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.
Since getting married, Jay and my daughter have actually lived and worked in a small town about 2 hours drive from here. My daughter commutes back and forth about every four days to be with Jay. That is probably the hardest aspect of this entire journey. When they have to be apart is so difficult on both of them. I am sure that all of you have dealt with having to be apart from your loved ones and know what that must be like. AGAIN......so grateful that I actually live a few short miles from the hospital and can visit daily even though I am no subsitute for Jay's loving wife.
Since Jay has literally spent over half a year in the hospital on various visits this past year, we have gotten to know several of the other regular patients on the floor. There is one young man that we have tried to take under our wing as much as possible. He also has AML with FLT3 and is being cared for by the onc as Jay. He speaks very little english and his family lives several hours away, so they only get to visit very rarely. My heart goes out to him especially and we have all made an attempt to try and keep him from feeling so alone as he goes through this journey. He is doing okay for now, but I do worry about his future as he will not be receiving a BMT. If you all could keep him in your prayers along with everyone else, that would be great.
So glad that spring has finally arrived (at least in my area...) and I hope and pray that all of you are doing well. I think of you all everyday and pray for you.
--Tina
Please don't ever, ever give up. FLT3 is beatable. The AC 220 is still in Phase 3 clinical trial. It is available post transplant relapse, but only in very few research institutes and even then you need to meet strict criteria.
I pray for the strength Jay needs to fight this horrible disease. Hopefully the sorafenib will get things handled again. Also, did they put him back on immunosuppressants at all? I had MEC , I did not think it was too bad at all.
The symptoms from sorafenib are just something I am going to continue to tolerate until AC 220 is finally approved.
Prayers,
Andrea
Thank You and God Bless Don
It would be great if your wife could get into the type of clinical trail that our Andrea was in. She did very well on AC220 and has now received her transplant. Is your wife being treated at Upstate Med Center? Let us know how we can help.
Cliff
I am so sorry to hear of your wife's diagnosis. You said that she has just finished her first induction with chemo? Is that right? Has she achieved remission? Jay actually received a consolidation treatment of chemo after his initial induction before he got his first transplant. I'm not sure if most people with FLT3 follow that same pattern or not. His cancer cells have since returned and that is why he is going through chemo right now. The goal being to get him in remission so that he can then move on to the 2nd try at a transplant. The FLT3 is such a problem maker, and the reason that finding the right inhibitor is so important. Let me restate that Jay's doctor was unable to get the AC220 for him. He is on the Sorafenib instead. This inhibitor has worked for him although he did have some side effects. Please urge your doctors to look into Sorafenib if the AC220 is not available to your hospital. If neither of those are possibilities for your wife, you may need to switch to a hospital where they are available. There are others on this site that are far more knowledgeable than I regarding these things. Please ask any and all questions that you have. People here will try and help any way that they can. I will pray for you and your wife.
Andrea,
I think Jay is in the same boat as you as far as the AC220. He will just have to deal with the Sorafenib for now. I don't know if he would even qualify at one of the other institutions, but I know for now he and my daughter would prefer to stay at Duke. They have a lot of faith in their doctors here and would not have the same circle of support that they enjoy here if they had to move. Obviously it may be something to eventually consider. As far as immunosuppressents, I'm not sure. It seems like he had them with his transplant, but I'm not sure if he gets them now or not. He gets lots of things, but I think they are mostly antibiotics. I'll check into that. Prayers for you that your side effects will be minor and short in duration. Please let me know how you are doing along the way.
--Tina