Wednesday, March 18, 2015
This vids a little long, but man does it cover all. Dr. Bart is here in Seattle and is who works with Doctor Becker.
30-40% of the patients die from stem cell transplant?
Only 10% of the people with MF get transplants? Except in Seattle...
I like that this dude Bart is pretty aggressive in his approach with this as well.
The thing that gets me about the video is that these Dr's are THE Doctors in the MF field and their approach on how to treat it is all over the map. On top of that, look at the amount of views on this thing, 16 views and two of those are Lisa watching it and then me watching it. 14 views on a video of the top Doctors in the world recently (Feb) talking about how to treat MF?
Wednesday, March 11, 2015
So Dr. Becker comes in and see’s the number, gets on the phone, orders more tests then starts talking to me like I know what the fuck she’s talking about or thinking. Which for the most part I don’t. So I slow her down and figure out that the number 4 kicked her ass in gear and this whole ball that I’ve wanted to get rolling is now rolling. But there’s things that need to happen first before we get to the transplant. Myelofibrosis is pretty rare and to treat it, they used to follow the “protocol” of treatment for Leukemia, but since I got there, there’s a specific treatment protocol for Myelofibrosis. The first protocol is to save my spleen. So that $9,700 a month drug I’m on needs to be in my system for 8 weeks before they can do anything, so it’s a good thing I’m on it. 2 weeks on that shit now. Then I had a message on my phone that I didn’t listen to, that said they needed me to sign a bunch of consent forms so they could find a marrow match and get the pre approval from my insurance company. So I did that. That will take 6 weeks for the approval and to find the match. I also had to go back downstairs and give one more vile of blood to make sure I don’t have AIDS. Cause there not gonna try saving you if go got that going on. Anyway, the Dr. said that there were multiple possibilities of a match for me in the world donor bank and it was a matter of having insurance all set before they can ask the potential match to come in and give a blood sample to send to Seattle Cancer Care to match up to all my stuff.
So best case scenario is, we are 8 weeks away from getting the match going and starting this whole thing, but in reality it’s a 8-12 week process. Then once we get that rolling, I need to do a 3 week pre transplant thing, and I think this is where they chemo me out or something and reset me before throwing the donor marrow in. But right now they need to either shrink my spleen or remove it, and we’ll know what they are going to do in 6 weeks. Cause they can’t do the transplant if my spleens still large as they think it will take all the new cells and pull it into the spleen vs. letting them take in my bone marrow. So if I get my spleen removed then that adds a month to the transplant start process because they want you to heal first.
Short story long, it feels like the balls in motion. I’m on these magic pills for a reason I understand now. The Dr. has a plan. There are potential marrow matches out there. I can take my kids to Mammoth for the Launch and have a good time in April. I can go to Europe in May and do my partner meeting. And June/July I can slip away for a bit and take a vacation into Chemo Country and then visit the touristy attractions called dealing with Splenomegaly and the famous painting called Bone Marrow Transplant. And then when it all turns out good I’ll be back to being an asshole to all of you in 2016.