasigna to replace Gleevec. Tasigna works alright initially, not too great but ok (according to the doctor). However in February 2011, my brother had a major blast and the doctor rushed him to do a chemotherapy to wipe out the leukemic blasts. As soon as the WBC and his bone marrow test was under control, my brother went straight to do his Bone Marrow Transplant. He responded very well to all the follow treatments thereafter however on T+60 after engraphment (somewhere in June 2011), he suffered another blast. According to the doctor the transplanted stem cells has already taken over by more than 98% and the doctor was very confident that my brother will be alright. The doctor could not give us an explanation to why did things suddenly got so bad. My brother was rushed back into the hospital and the doctor told us that he will be giving my brother a treatment called DLI or something like that which involves chemotheraphy and further infusion of stem cells. About 3 weeks after the DLI, my brother suffered yet another blast......! The doctor told us that he's running out of options and asked us to prepare for the worst.... that was yesterday and he ask us to choose and give him permission to use one of these drugs Vidaza OR Revlimid. My brother's kindney is affected by the the antibiotics he's on, Revlimid is out of the question. We opted for Vidaza. Im really upset to see my brother suffering like this and to make things worse i cant bear to see my the pain my parents are in. I guess what im really asking here if anyone has heard of similiar cases and if anyone who is on Vidaza and if its working. I dont know who else to ask, im not exactly knowledgeable when it comes to medical matters, i wish i know more but i just dont. thanks.

[cheri]

Try Vidaza--there have been some studies where it may have a positive affect on AML....I tried it and it wasn't bad...I feel it prolonged my life somewhat, but then I had to stop....

Everyone on this site will tell you what an emotional roller coaster dealing with a blood disorder is! Virtually everyone is on the same train but in a different car....each one of us has unique experiences....
Your brother has had quite a time of it, and he is so young...how does he feel?
Keep on trying...where there is breath, there is hope!

[mexvinch]

thanks. the vidaza did not do its job.

my brother passed away 10 days ago due to "electrolyte imbalance". got very hard for him to breathe and his oxygen level went plummetting within minutes and the next thing we know he just collapsed and never woke up.

[cheri]

I am so sorry to hear about your loss....your brother was far too young.....
This disease is horrible and leaves a trail of broken hearts....

[Neil Cuadra]

I'm very sorry that you have lost your brother, mexvinch. I hope he knew how hard you were working to help him by gathering information and learning to understand the doctors. It's such a shame that even the best treatment, including a transplant, couldn't get him through to recovery, even more so because he was so young. You have my sympathies and I hope you have good memories of the years before CML entered your lives.

[JodyW]

I am very sorry for your loss. Very sorry.

[freedom99]

To Mexvinch;
My sincere sympathy for your loss.
My prayers are with you today to help you are your family through this most difficult time of grieving.
May in time the memories of your brother become more and more precious to you and your family.