Okay it was good news, bad news so I'll cut to the chase .. not to much rambling. After DNA testing on my bone marrow aspiration, the good news is that my T-cells (the basic building blocks for my blood creation) are my donor's cell's. So my blood and immune system are the new, good cells. Yay.
It's been confirmed again that my fibrosis had returned and the fibrous structures in my marrow are crowding out the good cells. I guess the recent reduction of the immunosupressant (and subsequent releasing of my new immune system) did not attack the fibrosis. I knew that, because I still had not had any other symptoms of the Graft Versus Host Disease we expected.
On to Plan B.... Donor Lymphocyte Infusion.
In simple terms ...get the original donor, collect some of his Lymphocytes in a bag, give the bag of cells to me. Simple. In reality it involves convincing my lovely donor sibling to take a tropical vacation that includes sitting in a chair hooked to a machine (like dialysis) for some hours and then enjoy Queensland while I sit in a chair and get an infusion of lovely cells. then they watch me for a few weeks, take blood tests etc until I have reduced fibrosis.
If it doesn't happen at that strength (lets call it concentration Y) then they have cleverly already collected the next one up, Y x3 and if that doesn't work then they give me concentration Y x9 and so on.
Doc Shoozenbootzen called them "angry cells". I guess they are pissed that they got uprooted from a nice comfortable environment and then they are thrown into this new somewhat familiar environment, "all good here..hey red cells, how you going white cells....but wait that's not my regular looking veins and arteries, and what's that lung! That's not my regular lung and this is not my regular heart! What the hell's going on here, the marrow has this stuff in it.... I'm pissed and going to F**k up something and I'm going to start here with this gunk!
Well his explanation was more medical but I'm sure that what the process is.
Yes yes I can hear you asking .."but that sounds like the transplant you already did?" It is NOT at all like it.
a. The donor does not get growth factor over four days to rev up cell production and therefore does not get flu like symptoms.
b. The cells taken are Lymphcytes not T-Cells (bone marrow cells).
c. I don't get chemo to kill off my old T-cells.
d. Since they are already similar to the blood cells I make now, then there will be less complications and unpleasantness (like my having to take steroids and dex and making my wife crazy)
So any questions?
more later
Chris
Saturday, April 28, 2012
Wednesday, April 18, 2012
what happens in the Procedure Room stays in the procedure room.
Look I really want to tell you all what happens but I can't. No I'm not sworn to secrecy by a pact with my cult pals...no I'm not under threat by government forces.....
Its just about the sedation! i can't remember!!!
Bluey remembers and then tells me stuff like I should know or remember, they gave me my first sedation shot and I remember it going in to my drip but that's it until I woke up a few hours later. No Joyce I don't remember Dox Shoezenbootzen coming in... I don't remember the long conversation we had "what about?"I said "just about s**t" Bluey said. No I don't remember whine like a kid when the needle set he had in my hip bone was faulty and had to be redone. No I don't remember hearing a radio pass by the room and saying " Is that radio? Hey I can hear radio on my fillings!" and freakin NO I CAN'T REMEMBER talking a 100 miles and hour to ANYONE that came into the procedure room about ANYTHING.
Apparently I'm hilarious and chatty to all the staff.
So apart from that what's up.
I'm pretty sure that my bone marrow is not up to scratch, and that something has to be done. As usual we don't get to talk with the Doc about the what ifs until we have all the data and this time it means a cremea test or a climation test or a climidia test. I'm pretty sure its not the last one, but it sounds like it. Any way part of my bone marrow (that was savagely torn from my butt when I was turned the other way, BTW) will be sent off to the scientists at the Royal Brisbane and Women's Hospital.
---- Lets take a minute for eveyone to chuckle about me going to this hospital....all done now? back to the story----
Anyway we have a return appointment to talk to the doc about it next Tuesday. So more on this topic at that time.
In the meantime attend the tale of my brave sister-in-law and her husband Eugene and sister Bluey, and me.
All four of us are here in Brisbane because said sister, nicknamed Yoda, is in Intensive Care after her operation to remove parts that were damaged due to cancer or were surplus to needs. We have spent a couple of days camped in the ICU waiting room taking turns sitting with her but she is getting stronger everyday and will be on the ward shortly. She has made great strides in overcoming this disease. The chemo worked a treat and the surgeon is very happy with the op. She thinks she should be stronger then she is. Is that sounding familiar to anyone? anyway we are here for another 10 days we think.
Lots of time to think...read.....remember (well not me, but you can remember)
More later
if I remember....
Chris
Its just about the sedation! i can't remember!!!
Bluey remembers and then tells me stuff like I should know or remember, they gave me my first sedation shot and I remember it going in to my drip but that's it until I woke up a few hours later. No Joyce I don't remember Dox Shoezenbootzen coming in... I don't remember the long conversation we had "what about?"I said "just about s**t" Bluey said. No I don't remember whine like a kid when the needle set he had in my hip bone was faulty and had to be redone. No I don't remember hearing a radio pass by the room and saying " Is that radio? Hey I can hear radio on my fillings!" and freakin NO I CAN'T REMEMBER talking a 100 miles and hour to ANYONE that came into the procedure room about ANYTHING.
Apparently I'm hilarious and chatty to all the staff.
So apart from that what's up.
I'm pretty sure that my bone marrow is not up to scratch, and that something has to be done. As usual we don't get to talk with the Doc about the what ifs until we have all the data and this time it means a cremea test or a climation test or a climidia test. I'm pretty sure its not the last one, but it sounds like it. Any way part of my bone marrow (that was savagely torn from my butt when I was turned the other way, BTW) will be sent off to the scientists at the Royal Brisbane and Women's Hospital.
---- Lets take a minute for eveyone to chuckle about me going to this hospital....all done now? back to the story----
Anyway we have a return appointment to talk to the doc about it next Tuesday. So more on this topic at that time.
In the meantime attend the tale of my brave sister-in-law and her husband Eugene and sister Bluey, and me.
All four of us are here in Brisbane because said sister, nicknamed Yoda, is in Intensive Care after her operation to remove parts that were damaged due to cancer or were surplus to needs. We have spent a couple of days camped in the ICU waiting room taking turns sitting with her but she is getting stronger everyday and will be on the ward shortly. She has made great strides in overcoming this disease. The chemo worked a treat and the surgeon is very happy with the op. She thinks she should be stronger then she is. Is that sounding familiar to anyone? anyway we are here for another 10 days we think.
Lots of time to think...read.....remember (well not me, but you can remember)
More later
if I remember....
Chris
Thursday, April 5, 2012
Hmmmmm
Okay so I had a littl trouble last week. I had a bit of a sprain, my leg ballooned up, sore throat, headaches for days and nightnsweats and the occasional pain in gut so I called Doc Shoozenbootzen and then tagged along with the Jo trip in to Brizzie Momday Tuesday. ?by that time the symptoms had changed and we agreed that 1. I sprain my leg and the swelling was only part of that, an over reaction but okay. 2. My sore throat and possibly the headaches were from a viral event.3 the headaches were possibly from bad hydration because I did a lot the weekend before and night sweats. 4 abdo pain gone huh.5. My bloods show no bad news my fibtrosis has not done a rapid escalation. Yay
Then I get phone call from the docs office saying he saw something in the second part of the bloods that he wants to check out, come back in tomorrow! Good thing this was Monday and we already were set to stay the night.
Went back in and waited, had more blood taken and waited... Oh it's okay, a trend he saw, changed in the last test and it's okay now!
More later
Chris
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