AML ?'s

MiraT said:

I'm very sorry to hear about your sister's diagnosis. I'm 20 and was diagnosed with AML in July, so I know what you all are going through right now, it's such a shock to hear those words, and so frightening.

Fertility. AML induction and consolidation drugs rarely cause infertility in young women - certain classes of drugs have more of an effect than others, and the AML drugs aren't the ones that always do. The risk is that they will cause early menopause, or premature ovarian failure. Apparently the chemo kills off the "primordial follicles," or non-mature eggs, and whenever your store of eggs is exhausted that's when you get menopause. So, since older women have fewer eggs, they are more at risk to go into menopause immediately following chemo. However, since younger women still loose some eggs, they go into menopause earlier than they normally would. Now, in the case of BMT, early menopause will pretty much always happen, I think because the chemo is so much more intense and also just because of all the other effects of the transplant.

From what my family has found, Seattle seems to be the best hospital for transplant. Are you definitely going for transplant? Have you gotten a second opinion on that?

One of the number one factors in prognosis for AML is age - the younger you are, the better chance you have, and your sister absolutely has age on her side. When I was first diagnosed my doctor told me that the best thing you can do for yourself during treatment is to have an upbeat attitude, it makes everything much easier to deal with. So I guess right now I would suggest trying to take your sister's mind off of the diagnosis and treatment, since it sounds like she's having a hard time with it. Try to keep her entertained with things she likes to do (I did a TON of puzzles in the hospital, those are great). There is so much hope with a diagnosis of leukemia, they have made so much progress in treatment. My mom, who is a research scientist and works with chemotherapy, says that whenever people say they've made no progress in treating cancer they always point to leukemia as the disease in which so much progress has been made. I know that the statistics for AML survival look scary, but that's because most of the people who have AML are elderly and have a harder time with the disease and treatment than young people do, so I totally ignore the statistics. Please feel free to email me about this, or have your sister email me. I've obviously had some experience with this and I'm more than happy to answer any questions or for you all to vent to or anything. Just let me know how I can help.

Sending lots of hope and positivity your way,

~ Mira

MiraT said:

I'm glad your sister will have the internet in the hospital. I think I would have pulled out all my hairs before they fell out if I hadn't had it!

I wasn't put in a medically induced coma, but I can imagine how happy she must be to be off the respirator! I am not planning on a BMT for now, I just had consolidation chemotherapy (which I just finished, so happy!!). I was initially hospitalized for exactly 30 days. They told me to count on being in the hospital 4 to 6 weeks, so I was happy to come out on the short side. Basically, the hospital will keep your sister in there until her neutrophils have returned after chemo. Have you had your lecture about neutropenic precautions yet? I'm sure the terminology is all still new to you, feel free to ask about anything I mention that hasn't been explained to you yet.

The reason I'm not going for a BMT now I didn't have any cytogenetic mutations and neither my brother or my sister were a match, and data shows that for someone my age with normal cytogenetics the risk of relapse from an unrelated donor BMT and consolidation is the same, but there are more risks associated with BMT so we decided to save that as our ace in the pocket, so to speak. Sounds like you guys have definitely decided on a BMT, does your sister have the cytogenetic abnormalities that indicate a high rate of recurrence? It's good that you're consulting with Seattle, they are absolutely the best. I don't know of Dr. Appelbaum, but I have every confidence that all the doctors there are excellent.

It is nice to find someone else of the same age with the same disease! I read somewhere that there are only 200 diagnoses a year of AML under 20 (I was 19 when I was diagnosed) and I can't imagine that there are that many more under 30. We're just really special people I guess!

Some other online resources that you all might be interested in are the Leukemia Lymphoma Society website (lls.org), which also has discussion boards, and Planet Cancer (planetcancer.org) which is specifically for young adults with cancer and has some humor things and a discussion board. Also, since you asked about fertility options before, Fertile Hope (www.fertilehope.org) is an organization that seeks to raise awareness about fertility options after and before treatment.

Feel free to keep asking questions! Hope your sister is feeling well.