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.
Hi Everyone,
As a quick refresher, my dad was diagnosed with AML (with FLT3 mutuation) this May (2013). Since then he has had 2 rounds of chemo, both followed by very short remissions. When he relapsed after his second round of (very strong) chemo, he went on the Plexxicon trial at Cornell.
The Plexxicon worked well for a while but unfortunately, just a few days before getting admitted at Sloan for transplant, they found that his BMB had 49% blasts.
So now my dad is on a new regimen - Vidaza plus Sorafenib - at Cornell and once his blasts reduce, he will get his transplant at Cornell. So far, they have not done a biopsy and it has been about 3 weeks on this new regime. They are set to do the BMB next week and depending on the results, next steps will be determined. All fingers are crossed and every God and spiritual power is being prayed to!
I wanted to update everyone because (i) the Plexxicon DID work, even if it was just for a short time. It can be a bridge for a lot of people (as it was for Ed) and (ii) there are options. For example, this trial regimen. Also apparently AC220 v2 is coming out soon (in Philly I believe). There are options and we will continue to fight and to believe in a cure!
My prayers and best wishes to all.
As a quick refresher, my dad was diagnosed with AML (with FLT3 mutuation) this May (2013). Since then he has had 2 rounds of chemo, both followed by very short remissions. When he relapsed after his second round of (very strong) chemo, he went on the Plexxicon trial at Cornell.
The Plexxicon worked well for a while but unfortunately, just a few days before getting admitted at Sloan for transplant, they found that his BMB had 49% blasts.
So now my dad is on a new regimen - Vidaza plus Sorafenib - at Cornell and once his blasts reduce, he will get his transplant at Cornell. So far, they have not done a biopsy and it has been about 3 weeks on this new regime. They are set to do the BMB next week and depending on the results, next steps will be determined. All fingers are crossed and every God and spiritual power is being prayed to!
I wanted to update everyone because (i) the Plexxicon DID work, even if it was just for a short time. It can be a bridge for a lot of people (as it was for Ed) and (ii) there are options. For example, this trial regimen. Also apparently AC220 v2 is coming out soon (in Philly I believe). There are options and we will continue to fight and to believe in a cure!
My prayers and best wishes to all.
I have to thank you for sharing the latest for your dad's situation - Wishing him (and you!) the very best of results for bmb next week. I am sure that it will be such a relief for your family to move past this part of the protocol and on to transplant! I know that others will find your post very encouraging, too, given how quickly things seem to change from hopeful to worrisome, and back again to hopeful!
It is very encouraging to know that the plexxicon worked for at least a time!
Please keep us updated and let us know what we can give you by way of support.
All the best,
Robin
AC220 was my bridge to transplant. It is in phase 3, has been on the radar for 10 years. There were no side effects. I called it liquid gold. It was the only clinical trial drug that got me into remission. I know Ed has done well with Plexicon. I also realize this flt3 has a tendency to get drug resistant. I am praying that your dad gets to remission.
I remember my docs at Penn telling the docs at Temple, we will get her to remission and at that moment, you better be ready to go -no delays. It was a crazy busy time. I was in remission Dec 16, had a few more doses to take. My last dose of AC 220 was Dec 24. I went to conditioning for transplant on December 26. I am lucky hat my sister was my donor (half match and willing to be at the ready at any time too)
I am sure this regime will work. I am currently taking sorafenib as my inhibitor. I hope you dad is tolerating the side effects. Keep us posted.
Peace and hope,
Andrea
As we mentioned, just getting bridged to transplant is the goal. Ac220 now has a next level drug coming out which is supposed to b the best inhibitor. Sorafenib worked very well for Andrea who is now FLT3 negative a year post transplant, RIght Andrea? I am flt3 negative almost 4 months post transplant. I agree that when he is clear they should be READY to go. My Nurse practitioner said we should wait another week to get you a proper room and it was the first time I yelled at somone and said. NO, NO WAITNG. I AM GOING IN TOMORROW. And they took me. On the wrong floor for the first 5 days but I didn't care. I moved when the room opened up. Be vigilant. Be positive! I am confident he will get there.
xoxo
Ed
SBPH,
Praying for a great BMB for your Dad. Onward and upward!
CLiff
I too, was told once I went into remission, be ready to go. There was no delay. I finished AC220 last year on Dec 24 and started my transplant regimen on Dec 26 - they gave me Christmas Day. The transplant center and I all followed a calendar, making sure my platelets were were good for getting my port, I was set for radiation, etc. it was a very well oiled plan with a lot of coordination.
sbph, I am hopeful things will go as planned this time.
Peace,
Andrea
Yesterday was Day 0, where he received my brother's stem cells. Today is Day 1, and he will be receiving cord blood (he is doing a haplo cord).
He feels ok so far, but I know its just the beginning. What should we be looking for in the next few weeks?
Thank you all again for all your support - this is such a tremendous group!
All my prayers to all.
Warmest,
Ed
I am thrilled that your dad got to transplant. day 1. Exciting. I had a full marrow transplant, so I was zonked, but more than anything was being completely bored and waiting every day for blood work or a new movie to appear. I had a peddler bike in my room and would do Tai Chi (self taught in isolation). Otherwise, tired. Fatigue was big for me.
I am thrilled that the regimen helped. This is proof positive when I say, never, ever give up hope -always a backup plan. This makes me happy. Bring magazines, movies, etc. it helps pass time. I did not have the focus to read a book, but everyone is different.
Peace, love and hope,
Andrea
Congratulations! I am so happy the protocol worked and your dad went onto transplant. That is truly wonderful and special! I like the rest had an easier time with transplant than induction/consolidation chemo. I had some nausea and needed a transfusion or two but it was mostly the fatigue for me. I remember them coming into let me know I could go home and I said I was not ready! Too tired! I did my best to get up and shower everymoring and take walks 4x day. They had how many loops equaled a mile on the wall and that really helped. I mostly read, watched some TV and played cribbage with my family.
Take Care,
Suzanne
What great news! Full speed ahead! Happy Thanksgiving.
Cliff