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.
Robin
I too am flt3 diagnosed about the same time as Jay and transplanted also in August. I really have no comprehension why some relapse. I went through the process with a fellow warrior at my unit also flt3 she relapsed at 84 days but is back in remission with sorafenib.
Transplant for me was ok but then I got every horrible thing that I could. GVHD, BK virus, para flu and now lung problems maybe that's what has kept me from relapse. This disease is so hard to understand.
I will answer any questions that I can, from my experience and my relapsed friends perspective. I wish I could offer more to you. On the up side I do know of a 13 year old girl flt3 who relapsed after transplant from sister and is doing fantastic with 2nd transplant from unknown donor.
I will add Jay to my prayer list.
Planxty
As a physician, I could go on and on with stories about how dark times during the therapies for a variety of malignancies soon became bright. Love and God have just got to have something to do with it. Andrea and you proved that FLT-3 is not as bleak as it used to be. Just look at the two of you. Superstars. I have been praying for Jay for the past 2 days, when I am not coughing myself inside out, and I just know that he (and I) will extricate ourselves from the quicksand we seem to have walked into.
Your sentiments got me right where they should get me....in the heart. Just beautiful. Just inspiring.
Cliff
Planxty--Your post was so encouraging to me! I pay special attention to each person that I hear of who also deals with FLT3. Apparently it is such a delicate balancing act to have just the right amount of GVHD. Enough to ensure the transplant works, but not too much that causes greater harm. Because Jay had no GVHD, it seems that may have been why his first transplant failed. To hear that you know of a 13 yr old who has had a second transplant and doing well, that is just music to my ears! I have read everything I can find and it is difficult to find stories of folks with second transplants, much less ones that seem to be working. Praise God for that young girl and I hope that she continues to do well.
Cliff--Thank you so much for your prayers. They mean everything to me and my family. I am adding you and each person that I meet on this site (and those whom I've only read about), to my prayer list by name. I am so thankful for all of you.
Right now we are waiting to hear back from the oncologist about Jay's admittance date. She is busy working on getting the AC220 drug approved for use along with chemo and hopefully getting Jay's insurance to go along with this. UGH! So much red tape. There is not a trial for this treatment at Duke, so she has to get approval from everyone to proceed. We are not worried as she is very assertive and very much a go-getter. If she wants something done, she will fight like crazy to make it happen. That's the kind of doctor she is. Meanwhile, I get to spend more time with the sweetest young couple that I know as they are staying with me while we wait to hear.
--Tina
I am flt3. I am currently on sorafenib post transplant. I was on AC 220 as part of the clinical trial which got me into remission. I had mild GvHD (skin and liver) which have both resolved. I did not have a match, so my sister was used as my half match or 70%.
How is it that Jay can be on AC 220? It has not been FDA approved.if at all possible, I would rather be on AC 220 as an inhibitor. I had 0 side effects.
I just had my 100 day biopsy today. This is quite a roller coaster ride.
I will keep Jay in thought and prayers.
Peace, love and hope,
Andrea
Tina
Yes,I have/had side effects from sorafenib. I wanted to give up on it, I was so sick and the symptoms were so bad, however, I knew from early on it was my insurance policy. I especially knew that since I was not eligible for another clinical trial, I had to just get by. I am still on the half dose and I am adjusting. I don't see that I have a choice. Given the aggressive nature of flt3. I have the hot hands and feet, headaches, stomache /lower bowel pains,etc.
I would hope Jay could get onto AC220. I wrote the manufacturer and FDA from a patient perspective. This drug has been on the table for 10 years now without approval. It has to be that another drug company is holding it up for financial reasons because there have been very few serious side effects and there have been no fatalities, though there was one reported case of heart issues. I was on a dosing protocol to see if the lower dose was as effective as the higher dose.
I am praying for you and Jay.
I had my biopsy today, so am a little sore at present and hoping for good results.
Peace
Andrea
Never lose faith and hope for Jay.
It's great to know that your children have such faith and courage.
Your'e obviously a big part of their support system. I am thankful, you are part of this group, I know we are all here for you.
I don't know too much about the FLT3.except it is more difficult to deal with. I hope and pray the doctor will obtain permission to use Ac220 for Jay. I know Andrea was put into remission really fast with that.There is another young chap Sammi Lahoud, who has been through 2 transplants, used AC220, he also has the FLT3 cytogenetics. He is currently doing fine. He has some problems but his hope and faith are keeping him strong.
Take it one day time,
We hope and pray for Jay, his wife and you,
your friends Sandra and Ben
psalm 27;14
Today Jay is being readmitted to Duke. I expect that his chemo with MEC (Mitoxantrone, Etoposide and Cytarabine) will begin tonight. Our doctor was unable to get the AC220. UGH! There are probably multiple reasons, but all I know is we can't get it. I'm not sure if it has ever been approved for use with a patient who is post BMT. In any event, the plan is that Jay will start back on the Sorafenib right away. Side effects or no, we have to try and stop the FLT3.
It was a bit of a subdued night last night for the family. The last night of freedom for awhile for Jay. We all watched and laughed our way through American Idol and then Jay and my daughter went out for his favorite milkshake from the CookOut Restaurant. I hope y'all have one of those in your area, because they make the best milkshakes and can always put a smile on your face.......just saying.
We feel secure in the knowledge that our doctors would not be sending Jay back in for this treatment if they didn't think there was a chance for him to be well in the end. I ask for your prayers for endurance and for a vision of a redeemed body and health. I will do the same for all of you!
--Tina
--Tina
You NEVER have to ask for our prayers, because you already have them. We are with you, Jay and your daughter all the way. But I have a request of you....I know that things get worse before they get better. It's kind of a "been there, done that" thing for those of us who have also gone through chemo and transplants. PLEASE...just keep us informed about Jay. A few words may well suffice. We just want to know that all of you are OK.
Jay was in my morning prayers today, and will continue to be.
Watch over him.
Cliff
I'm so sorry Jay did not get the AC220 approval. Hopefully he can tolerate the sorafenib this time. There are only 2 people in our country on this drug but it is working perfectly for them. Side effects yes counts all over the place yes but most important remission. I asked for this drug but could not get approval I wanted it as an insurance policy.
Also in relation to the 13 year old girl she also took sorafenib prior to 2 nd transplant, it worked and it will work for Jay too.
I will pray for strength for Jay.
Planxty
I was diagnosed last April also. I have been fortunate enough to stay in remission so far.
Much love and blessing to you all.
lily