AML ?'s

therese04
therese04 Member Posts: 4
edited March 2014 in Leukemia #1
My 24-year-old sister was diagnosed Monday 12/27 with AML with WBC of 420,000. Needless to say, the docs are amazed she made it to the end of the week. What are some encouraging things we can say at this point? She is such an upbeat person, but now she is convinced she will die in short order....we haven't walked in her shoes so we don't say much. What about infertility since she has already undergone the majority of her initial induction phase chemo so it would be too late for drugs to chemically suspend her ovaries during chemo I would think. Her doc had to leave town and will not be back for a bit so we are not asking too many ?'s at this point. Also, does anyone have good info on the best BMT hospital to go to? We are discerning between Mayo and Seattle presently. Thak you, there are just so many ?'s!

Comments

  • MiraT
    MiraT Member Posts: 15
    #2
    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
  • therese04
    therese04 Member Posts: 4
    #3
    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

    Thank you, thank you. When she gets her lap top going in the hospital I am just going to turn this discussion over to her so she can ask ?'s. At that point she may contact you. When she was initially admitted they put her in a medically induced coma. Did you have to do that? She is acting so strange after having been off her respirator for the last two days. No inhibitions whatsoever ~:o) It is actually hilarious, the things she says. Are you planning on a BMT? How long were you initially hospitalized for? I am sorry for so many ?'s, like you said, most AML patients we have talked to have been older. There are 7 siblings in our family and we are all being typed Monday for which of us may be a match for her, they seem fairly confident in Seattle that there will be a family member that is a match. We have not obtained a second opinion in the matter because of the severity of her condition when she was admitted. Our doc is consulting with Dr. Appelbaum apparently in Seattle. Do you know anything of him? I just can't wait to tell her tomorrow that there is truly someone out there in her age range with this!
  • MiraT
    MiraT Member Posts: 15
    #4
    therese04 said:

    Thank you, thank you. When she gets her lap top going in the hospital I am just going to turn this discussion over to her so she can ask ?'s. At that point she may contact you. When she was initially admitted they put her in a medically induced coma. Did you have to do that? She is acting so strange after having been off her respirator for the last two days. No inhibitions whatsoever ~:o) It is actually hilarious, the things she says. Are you planning on a BMT? How long were you initially hospitalized for? I am sorry for so many ?'s, like you said, most AML patients we have talked to have been older. There are 7 siblings in our family and we are all being typed Monday for which of us may be a match for her, they seem fairly confident in Seattle that there will be a family member that is a match. We have not obtained a second opinion in the matter because of the severity of her condition when she was admitted. Our doc is consulting with Dr. Appelbaum apparently in Seattle. Do you know anything of him? I just can't wait to tell her tomorrow that there is truly someone out there in her age range with this!

    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.
  • therese04
    therese04 Member Posts: 4
    #5
    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.

    Hi Again,
    I tried to e-mail you, but something must have happened! My sister is coming home tonight, yeah! Her subtype is M2, do you know anything of this. There are so many facts on the net that we cannot understand, ie. prognosis etc. She has decided to not undergo BMT at this time. Our mother would like to get her hooked up with some people in somewhat the same age group to e-mail/chat with. Is that a possibility? BTW she never did get her laptop up and connected in the hospital, just for watching DVD's! LIke you said previously most people with AML are a bit older. So if there is anyone younger out there that would be willing to e-mail her, her e-mail is honeyb6@catholic.org
    I hope you are doing well, Mira. When did your hair begin to grow back....was it during consolidation, or is it after?
  • almostsister
    almostsister Member Posts: 2
    #6
    therese04 said:

    Hi Again,
    I tried to e-mail you, but something must have happened! My sister is coming home tonight, yeah! Her subtype is M2, do you know anything of this. There are so many facts on the net that we cannot understand, ie. prognosis etc. She has decided to not undergo BMT at this time. Our mother would like to get her hooked up with some people in somewhat the same age group to e-mail/chat with. Is that a possibility? BTW she never did get her laptop up and connected in the hospital, just for watching DVD's! LIke you said previously most people with AML are a bit older. So if there is anyone younger out there that would be willing to e-mail her, her e-mail is honeyb6@catholic.org
    I hope you are doing well, Mira. When did your hair begin to grow back....was it during consolidation, or is it after?

    Hi, I am so glad to hear that your sister will is home. I would like to ask you about the respirator and the medically induced come. My "almost sister" who is only 23 was diagnoses about a week ago, and she's been on the respirator for 5 days. The doctors are saying she will be on it "for awhile", it's best for her body to rest. It's so hard to see her like that, and I am scared about the whole thing. Someone told her that the chance of coming off the respirator are about 5%, but I jus trefuse to believe that. I am just looking for some reassurance on everything. Please, share some more information with me:)
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #7
    Hallo,
    It is more than 8 weeks time since your posting. However i chanced to see this today only. Dear friend, may i know what is the current helth situation of your sister? Please read posting i made a few minutes ago and reply me.
    Wishing the best of all for your sister.
    Vaidyan
  • Unknown
    Unknown
    #8
    This comment has been removed by the Moderator

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