I am 71. I was diagnosed with Myleodysplastic Syndrome in 2016. It is considered a bone marrow cancer and is somewhat related to but not leukemia. Certain MDS patients may convert to acute myloid leukemia AML. I won't. I don't qualify for a bone marrow transplant. Essentially it's a death sentence with no particular end date. 3 to 5 years maybe, but I had this long before it was actually diagnosed. There is no cure. I don't have any of the handful of certain genetic abnormalities they do know certain drugs will extend life. Typical comments are "trust God," "keep the faith," " remain hopeful and live your life to the fullest." First, what hope is there when you already know the end game? Live life to the fullest when one has become barely mobile and is facing this essentially alone. This is taking a toll on my little brother's health. He calls 2 or 3 times a week but lives out of state. My sister's top priority is my 94 year old Dad who has been in hospice since December and will likely outlive me.She made it clear from the outset she is not a caretaker. Her other priorities are her husband who has medical issues and adult sons who are already financially independent and focused on their own families. A really sore point since family members who are doing just fine financially will benefit by $$$$$$ amounts if I don't outlive him by at least 30 days and until assets are distributed, long after my death. When I pointed this out to my sister, who is my only option as executrix, she snarkily replied that I should have gotten a job with a large corporation, remarried, etc. Not like I didn't try and kept getting setbacks because of all sorts of unusual medical issues that ate up savings as I managed to accumulate some. No amount of $$ will help me at this point, but still it should be mine to decide what to do with. Sound tacky? My Dad doesn't even ask about me and I've been told not to tell I'm apparently. I don't qualify for Hospice because they don't administer transfusions, which has been the only thing keeping me alive for 2.5 years. I just need them more and more often. I was in a 16 month clinical trial at MD Anderson in Houston with one of the top MDS doctors in the country. Other than getting some darker streaks of hair, it apparently had no effect one way or the other. Trips to Houston every 4 weeks were frustrating and exhausting. I got to where if the appts allowed, I'd fly down first flight out in the morning and fly back at 5 or 6 or 7. It's a 1 and a smidge hour flight. SW is the greatest and most helpful airline ever!! I've just started at new clinical trial at UT Southwestern in Dallas (5 minutes past the exit to Love Field). On a good day it's a 25 and 35 minutes. It's taken as long as 1.5 hours.
As for transfusions, I've had 43 so far, maybe more. I lost track of the count at some point and had to reconstruct the list I keep. Something like 73 units. I always say a prayer of thanks for each person and wonder who he or she is. Whether I've received blood from the same person before. It's always extremely humbling. If you have given blood, or white blood cells or platelet know with absolute certainty that almost all recipients thank you for the bottom of our hearts.
Actually, there very little left to do for me and essentially I am dying. I had hoped this new trial would have SOME, ANY positive results that would add months to my life. Instead I've had a rare and bad reaction to the Entinostat chemo and my blood counts have tanked. Turns out Yale, running the study knew it was an uncommon (rare) side effect and didn't even list it as a possible reaction. I'm pissed! The several page consent which lists the other potential side effects, also includes the "and death." I've only had 3 doses and some of my counts have already dropped by half. No one can tell me if they will come back up. I feel like I'm just pushed much closer much much faster to the end date. I'm supposed to start an immunotherapy drug this week. I don't know what I'm going to do. Its commercial name is Keytruda (same one they adertise). It has its own set of side effects, most of which issues I already have. No one can tell me whether they will be exascerbated. I just react weird to meds. They call is by a diminutive name of it official drug name, Pembro. It was developed at MD Anderson by the doctor which won the Nobel Prize for it this year, with input from my doc in Houston. In fact, if I had had any positive reaction to 3 days of azacitidine (Vidaza) in the previous trial I'd be in Houston getting 7 days of Vidaza along with Pembro there. Only I'd have to move to Houston, where I know no one and family would likely never visit, because of the scheduling. Vidaza makes me sick. Zofran to reduce the nausea causes me horrible constipation. If I drop out of this trial, I MAY go back to Dr. Garcia-Manero any way,
I have been transfusion dependent since diagnosed. The purpose of both trials is to reduce the frequentsy. I now require red blood cells weekly and might require white blood cells and platelets due to this damn chemo. It's up to me when to call it quits.
Oh, and I can't actually afford to die. Funerals cost just too damn much and the directors claim about a 3rd of the expense. Scam!