So, more info about my transplant, as I'm trying to give my friends and family as much info as possible. I figure between here and Facebook, I should have everything more or less covered, heh.
Anyway, so! The transplant. What can go wrong? A lot of things. When you're matched with a donor, you may have a difference of genetic markers on any different level--it could be at the A marker, B marker, C, D, and so forth. A mismatch at the C or D level isn't so serious, but a mismatch at A is.
Guess where my mismatch is?
Yup, A!
So what does this mean? I'm at higher risk for GVHD. GVHD stands for Graft Versus Host Disease, and is pretty much exactly what it sounds like--when the graft (the new stem cells) attack the host. There are 2 kinds of GVHD; chronic and acute.
Acute is the more dangerous one, and can appear anytime after your transplant--anytime from within the first month to any point later in life! That being said, the most common time for acute GVHD to occur is within the first year, especially within the first 3 months (and most commonly the first month). Usually when it happens, the new stem cells attack one of these organs: the liver, the gut, or the skin. If caught fast enough, it's possible to treat GVHD with steroids. But my doctor explained there are cases where patients don't always respond to the steroids, and in those cases, GVHD is often fatal. Acute GVHD is one point where I am at high risk, because of the A-marker mismatch.
Graft Failure (when the stem cells all die and the transplant is a failure) is another possibility, but IIRC, not as big an issue as the extremely common GVHD.
Relapse is still an issue. Just because you get a transplant doesn't mean your cancer is cured. It HOPEFULLY is, but it doesn't guarantee you a free pass.
Secondary cancer (a new, different type of cancer!) is still another possibility.
So these are some of the complications of bone marrow transplants. The big one, though, is GVHD as it's so common anyway, and I'm at high risk for the "dangerous version". That being said, it's good to have *some* GVHD, as strange as that may sound, because having *no* GVHD at all could mean that your new stem cells are weak, and would not be able to handle a relapse if one were to occur. So my doctor explained that they try to aim for a little bit of GVHD with immunosuppresants; they want there to be some, but not so much that it kills you. It sounds weird, but it made sense the way he explained it to me. He's way better at explaining things than I am, for a large number of reasons, needless to say. ;)
There's also the chronic GVHD, but I'm going to talk about that one another time because this entry is already getting really long, and the chronic version tends to pop up later in life and not be as life-threatening. I'll write about it for sure, just at another time.
I hope I explained this stuff well! I might have made some mistakes, so sorry for that. I'm bad at explaining stuff in general; add in the fact that it's well past 2:30 in the morning and I've already taking my sleeping pills PLUS I've been forgetting things like crazy lately (yay chemo brain!), who knows how correct I've gotten the info here...hahha. But I try!
Saturday 29 June 2019
Saturday 22 June 2019
The BMT
BMT stands for Bone Marrow Transplant.
While I was admitted for the bad reaction I had from the chemo last time, I had my consultation with the BMT team, as well as attended the BMT class--everyone who's going for a transplant needs to do this.
The class was informative but nothing I didn't already know, as originally a donor match was tried to be found for me before, back in 2013, and the doctor in charge of that was really, brutally honest about all the things that go oh-so-dreadfully wrong with the transplant. These aren't the types of things you ever forget hearing about (and not to mention, I've been re-reading up on the whole BMT thing again all these years later now that I know I need one for sure), so really, not much I heard in the class was news to me.
What sucked was the BMT consultation itself. See, a few weeks ago (the day I was discharged from my second induction, actually), I was told that not one, but TWO donor matches were found for me. I was so shocked that they were found so quickly, because when they tried to find one back in 2013, it took them over a year to find any match at all, and when they did, it was only a 8/10* match; too risky, so they decided not to go with it (especially as I had already been in remission for so long, so the risks outweighed the benefits at that point). Well, now they had found me two matches in just a few months' time, and they were both 9/10s. I was pretty damn excited (needless to say), especially since this time it's CRUCIAL I get the transplant done.
Fastforward to a few weeks later, when we have the consultation, and the doctor tells me that the odds are pretty much against me here--that my donor matches aren't so good. I was pretty shocked to hear that (to put it mildly). Now, I know a 9/10 isn't fantastic--I know even with a 10/10, there are a TON of risks involved and there's no guarantee things will work out, so a 9/10 is even less likely to work in the patient's favour--but to say the matches weren't that great? Really?
He went on to tell me that an important antigen-marker was missing--with BOTH donors. It was my choice if I wanted to wait around for them to see if they could find a better match, but he highly recommended against doing that, as he had no idea how long that would take, and in the meantime, I could relapse again. My chances of relapsing again are high (as it's already happened once), and if I do relapse again, it would be disastrous for a number of reasons, so it's much better to take the chance and go with one of the not-so-good donors we have (he said he's choosing the younger one).
I don't have the date for my transplant yet, but in the meantime I have to undergo and pass like, a thousand different kind of physical tests. Oh, and probably go for MORE consolidation chemotherapy, so that I don't relapse in the meantime. What fun!
===
*The matches (out of 10) are how many antigen-markers are the same as yours...or something like that. I don't quite understand it myself. My doctor explained to me quite well, illustrating it on paper, but I can't remember anymore. It's some complicated DNA shit.
While I was admitted for the bad reaction I had from the chemo last time, I had my consultation with the BMT team, as well as attended the BMT class--everyone who's going for a transplant needs to do this.
The class was informative but nothing I didn't already know, as originally a donor match was tried to be found for me before, back in 2013, and the doctor in charge of that was really, brutally honest about all the things that go oh-so-dreadfully wrong with the transplant. These aren't the types of things you ever forget hearing about (and not to mention, I've been re-reading up on the whole BMT thing again all these years later now that I know I need one for sure), so really, not much I heard in the class was news to me.
What sucked was the BMT consultation itself. See, a few weeks ago (the day I was discharged from my second induction, actually), I was told that not one, but TWO donor matches were found for me. I was so shocked that they were found so quickly, because when they tried to find one back in 2013, it took them over a year to find any match at all, and when they did, it was only a 8/10* match; too risky, so they decided not to go with it (especially as I had already been in remission for so long, so the risks outweighed the benefits at that point). Well, now they had found me two matches in just a few months' time, and they were both 9/10s. I was pretty damn excited (needless to say), especially since this time it's CRUCIAL I get the transplant done.
Fastforward to a few weeks later, when we have the consultation, and the doctor tells me that the odds are pretty much against me here--that my donor matches aren't so good. I was pretty shocked to hear that (to put it mildly). Now, I know a 9/10 isn't fantastic--I know even with a 10/10, there are a TON of risks involved and there's no guarantee things will work out, so a 9/10 is even less likely to work in the patient's favour--but to say the matches weren't that great? Really?
He went on to tell me that an important antigen-marker was missing--with BOTH donors. It was my choice if I wanted to wait around for them to see if they could find a better match, but he highly recommended against doing that, as he had no idea how long that would take, and in the meantime, I could relapse again. My chances of relapsing again are high (as it's already happened once), and if I do relapse again, it would be disastrous for a number of reasons, so it's much better to take the chance and go with one of the not-so-good donors we have (he said he's choosing the younger one).
I don't have the date for my transplant yet, but in the meantime I have to undergo and pass like, a thousand different kind of physical tests. Oh, and probably go for MORE consolidation chemotherapy, so that I don't relapse in the meantime. What fun!
===
*The matches (out of 10) are how many antigen-markers are the same as yours...or something like that. I don't quite understand it myself. My doctor explained to me quite well, illustrating it on paper, but I can't remember anymore. It's some complicated DNA shit.
Thursday 20 June 2019
Irony!
Oh, the irony of my last post (written almost a month ago)!
OK, so a lot of things happened in the following days of me writing that post:
1. I found out I'm in remission! WOHOOO! Super SUPER important, if I want a transplant. (In other words: super SUPER important, if I want to live.)
2. I started consolidation chemotherapy. Meant to be done as an out-patient. I go home afterward.
3. Yeah, MEANT to be done at home. Notice the verb tense being used there. I had (yet again! Surprise surprise!) another bad reaction to the chemo (the worst so far) and ended up back in the hospital again.
I thought I'd only be admitted for a few days, til they could finish up the chemo and observe me, but I ended up getting stuck there for THREE FREAKIN' WEEKS. I had a couple of complications but they had all cleared up by the second week, so I was ready go home, but nope, got stuck there because my doctor wanted to keep me there while my counts were low, which made no sense because my counts would have been low at home anyway had I done the chemo at home as an out-patient, like originally planned! Arghhh! Toward the end I had to beg her like crazy to let me go.
As if that wasn't bad enough, I was put in isolation during that stay (yay!), but then they ran out of isolation rooms so they put me and another patient who was in isolation together. Yes, that's right, shared isolation. It was so fucked up. It was only for the last week, but that was messed-up enough, to put it mildly.
Anyway, I'm home now, and have been oddly feeling under the weather since I got home, despite my tests showing that pretty much all seems well when I go in for my many, many clinics. I've been trying to give my consent for the transplant to go ahead, but trying to communicate with the transplant team has been like pulling teeth. I have a consultation with them on Wednesday though, so hopefully that will get things into gear.
Ah, the transplant team! That's true. I didn't get to really write about that, because my initial consultations happened while I was admitted for my bad reaction to the consolidation chemo. OK, I will write about that in my next entry and explain everything.
OK, so a lot of things happened in the following days of me writing that post:
1. I found out I'm in remission! WOHOOO! Super SUPER important, if I want a transplant. (In other words: super SUPER important, if I want to live.)
2. I started consolidation chemotherapy. Meant to be done as an out-patient. I go home afterward.
3. Yeah, MEANT to be done at home. Notice the verb tense being used there. I had (yet again! Surprise surprise!) another bad reaction to the chemo (the worst so far) and ended up back in the hospital again.
I thought I'd only be admitted for a few days, til they could finish up the chemo and observe me, but I ended up getting stuck there for THREE FREAKIN' WEEKS. I had a couple of complications but they had all cleared up by the second week, so I was ready go home, but nope, got stuck there because my doctor wanted to keep me there while my counts were low, which made no sense because my counts would have been low at home anyway had I done the chemo at home as an out-patient, like originally planned! Arghhh! Toward the end I had to beg her like crazy to let me go.
As if that wasn't bad enough, I was put in isolation during that stay (yay!), but then they ran out of isolation rooms so they put me and another patient who was in isolation together. Yes, that's right, shared isolation. It was so fucked up. It was only for the last week, but that was messed-up enough, to put it mildly.
Anyway, I'm home now, and have been oddly feeling under the weather since I got home, despite my tests showing that pretty much all seems well when I go in for my many, many clinics. I've been trying to give my consent for the transplant to go ahead, but trying to communicate with the transplant team has been like pulling teeth. I have a consultation with them on Wednesday though, so hopefully that will get things into gear.
Ah, the transplant team! That's true. I didn't get to really write about that, because my initial consultations happened while I was admitted for my bad reaction to the consolidation chemo. OK, I will write about that in my next entry and explain everything.
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