The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 255. Re: Any AML Survivors please post here
    brickandnanook Registered Users
    Currently Being Moderated

    can u send that link again I must of deleted it..

  • 256. Re: Any AML Survivors please post here
    willowbayfarm Registered Users
    Currently Being Moderated

    Hi Nanook,

     

    This link is going to take you to the page where the archived educational programs are located.  Scroll down and you will find Dr. Estey's presentation listed under the AML programs.  You can either listen to the audio version, or download the transcript as a PDF file.  Hope this works for you!  http://www.leukemia-lymphoma.org/all_page?item_id=556138

     

    - WBF

     

  • 257. Re: Any AML Survivors please post here
    texgma Registered Users
    Currently Being Moderated

    I just saw this thread and wanted to post also.  I was diagnosed with AML in June, 2006 (right after I retired, of course).  My husband tells me it's between m1 and m2, 8-21.  I did the consolidation and then 4 chemo sessions, the last one being in the hospital as the first one was.  We thought it was beat - I was in remission for 40 months, and found out it was back right after my father-in-law passed away.  I'm currently 61 years old.  I'm now looking at a haploid stem cell transplant at Baylor in Dallas, using my son's stem cells.  I'm expecting this to be sometime before the end of May - the timeframe keeps getting moved out, but I'm not quite sure why.  I so far have remained in remission from the second consolidation in October, 2009.  I too am experiencing shin pain, groin pain and they hands and fingers are frequently numb at night.  I also have shoulder pain.  But, I was diagnosed with spinal stenosis and a herniated disc, so I think the Dr.'s believe it's related to my back.  I however think it's the leukemia and treatments.

  • 258. Re: Any AML Survivors please post here
    Binnie Registered Users
    Currently Being Moderated

    Any updates Brickandnook and also Soldol. Things have gone quiet and I'm concerned for you both. Hope things are as good as they can be under the circumstances.

    I don't know what else to say.

  • 259. Re: Any AML Survivors please post here
    angelajh Registered Users
    Currently Being Moderated

    Hello, my name is Angela and I am a 22 year survivor of AML. I was diagnosed when I was 15 y.o and I am now 37 y.o. I didn't have a BMT. I went into remission with Chemotherapy and have been cancer free for almost 22 years. I also have a healthy 14 y.o daughter. I'm glad that I found this board. It is nice to see other survivol stories.

  • 260. Re: Any AML Survivors please post here
    gonebeyond Registered Users
    Currently Being Moderated

    Welcome Angela.  It is GREAT to see a 22 year survivor of AML!   I am 12 years out from AML.  I was diagnosed when I was 42.  It's a tough illness.  I hope you are  in good health now. This site can be helpful sometimes.

    Gonebeyond 

  • 261. Re: Any AML Survivors please post here
    angelajh Registered Users
    Currently Being Moderated

    Thank You GoneBeyond,

    Yes, I am healthy now and have been cancer free for 22 years. I'm glad to have found this board.

  • 262. Re: Any AML Survivors please post here
    soldol Registered Users
    Currently Being Moderated

    Hi Belinda,

    believe it or not, to mine and everyone elses amazement I'm still kicking around

     

    Did have a bout of blood poising earlier this week and woke up feeling well, but KNOWING I was really really ill. Took my temperature which was 39 c and knew I had about 40min to get everything ready. I didn't even stop to consider that I was in a first rate hospice with staff that are not only incrediably caring but have far the experize and know how as to what to do. They were a bit shocked after I was finished showering and packing an emeregency bag, after having phoned 2 different hospitals. I had a lung controll that morning which I had to cancel and then got in touch with my hematologist to see what the plan was. I was ordered into bed and the doc came uo just as my doc had called me back. I just handed him the phone and luckily they knew each other (I knew this, but this was his first day on the job) so it was reasuring to hear him say 'hallo darling'

     

    So from the time I woke up until I was whisked away to the er in an anbulance took 50 min. the hospital is only around the corner and my temp was over 41 by the time we got there. I was starting to feel a bit weird, but still didn't feel that bad amazingly enough. They managed to get it under controll pretty quickly and I only had to spend a couple of days there. If  I'm going to be honest, I thought that once I was hospitalized then my number was up. Apparently and luckily enough that wasn't the case

     

    i'm still faling asleep in the middle of conversations and especially sending text messages which i find as boring as anything from before, I'll stop here and keep you updated in the next few days.

    It's down to day to day now, but i'll stick around here if that's ok, until the end. As i'm able to gain so much strength from this forum. So thanks everyone for putting up with me and listening to my boring writing. Certainly  no Hemingway unfortunately

     

    Thanks again Belinda for asking, that truely meant a lot

     

    Love sol xx

  • 263. Re: Any AML Survivors please post here
    Binnie Registered Users
    Currently Being Moderated

    Oh Soldol, You have really made my day knowing you are still doing relatively ok. Your humour, your writing style, your love for life really amazes me. I was just complaining to myself that a job I applied for have turned me down too. But that doesn´t mean anything compared to what you have to face each day. I already have a job, but just fancied a change as my knees hurt working in a shoe shop. We don´t have stools for the customers to rest their feet on, so i spend more time on my knees helping them and they have really become quite painful.

     

    Anyway Soldol, you are another hero in this AML nightmare. You are battling on like a true soldier, I wish I could meet you.

    Do you have a facebook account at all. I would like to show you pictures of me and my family and mum who passed away.

    She is on my mind 24/7 and its still hard being without her.

    I hope we can keep in touch and I will support you all I can on here, keep doing what you are doing, you are doing great.

    Big, big hugs, lots of love and kisses

     

    Belinda

  • 264. Re: Any AML Survivors please post here
    Binnie Registered Users
    Currently Being Moderated

    any news on Brickandnooks husband please anybody?

  • 265. Re: Any AML Survivors please post here
    trvlnfem Registered Users
    Currently Being Moderated

    I am so glad to see your back online and still with us.  I think of you often and was missingb your posts here.  You are so brave and though I often want to stay in denial about the "terminalness" of this illness, I am inspired by you and your courage.  God bless you Cecelia

  • 266. Re: Any AML Survivors please post here
    brickandnanook Registered Users
    Currently Being Moderated

    Hi  thank u for asking we have been going Thu up and downs, here but he is still with us, sleeping allot and now not eating much, last week he had to have platelets, and did I have a fight on my hands with hospice, I swear this hospice up here is "hurry up and die"" maybe we should take u off so we can sign u up again and make more money, is how i feel, needless to say we got the platelets he was 5,000 and they said they couldn't it was quality of life I said is this what you think it is, he can't brush his teeth, sneeze or cough, get up and move for fear. he is cover with bruises and  the lil spots his gums are bleeding and he's peeing blood, they said we are not here to prolong life.. ( no did I just read how solo went to the hospital, and she was able to prolong her life and rightfully so, and thank God) I had to sign something if I take him to the hospital I have to pay, I won the battle this time, as i played the card how will we know if it will

    help him or not if we never tried and our dr called you and ask you if he would be able to get them before he was released, or we would still be in Seattle,

     

    As for him it did help he seems to feel better and wanted to go for a ride, sure the next day he slept all day and night. But he enjoy it, he sits and talks and watched TV and seems to want nothing but string cheese these days, he has no desire wanting to eat anything now. Nothing good for him anyway, which is way off the scope for him, Mr healthy, he has wanted lil company and  remind me I would regret any time i haven't spent with him, when I was washing the dishes, I have been with him24 7, so this surprised me, he doesn't seem to have any deserve to be around people, but yet thinks he can see do this in the yard and he tired and wow down he goes,

    Solo I am so glad u are with us and staying in contact. I wish I could tell you want to expect, I know Gary's appearance has change and it sounds like it is laboring him to talk, and his memory is shot. I read your post trying to understand what he is going thru, How do we know when the time comes, hopefully when he does it will be peaceful and suddenly without warning. Not drug our for days like his dad was,, but it was beautiful for his dad , but how do u down that for your husband.

     

     

  • 267. Re: Any AML Survivors please post here
    soldol Registered Users
    Currently Being Moderated

    Thank you cecelia,

     

    I don't know how brave I am, but I'm taking it a day at the time at the moment. I just pray that I can make it to friday as my niece has her 12th birthday on thursday and when first told that i'd relapsed that was one of my first thoughts, that I wouldn't be able to be here for her birthday. All i want now is 3 days (difinately longer if I can get it of course) but they upped my morphin today which I was grateful for and really needed. But I know that I'm failing fast and thankfully I'm still pretty clear headed but I can feel my body deterianting even though it's giving everything its got and I'm so proud of it this time!!!

    It's so nice to have my sister and brother and their children here and that I can still find the energy to play (quietly) with them. I've had to give up the dancing, but as long as we can still all laugh togeather is all that matters.

     

    If anyone wants to help me out, then cross your fingers and think friday!! I'm a big believer in positive thinking and the more the merrier!

     

    Love sol

  • 268. Re: Any AML Survivors please post here
    willowbayfarm Registered Users
    Currently Being Moderated

    Hi Soldol,

     

    It's very good to hear from you, girlfriend!!!  Just wanted to let you know that my fingers and toes and crossed, and I'm beaming "FRIDAY"  at you as requested, but I'm actually hoping you breeze right past Friday!  Thanks for the update.

     

    - WBF

  • 269. Re: Any AML Survivors please post here
    willowbayfarm Registered Users
    Currently Being Moderated

    Hi Angela,

     

    22 years, that's awesome.  Thanks so much for stopping by to encourage us all, it's wonderful to hear a success story once in awhile!

     

    - WBF

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