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Sep. 9th, 2009 11:48 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
mrockwellWriting
*Submission, Electric Velocipede, 9/9
Everything Else
So I've had some time to do some more research (Did you know if you're not a medical professional, it costs $30-$35 a pop to get copies of articles in most medical journals? Talk about highway robbery!) and to talk more with Max's oncologist. The good news is that Max's prognosis probably isn't as bad as we initially thought. As his oncologist rightly pointed out, most of the published studies lump all the risk categories and/or all the stages together in order to have a large enough sample for their data to be statistically meaningful. So the percentages we've seen include High risk kids and/or Stage 4 kids, which naturally skews the results toward a worse prognosis.
That being said, he did admit to a 5-10% drop in 3-year EFS (event-free survival, or, basically, chance of relapse or progression in three years, which itself dramatically lowers the overall survival rate) for kids whose tumors have the unbalanced 11q LOH marker. For the sake of simplicity (and because when you're trying to reassure worried parents, you're going to give them the best numbers, so I'm skeptical about it being only 5%), we'll say a 10% decrease. So if Intermediate risk kids like Max normally have a 70-90% survival rate, that would be bumped down to 60-80% because of this marker.
However, from everything I've read, I think that figure is overly optimistic -- published study results range from the 30% figure mentioned in my hubby's tearful blog post to 70%, so the truth is probably somewhere in the middle, and, in fact, the bulk of the studies seem to center around 50%.
So, the bottom line is, we don't know what Max's prognosis is. It's probably not 30%, but it certainly isn't 90% anymore, either. So we will continue to do what we've done from the beginning -- take it one day at a time, and never stop praying for a miracle.
And, since my blog is in danger of becoming all-Max, all the time, let me introduce you to my latest newly-discovered namesake, Marcy the Monkey, one of the Skelanimals. That's right, zombies have gone mainstream! Now with embroidered bones! Heh.
*Submission, Electric Velocipede, 9/9
Everything Else
So I've had some time to do some more research (Did you know if you're not a medical professional, it costs $30-$35 a pop to get copies of articles in most medical journals? Talk about highway robbery!) and to talk more with Max's oncologist. The good news is that Max's prognosis probably isn't as bad as we initially thought. As his oncologist rightly pointed out, most of the published studies lump all the risk categories and/or all the stages together in order to have a large enough sample for their data to be statistically meaningful. So the percentages we've seen include High risk kids and/or Stage 4 kids, which naturally skews the results toward a worse prognosis.
That being said, he did admit to a 5-10% drop in 3-year EFS (event-free survival, or, basically, chance of relapse or progression in three years, which itself dramatically lowers the overall survival rate) for kids whose tumors have the unbalanced 11q LOH marker. For the sake of simplicity (and because when you're trying to reassure worried parents, you're going to give them the best numbers, so I'm skeptical about it being only 5%), we'll say a 10% decrease. So if Intermediate risk kids like Max normally have a 70-90% survival rate, that would be bumped down to 60-80% because of this marker.
However, from everything I've read, I think that figure is overly optimistic -- published study results range from the 30% figure mentioned in my hubby's tearful blog post to 70%, so the truth is probably somewhere in the middle, and, in fact, the bulk of the studies seem to center around 50%.
So, the bottom line is, we don't know what Max's prognosis is. It's probably not 30%, but it certainly isn't 90% anymore, either. So we will continue to do what we've done from the beginning -- take it one day at a time, and never stop praying for a miracle.
And, since my blog is in danger of becoming all-Max, all the time, let me introduce you to my latest newly-discovered namesake, Marcy the Monkey, one of the Skelanimals. That's right, zombies have gone mainstream! Now with embroidered bones! Heh.
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
Oh, Marcy...
Date: 2009-09-09 11:26 pm (UTC)Anyway, she got lots and lots of medical information without having to pay through the nose.
Re: Oh, Marcy...
Date: 2009-09-10 12:49 am (UTC)Re: Oh, Marcy...
Date: 2009-09-10 01:32 am (UTC)Email me separately and I'll give you my work addy. Might be able to access some medical info from there if I had the name of his condition in front of me. (At one point, the VA did subscribe to one of those databases, but I can't recall if we still do.)
Keeping it on Yes, We Can!
no subject
Date: 2009-09-11 01:24 pm (UTC)I'm a graduate student on a university campus, which means I have paid access to most if not all of the medical and scientific journals. If you'd like, I can give you my email address, and any time you want a journal article, just send me the link, and I can send you back the .pdf file.
You've all been in my prayers.