Finally got to meet Dr. Barker, the stem cell specialist. She was absolutely awesome, and I loved her. She gave me a lot of info, and made me feel a lot more comfortable with the idea of stem cell. I’m still not decided, but I’m feeling a lot better about things.
The Nitty Gritty
So part of what I’ve been wondering this whole time is: “Why the hell would ANYONE pick stem cell, if it’s 0nly 10% better cure rate, but has a crazy mortality rate?”
Well, the answer to that question lies in a few things.
So, the main detriment of stem cell is the straight up risk of mortality, which, for cord bloods, for all risk factors, comes out to 20-25%. Ouch.
Chemo, on the other hand, has a mortality rate of 1-2%.
So why would you pick Stem Cell ever? That’s what I’ve been wondering this whole time. Well, the rate of relapse for stem cell is ~11%. For my particular situation, it’s probably less (the 11% includes all forms of leukemia, including much more aggressive versions). Relapse rate on Chemo? ~55%.
So it’s now making a whole lot more sense to me why Roboz has been kind of pushing stem cell. Way more up front risk, but if you survive it, much more likely chance of survival.
About Them Risks
Some other things that Dr. Barker confirmed were basically an almost guarantee to get Graft vs Host Disease. 50% of people suffer some form of it. 20% of those cases are classified as “severe”, and 10% are classified as “really officially pretty bad”. With cord blood transplants, you actually want a little GVHD, but you don’t want *too much* GVHD. It’s a balancing act. You suppress the new immune system somewhat, but you want it somewhat wound because the way it cures the leukemia is that the donor immune system kills the leukemia cells, because they’re recognized as foreign bodies.
The downside of that is the potential for lots of varied bits of symptoms, from skin rashes to organ failure, to upset stomach. Because its a new immune system, it can basically attack anything it wants to.
One of the funny images I got from Dr. Barker was from her explanation of the cord blood procedure in the first place.
I had already known that generally, they take 2 cord blood units and drip them into you. What I didn’t really know is why.
The way Dr. Barker explained it.was as follows; first, when you kill the host immune system, then plop in 2 new systems, the baby immune systems have to duke it out to see which one wins, and gets to inhabit the donor.
There’s something about making the babies fight that makes the resultant winning baby immune system overall just straight stronger, even if you had guessed the winner correctly and implanted that one.
And there’s something about her saying “making the babies fight each other” that made it really hard to not bust out laughing. Amazing.
Another thing Dr. Barker talked to me about was the bit of conditioning chemo I would need to prep me for the transplant. Previously, I had been told that I would be getting crazy high dose chemo, even higher than what I’ve received previously, which also was called high dose chemo.
This chemo would basically lay me out, leaving me bed ridden for months, feeling real shitty and unhappy.
However, Barker said that now, with cord blood transplants, they’ve been having a lot of success with like a “high end of medium” level dose of chemo and radiation. She said people tolerate it much better, and while its still wildly unpleasant, it is decidedly less unpleasant than the super high dose. Much less frightening to contemplate. Though I forgot to ask about sterilization and whether this procedure would leave me sterile or not. I’m going to guess and say still yes, with a slightly higher possible chance of making it through with the little guys intact (there was a chance, albeit a very low chance, that I make it through the high dose conditioning chemo without going sterile).
It’s interesting because I never really thought I wanted kids. And I still don’t want one now (even if I wasn’t dealing with leukemia). But as cliche as it may be, something about being told I won’t be able to really sucks. Hence the trips to the “donation center”. Of which there is probably one more trip in my future.
The Long and Short of It
So, my mind still isn’t made up. But I’m starting to see why the argument for stem is so strong for a young person. I’m feeling more comfortable with it. I am less afraid.
I’m even leaning slightly towards it now.
All that remains is that Dr. Barker wants to run her own donor search, and see what her team comes up with, and see if she finds anything different than my previous cord matches. Then she looks at my specific available matches, gives me her opinion after discussing with Roboz and Tallman (my two main cancer docs).
Then I pick one of the two options and go forward.
There is a lot of dread here, but also a lot of hope. Hope that my chances of survival are better than I expected (11% relapse rate is way lower than I’d have expected). Hope that I could basically be done with worrying about chemo for a while (and that worry would be shifted to GVHD instead). Hope that I could be mostly recovered from all this, and have this stupid PICC line out relatively soon (5-6 weeks most likely if I do stem, as opposed to 4-5 more months with the chemo).
So those are the results of the meeting. She discussed a few other things, but they were pretty minor..I just have to say that I was pretty impressed by MSKCC, and I can already see, despite my limited involvement so far, why they are world renown for treating cancer.
That’s all folks. Look for another post from me pretty soon about insurance and paying for all this nonsense, plus another post once I make my decision for officials. Good you all enjoyed reading this one.
As I said in the hospital, you are one brave soul. Those were not my exact words, but people reading your blog might not understand my initial statement. Love you with all my heart
As I said at Sloan, you are one brave soul. Those were not my exact words but someone reading this might not understand my initial comment. love you ….
You did it right the first time Ma, I just have to approve each comment before they actually show up 🙂
So what are the chances of finding a live matched donor as opposed to the use of cord blood?
Hmm. Well for me, right now, they haven’t found any living unrelated donors, and my sister isn’t a match either. So there’s always the possibility that they find one if I wait long enough, but waiting kind of defeats the purpose of doing the SCT in first remission (where all the survival and remissions rates are best).
Glad the new dr was so great! and that she was able to ease your mind in some ways :). It sounds like you still have a lot to think about, but since you’ve gotten opinions from a few different drs, and support from your family and stuff, I know you’ll figure it out.
ps: totally bizarre about the baby ufc immune system series, but yes, funny when drs. break it down in normal terms 😛 it tends to break the tension when they’re less professional and more human
Yeah, my doctors have been really amazing at breaking down what’s going on, what we’re doing, and why. Granted, I also somewhat summarize/break things down when I write about them, but if not for my doctors, I doubt I’d understand this stuff half as well.
My family has been joking that I should go to med school when all this nonsense is done and over with, haha.
lol its true about the med school thing! you learn so much when you have to deal with it first hand.. some sort of crash course..
they say the brain doesnt learn as well under pressure, but i say thats a load of crap.
Agreed. There have been many a fellow (as in, someone doing their fellowship, not just a “feller”) who didn’t know my treatment plan as well as I did.
ahaha, yah, that’s the freaky part too sometimes!!! As long as the doctor is still receptive and willing to listen to you, its all good. the ‘fellows’ that wont shouldn’t be in control of people’s well being. you become an expert in your illness.
Most of the fellows at this point just listen when I tell them things. I’m not speaking out of turn, or pulling things outta my butt, so they tend to just kinda go along with what I tell them. Which is amusing…sorta.
Lol, yah, … “sorta” is right. there’s definitely a ‘right’ way to go about making yourself heard.. glad you got it covered 😛 🙂