What the hell does "poor outcome" mean, anyway?
March 28, 2011 1:02 PM   Subscribe

My mother's just been diagnosed with "Philadelphia positive bilineal acute leukemia" and the internet is scaring the crap out of me. I'm hoping the hive mind can help me find the good news, understand the bad news and filter the ugly.

First let me say that I think my mom has a great team of doctors working to the best of their knowledge and ability to kick this cancer's ass.

I understand that because her cancer is bilineal (roughly 60/40 lymphoblastic/myeloid) there's no, like, set protocol for chemo; that they have to make a judgement call on how to treat it. What they've decided to do is Hyper-CVAD with Dasatinib to knock it into remission and then work toward a stem-cell transplant. This all sounds very promising to me!

And then I go out on the internet to try to understand the disease as she has it, and the phrase "very poor outcomes" keeps coming up associated with Philadelphia + acute leukemia, but most of the information I'm finding is case studies and research papers that are a bit over my head. And I'm scared, you know? Because she's over 60, and her white blood count was nearly 100k when we discovered this, and it's like everything I learn seems to be increasing her risk exponentially.

I want to be positive and believe she's going to beat this. I really do. But I'm finding it hard to get myself into that place without an understanding of the scale of the situation. So. What can you tell me about any of this, the disease, the Philadelphia chromosome, the drugs, anything?
posted by ApathyGirl to Health & Fitness (15 answers total) 4 users marked this as a favorite
I'm sorry to hear about your mother's situation.

I think by far the best thing you can do is go and get all your questions down on paper and then make an appointment to see your mother's doctors. They will be able to digest the research data for you and more importantly put it into the context of your mother's own case. I'm afraid unfocused internet searching is probably the worst thing you can do.

There are just two other points to make. Firstly research studies on both epidemiology / prognosis and treatment are completed, analysed studies. This means that what the best evidence says is by definition a few years old at the most, and the longer term 5 year survival rates etc. are even more so because of the length of the studies. I'm not trying to give you false hope but it is true that the best centres will often have results that are better than the studies say.

The best sites for public information tend to be cancer charities (e.g. in the UK Cancer Research UK and Marie Curie Cancer Care, it'll be different in the US). I would look at those to inform yourself about what to ask the doctors. Reading clinical research papers without a background in medicine and statistics is a futile exercise. Case studies are essentially anecdotes and from a scientific point of view are meaningless.

Good luck to both you and your mother.

(I am a doctor, but not Haem-Onc - I'm speaking from my own experience of a) having close family with cancer and b) what I tell people with those conditions I deal with myself).
posted by inbetweener at 1:24 PM on March 28, 2011

The Leukemia and Lymphoma Society was really helpful to me when my father-in-law was diagnosed with leukemia a few years ago. Give your local chapter a call.
posted by something something at 1:30 PM on March 28, 2011

IANAD at all: She might be a good candidate for Gleevec - its target is the fusion protein (bcr-abl) created by the joining of the two chromosomes of the Philadelphia marker. It's for CML, but here's the method of action via Wikipedia.

Again: I cannot say I am not a doctor enough times here. But the Philadelphia chromosome (a fusion of chromosomes 9 and 22) and Gleevec are a great example of how a cancer drug can work (verses other mutations much harder to target). Also, my uncle had it so I've always been fascinated by it.
posted by maryr at 1:31 PM on March 28, 2011

So, sorry, ignore the "she might be a good candidate" - if she was, your doctors would have looked at that, I imagine. Consider it just interesting reading.
posted by maryr at 1:32 PM on March 28, 2011

I can't answer any of your questions about your mother's disease, but I can tell you that I went through something similar with my younger sister, who was diagnosed with neurofibromatosis, type II, about a year ago. I'd never heard of it before and I used the internet to find out more and what I found (or what jumped out at me, I dunno) were the horror stories. Most of what I read said that existing treatments did very very little and that outcomes were generally unfavorable. Especially at the time, my younger sister's condition looked like it could be terminal within months and even the doctors were afraid of being optimistic and focused on very short, definable goals.

I almost wanted to imagine the worst at the time, just so I could prepare myself. But it ended up scaring me silly and the most valuable portion of that time was when I spent time with my younger sister and was actually present with her and we were enjoying each other's company. She is doing really really good these days - the experimental medication has done a lot more for her condition than what the studies on the internet seemed to indicate - but I really value the time we spent together, even if it was (and is) mind-numbingly scary.

Seriously, try to resist the urge to look through the internet late at night when you are scared and worried and do something for yourself like take a walk or read a book you wanted to read. Or, if you can't, take everything you read with an extra grain of salt and remember that your mom's doctors are your best source of information for the time being.

I hope that helps, I wish you the best.
posted by ajarbaday at 1:36 PM on March 28, 2011 [1 favorite]

Best answer: First, my best thoughts for your mother and the family.

I would echo the recommendation for contacting the Leukemia and Lymphoma Society, as they will certainly be a good source of information. Also, instead of trying to tackle all of the internet's information on your own, I would recommend speaking with a librarian at a library that specializes in consumer health. I'm most familiar with the Stanford Health Library, but if you're in LA you may also want to the Norwalk Library.

Speaking as a volunteer researcher at the Stanford library, I can tell you that they will answer requests for health information from anyone in the world (via phone, email, or in person). I don't know anything about the LA library, but it's probably worth looking into if your close by. While the libraries can't give medical advice, they will certainly help guide you to the best information available.

Again, best wishes and good luck!
posted by neurodoc at 1:48 PM on March 28, 2011 [1 favorite]

Best answer: I am sorry that you and your mom have to deal with this.
It is not the best of diagnoses, but things are by no means hopeless.

stem cell transplant-yes

Have her evaluated at a stem cell transplant center as soon as possible. Don't wait until 'now its time for transplant.' The transplanters should be involved early on. If she is in LA with you, go to City of Hope. It is the best transplant center in the area. Otherwise, check out the transplant centers at NMDP and make sure she is referred to one with good outcomes for ALL. Volume matters.

Take inbetweeners advice and write down your questions. Take it one step at a time. Make sure that someone goes with her to all appointments to help with information gathering and planning. Utilize all the public resources you can. Specifically check out the LLS and the NMDP.
For information on specific chemotherapy drugs the livestrong.org website is handy and they have a lot of other supportive information as well.

maryr: Dasatinib is a newer variant of Gleevec.

(IANYN-I am not your nurse, but I am a nurse working in stem cell transplant, and clearly biased towards City of Hope, but not without reason.)
posted by SLC Mom at 1:54 PM on March 28, 2011 [2 favorites]

"by no means hopeless"
Wow, that sounds bad. I am sorry. I should have my posting privleges revoked for a while.
Adult ALL is hard to treat. But HyperCVAD is helping to make great progress and we are seeing better and better outcomes all the time. The progress that has been made in the last 15 years is amazing. 20 years ago transplant was not even an option for people over about 55. Please try to keep yourself thinking positively, things are improving every day.

My best to you and your mom.
posted by SLC Mom at 2:02 PM on March 28, 2011

I can't answer any of your questions about your mother's disease, but I can tell you that I went through something similar with my younger sister...

Same here -- with my mom. She was diagnosed with a disease that affects two people out of a million. All of the information we could find online was dismal and basically told us that she had six months to a year.

That was four years ago. Her doctors found the underlying cause, surgically repaired it, and she now has a clean bill of health.

It's understandable to want to arm yourself with information, but please avoid using the internet as your source. It's great for gathering facts on a lot of things, but it's a horrible way to prepare yourself for the ongoing challenges of dealing with a disease. It's too easy to translate that information into an inaccurate prognosis. Talk to her doctors, then talk to more doctors if you need to. Do not consult Dr. Google.
posted by mudpuppie at 2:30 PM on March 28, 2011

I'm so sorry to hear the news, and my best wishes to you and your mom and your whole family!

I agree with the advice to try to scale back internet fact-gathering as much as possible -- I worked myself into near-hysteria for a couple of weeks last year after my colon cancer diagnosis because of the (skewed) picture I was getting for worst-case scenarios, virtually none of which have come to pass in my particular case (knock on wood). Do you possibly have a friend who's well-versed in doing medical research of any kind? Part of what helped me quit scaring myself silly last year was that I have a friend who was (at the time) an editor at a medical journal, so he was able to access the recent research and then filter the relevant info to me in a way that was genuinely useful without being terrifying.

Lots of hugs to you all.
posted by scody at 3:06 PM on March 28, 2011

Best answer: IANA medical professional. But I wouldn't be able to keep myself off the internet in your situation, so as alternative to all the advice that you should probably take upthread about not reading too much, here are cancer resources online that I've found reputable, comprehensive, and would recommend to a family member:

eMedicine is the clinical reference site of Medscape.com and has very up to date reviews of different diseases. Good risk, diagnosis & treatment info from a clinician-education perspective that's generally digestible by the educated layperson. Access is free, but you'll have to register.

NCI, the National Cancer Institute, has individual portal pages for different types of cancer, as well. These may be useful links for you, or helpful as a single site where you can send family members or friends. Here's the one for AML. If you go to the treatment options page, there are links to the NCI clinical trials database. That's a comprehensive list of all the trials being conducted in the U.S., filtered for AML and by patient population. Although it's a long list (109), there are only 3 Phase III trials open for newly diagnosed AML patients over 60. In my opinion, it wouldn't be unreasonable to bring a printout of those 3 trials to your mom's doctor and ask whether she would be a good candidate for any of them. (Again, NOT an oncologist here. But if I were focusing a search, I'd look at clinical trials over research reports and case studies - because they represent real resources that your mom could have access to if her cancer makes her a good candidate.)

Unsurprisingly, you'll find plenty of stuff on the web that's overly general, out of date, too case study like in nature, behind paywalls, or even misinformation. I'd urge you to limit yourself to known organizations like these and the ones mentioned previously, and agree with scody that if you can find someone competent to be your medical info guru and filter through it, do it! That'll let you focus on your mom's actual health and well being vs. the whole realm of possibilities (many irrelevant) that are described in the research literature.

Best of luck to you and your mom in a tough situation. I sympathize and know I'll probably have to deal with this someday myself. When the time comes, I plan to breathe deep and reread a short essay by Stephen J. Gould from when he was diagnosed with abdominal mesothelioma in 1982, plunged into the research literature, and realized the median survival time for the disease was only 8 months. He lived for another 14 years, so if you need some positive scientific perspective in the midst of all those outcomes statistics, take heart: The Median Is Not The Message.
posted by deludingmyself at 3:50 PM on March 28, 2011 [1 favorite]

Quick follow-up to my previous post. The health research libraries that I mentioned before will have access to the latest information that may otherwise be behind paywalls. Their research services are free to all, and will go a long way in providing only the most reliable information available.
posted by neurodoc at 7:39 PM on March 28, 2011

Response by poster: Thank you, everyone, for the kind words and very helpful advice.

My mom is, in fact, at City of Hope. Her doctor was in yesterday to profile her for potential full-blood donor matches, unfortunately she has no living family besides me, a 2nd cousin, and a half-niece. Because we're Euromutt White, he's confident we'll find a match in the National Registry.

Everyone who suggested the Gould essay - thank you. Thankyouthankyouthankyou. The really 'funny' part is that I'm currently taking an Intro Statistics course right now. It's like the universe is trying to help me understand the concepts by giving me real life personal examples to work with or something.

I'm going to sit down with my dad and look at resources from the LLS, thank you for that as well.

Thanks to all of you, I think I was able to sleep restfully for the first time in nearly two weeks, and I'm reassured that we're on the right track and that it's not unrealistic to think she can beat this.

Thank you.
posted by ApathyGirl at 11:51 AM on March 29, 2011 [1 favorite]

Response by poster: Update on Mom, for those following/interested:

First full round of chemo completed wth little to no complications. She looks surprisingly great bald. A little of the expected nausea and tiredness but overall tolerated it fantastically.
Post-completion bone-marrow biopsy and lumbar tap are clear of leukemia cells... so far.
They're letting her come home tomorrow for a week and then she goes back in for more chemo, a slightly different regimen I think. The word 'remission' has not been used yet, but I think we're close. Which means, as I understand it, that it's now a matter of keeping that Philadelphia chromosome in check and in remission until we find a marrow donor. Speaking of that...
She has "lots of potential matches worldwide" for stem-cell transplant and they're contacting and testing four really good prospects as all this other stuff is going on.

I'm afraid that if I say this out loud it'll jinx it, but it seems at this point like she's in the best possible position to beat a really tough diagnosis.
Thanks again for all the help, the LLS pages really helped my dad understand what is going on too.
posted by ApathyGirl at 12:37 PM on April 17, 2011 [1 favorite]

Response by poster: Update:
She had a stem cell transplant from an anonymous 25yo male donor on June 8th. The cells implanted so quickly that the small bit of graft vs host complication was initially mistaken for reaction to some pre-transplant chemo. By day 35, she was home and her blood and marrow tests came back 97% donor. No major GvH since.

She's now more than 100 days post, and her most recent tests show 99.9% donor blood, 99.9% male DNA and no trace of any Philadelphia markers or defects. We are cautiously optimistic that the worst is behind us. It's hard to believe it's only been 6 months.
Thanks, y'all.
posted by ApathyGirl at 1:31 AM on October 3, 2011 [4 favorites]

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