Hi I'm Majella 45 from Ireland
Dx may 12, M1 FLT 3 positive npm1 positive, I also had a biopsy in 2008 which was normal except for a JAK2 mutation at that point in time not much was known about this mutation .
I was treated with 7+3 induction, one round of consolidation and transplanted from a sibling in August 12.
Sailed through transplant released 18 days post but developed agvhd of skin and then knocked by the BK virus for 4 months.
Currently alive maybe not kicking too high but here. I have cgvhd of the skin but I know there is light at the end of this tunnel.

Welcome all and I'm sorry you had to join this group but were a friendly bunch.

Majella

Hello
I just celebrated my 50th birthday in the hospital during one of my chemos. I was dx with aml in November 2013 and went through 4 rounds of chemo - I was in remission following the first induction chemo and maintened remission ever since. I do not know my subtype-I do know however that my doctor confirms a favorable subtype and for now is not talking about bmt. I live in Montreal and am being treated at the Royal Victoria hospital. Other than being stressed out now and then I'm feeling good and am quite active.

Welcome Mary-Kathryn,

So glad to see your post and your update that you are doing well. As time poses and the trauma of the aml dx gets farther away, the fear of remission lessens. Being bless with a favorable subtype is just that, a blessing. Since we exchanged messages, my family has been praying for your continued remission.

May God continue to bless you
Julie

Dear julie
it's truly heartwarming to hear this, wishing you all the best as well

I am Kathy, caregiver and wife to Lou. He was diagnosed with MDS in Jan. 2012 and did well with Procrit shots for about 18 months. In July 2013, after a biopsy, he was diagnosed with AML and proceeded quickly to induction with about 50% blasts. He achieved CR and then proceeded to an allogeneic transplant on Nov. 8, 2013. He did well until July when another biopsy showed a relapse. He is now having Vidaza, although he has only had one injection. His counts have been too low to have the second one. We are trying to live each day as best we can and not dwell on the future, but that is sooooo difficult. It seems like blood counts have been our primary focus for 2 1/2 years. I learn so much from this forum and am astounded at the caring people. Thank you all!

Hi again everyone. For those of you not familiar with my background, I've just turned 54, from Long Island, AML M1 FLT3 positive diagnosed July 2012, difficult induction and one consolidation round, transplant from my sister December 2012. Some chronic GvHD but currently off all immunosuppressant drugs. Have slowly returned to my former life with some exceptions. Currently struggling with what seems to be an interminable case of shingles. To all the newcomers, I'm sorry for your diagnosis but there is hope and we're all here to support you during the tough times.

Lou

Hello, I am a 53 year old male from Lansing Michigan. I was diagnosed in July 27, 2013 after feeling weak for about a month. I had went to my family doctor 3 times to try to figure out what was wrong with me as I kept getting progressively worse. It finally got to the point of me being out of breath just from my morning shower so my wife insisted in go to the emergency room. They got me right in, took blood, and came back approx. 1/2 hour later and told me they thought I had Leukemia. Got admitted that day and was receiving chemo the next. Went straight into remission and stayed that way clear through transplant which I received from my brother on December 27, 2013. Had some rough times through the treatment but nothing compared to what some have been through. Today I feel great, actually better than I have for some years, and am in the best physical condition I have been in since my 20's, early 30's. I still struggle with gvhd and stomach issues but have no complaints. thanks to the power of prayer and the brilliant caretakers I have (and my family of course) I am alive nearly 8 months post transplant and am living a normal life. The people of this site have given me great comfort that I couldn't have had otherwise. It's comforting to know others have been through this nightmare and are doing well. Pay no attention to survival rates, they just do not matter. And put your trust in the lord Jesus Christ and your caretakers. Do what they tell you when they tell you. Has worked for me very very well.

DaveJ

Hey all, someone linked this post for me, so I thought I'd give it a bump. My 18yr old son was diagnosed with AML on 5/24/15. His full diagnosis is AML M2 with FLT3-ITD-TKD and NPM1 with normal cytogenetics. Yep, he has dual FLT3 mutations. When diagnosed he had a WBC of 78,000 with 80% blasts. He began treatment immediately and went into remission after his first round of induction chemo. He has now had his 1st round of consolidation chemo and is doing quite well. He was supposed to have an allogenic transplant, but we just found out yesterday there are no matches. So they are looking at doing a haplo transplant instead. My husband and I will be tested and possibly his 2 sisters. They are only half sisters, so have reduced chances of being a half match. Looking forward to our next meeting with the transplant team to learn more.

Momma -- it sounds like things are going will under the circumstances -- be nice if you could hold out for a match, but if not they you gotta do what you gotta do. If the first one does not work there is always a fallback -- a few on here have had a second transplant -- but let's pray that the first one works well. Take care -- daveB

My 75 year old mother was diagnosed with AML 7/3/15, began induction chemo immediately and was hospitalized for 30 days. She was home for 8 days and goes back today for her first consolidation chemo. It is still a bit shocking and very hard not knowing what to expect. We keep 2 family members with her at the hospital round the clock. She'll be in the hospital at least 5 days this time and it's scary thinking of her coming home so soon.
She also has ACCL, but we're not supposed to worry about that now.
It's still so new, I don't even know what to ask!
-Katherine

Hi

My Mom was diagnosed in April 5 2014 with AML Acute myeloblastic leukemia with maturation M2 with Del chromosome 5, She was 66 Years and Doctors in El Paso did not want to give her 7 3 chemo so they refer her to MD ANDERSON we went to and she was put in a clinical trial with SGI-110 after 3 moths she was in remission and in September 17 2014 she had a transplant with a 10/10 Donor sister. she was having some infections in the blood but in MD ANDERSON they were great tacking care of every little problem related to the low blood counts. Now she is one month from the the 1 year mark and she is in another clinical trial with Vidaza to help her reduce the chances of relapsing. Looks like everyday she is getting well. So pleas to all the new persons in this journal never give up hope, always remember God is always with you and he will take care of you.

That is very interesting, my doctor considered putting me on Vidaza after transplant as "insurance". Post transplant maintenance is not usually the protocol in AML patients but this trial clearly is designed to see if it should be. Let us know how she is doing from time to time. Good luck.