My father was diagnosed with AML ITD FLT 3 mutation on 10/3/19. He had the aggressive 7 plus 3 treatment even though he is 75 then midostaurin for two weeks after. His first bone marrow biospy post treatment showed no cancer cells on 11/1. He experienced significant heart damage as a result with an EF of 25% as of a few weeks ago. We were hopeful his heart would recover since he had no previous heart conditions and that he would be then eligible for a stem cell transplant as his brother is a match.
Then a couple weeks ago he started having double vision and then this week facial paralysis. The doctors tested his spinal fluid and the AML has spread to his spinal fluid and brain (leptomeningeal disease). They started radiation on Friday and began injecting chemo into the spine this past week as well. He will have 12 days of radiation. In addition, a second bone marrow biopsy taken 11/21 showed there is still cancer in his bone marrow and we are waiting to see if it has the FLT3 mutation. If so, he will begin newer version of midostaurin that came out last year but I don't recall the name. If not, it will be another chemo drug that is probably less effective.
His doctors are "hopeful" that we they can get this "under control" and that they wouldn't be giving him this treatment if the benefits didn't outweigh the risks. I am not sure at this point, what we should be hopeful for....remission or symptom control enough so that he could go home for a while, a cure - is that even on the table anymore? It seems like a lot of treatment; he is inpatient and has been in a hospital for 95% of the past couple months.
He is afraid that he won't ever leave the hospital. My fear is that all of this aggressive treatment isn't going to work and it will destabilize him to the point where going home again even for a week or two won't be an option. I would like to maintain hope but I would also like to ensure we are planning properly (when appropriate) for end of life care so that he can go home at some point.
Thank you for any guidance or hope you can provide.
Good morning .....or is it good night as I am making a wild guess that you are in the USA.
So sorry to see you finding us and to hear about your dad.....this is a worrying time for everyone. Please remember that we are all people who have been effected by cancer and on the whole are not in the medical profession.
Some good information from . I also come from a different type of blood cancer..... Cutaneous T Cell Lymphoma (Skin Lymphoma) (CTCL) but can identify with some of the challenges you are all facing.
I lived with my condition for 14 years before 'full on' treatment was required....this you can see in my profile at Thehighlander......... but my condition became very aggressive so it had to be treated aggressively including two Allo Stem Cell Transplants (SCT) with cells from my brother. I was 58 and 59 during my two SCTs.
My team clearly told me (back in 2013/14) that the SCTs had to work as these were the only real options available (at the time) for getting me in remission and longterm life........ but if it did not work I would have a few years palliative/end of life care including 'Palliative Chemo'....... and this would be used to reduce as far as possible tumour growth and in turn pain control. Palliative Chemo is a thing in the UK and one way of dealing with aggressive cancers.
On the whole I was fit going into my SCTs but have now been left with a heart issue. If I get any infections (you get a lot after SCT) I would develop Atrial fibrillation (also called AFib or AF) is a quivering or irregular heartbeat (arrhythmia) that can lead to blood clots, stroke, heart failure and other heart-related complications....... but so far controllable.
What is the real goal behind the treatment recommended by your dad's team......and some more questions may need to be asked.
You may want to copy your post and put your thoughts to Caroline our Heamatology Nurse our Volunteer Expert but please allow 2 working days to get a reply as she does work full time in the care sector.
I don't know if I have given you any help but that fact that you are talking with people is help in itself.
