My husband had GVHD of the gut and upper intestines. He was treated with massive doses of steroids! He had an experimental procedure where they injected the steroids directly into the area affected through a vein in his groin! That had good results! He later became steroid refractory and was given Remicade (not sure of the spelling) infusions every week which helped some! Keep your brother up and moving as much as possible. Get him to sit up as often as he can and exercise his muscles! GVHD is a tough one! Keep him moving and keep on fighting!

CC, Keir also has the FLT3 TKD. It is a horse of a different color, so to speak, when it comes to many things. It has essentially been determined not to be the same prognostic risk (chemo resistant) and also doesn't respond to inhibitors. Some doctors do not feel it puts one at greater risk at all of relapse and so don't consider it necessary to go to transplant if that is the only issue. We decided to go ahead anyway since keir had intermediate (normal) chromosomes and his doctors preferred transplant under those circumstances. Once they get the gvhd under control are they looking at a second transplant for your brother?

His UCLA oncologist team as well as the first set of oncologist who diagnosed my brother thought the transplant was a good idea and should have had a good outcome. They were all surprised at the early relapse. At UCLA they will not do a second transplant as it seems almost unethical due to very high failure rate.
Presently if the ghvd is under control the team doesn't have any really other treatments but give him palliative care and Hydrea to control the WBC. So when I researched the trial it seems hopeful as we have absolutely no other choices. This has been such devastation since everyone has been so hopeful towards the transplant procedure. I've been trying to research flt3 TKD and there seems to be almost none.

Thanks for the suggestions. He's currently on iv steroids and I just researched a HIV drug called maraviroc which I suggested to the team. ( I'm trying to grasp at straws for any help) I will try to keep my brother moving although he is very weak.

What does TDK mean?

tyrosine kinase domain, it's a point mutation. ITD means internal tandem duplicating. There have been many many studies done on the prognostic implications of the ITD mutation, fewer of the TKD. The general conclusion is that the ITD tends to be chemo resistant and put one at higher risk of relapse, the TKD seems to have no prognostic implications they can agree on and is generally not a huge factor in their decisions about transplant or treatment. One person here had it and went chemo only, Keir had it and did the transplant.

Thx Lori. Clear. I know bro is flt 3 but that is as far as my knowledge goes. Early on they said transplant so guess it is ITD if I understand correctly.

Btw my bro was on the trial with 2215 to get him ready for transplant.

Thank you Lori for a great explanation. Most of all the research is for the flt 3 ITD because of the poor prognosis but at this point I think that flt3 TKD is even worse because it seems almost resistant to everything. And because so little research has been done the team is at a loss of what to do.

On a positive note, my brother ate one bowl of noodles today as well as yesterday and walked two laps around the unit. ( I took your Advice). This is the first time he has kept anything down in three weeks. Thank God for little improvements!

Actually we are not sure if the clinical trial for asp 2215 may be closed to flt 3 TKD patients since this is a phase 1 trial. If so, we are just praying for a miracle as we have no other options. We will just leave everything in God's hands.

My mom is in the 2215 trial in NY and her blast dropped to 0 in a week even tho she had been removed off the drug for high liver counts but turns out it was her antifungal. She again went on the drug for another week and her labs look great but she is 30 pounds heavier from fluid and orthostatic and has massive diarrhea. Just been removed off the med today to see if the bowls improve. Now she has some sore on her bottom which have resistant bacteria in them so we are hoping to get that under control. She is so tired but her labs are great. So hard to say what is next for her. I pray for everyone facing these difficult choices. If anyone has had any of these symptoms after taking 2215 please let me know. My father is searching for answers and the least I can do is help find them. Thanks

Thanks Michele for the update. UCLA still has not started the 2215 trial. In the meantime my brother oncologist has restarted the vidaza +. Sorafenib regimen since it had dropped his blast count a lot before.