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

    Back to the AML discussion . . . and controvert.

     

    Converse?  Discuss, emote, share?  And, sorry Tex, in hitting reply to you.  I didn't know who to reply to . .   I'll go back to my "living with . . ."

     

    cyndi

     

    Message was edited by: rellaann

  • 151. Re: Any AML Survivors please post here
    rellaann Registered Users
    Currently Being Moderated

    Tex,

    What makes you think I was inferring you? 

    Cyndi

  • 152. Re: Any AML Survivors please post here
    pinkydo123 Registered Users
    Currently Being Moderated

    GOD IS LOVE. He did not say I would not go through any storms in life.He promised to be with me in them if I ask with my heart.

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

    I am so sorry I made you feel that way.  The typed words on a page never convey what we are really feeling.

    I guess no matter what I say here you will not be pleased with me.

    I saw others share their story on this site and I thought I would be welcome to do the same.  I was apparently wrong.

     

    I am curious though.  What could I have said that would give you comfort?  That is what I wish to do.

    As far as being focused on Tex.  No.  Not gonna waste any time more time on Tex.  I am way too busy.

    And I do not like being attacked.

     

     

    Gonebeyond

  • 154. Re: Any AML Survivors please post here
    LTaylor Registered Users
    Currently Being Moderated

    My husband has been an AML6 survivor for about 1 1/2 years now.  He did have to have a bone marrow transplant & he may have to have another boost of his sister's cells because his cell's are trying to take over again.  Gonebeyond, I think you are a very strong lady, because within the past year I know what my husband is going thru.  Do you still have leg & joint pain after 12 years?  My husband is experiencing this & the doctors don't seem to tell him what he can do for this?  We are open for any suggestions.

     

    Keep up the faith, Gonebeyond.

     

     

     

    -


    gonebeyond <communityreply@lls.org> wrote:

    Larry Taylor,

     

    A new message was posted in the thread "Any AML Survivors please post here":

     

    http://community.lls.org/message/46142#46142

     

    Author  : gonebeyond

    Profile : http://community.lls.org/people/gonebeyond

     

    Message:

     

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

    My heart goes out to you and your husband.  It is a tough battle.  I am sad to say it will probably be a tough battle for the rest of his life.

    I continue to have leg pain and joint pain in various parts of my body.  My oncologist says I will probably have them for the rest of my life.

    Some times the pain is so bad that I will visit my Dr. and insist He do a cbc just in case.  But luckily my counts have been good for almost 12 years.

    He says I can not expect ever to be completely rid of pain considering what my body has been through.

     

    Describe to me how he describes his pain.  I am curious if it is any thing like mine.  When the AML was active in my body my knees sometimes felt like they were as large as basketballs and throbbed and had sharp pains.  The only thing to eliviate that pain was to be given a pain reliever that put me to sleep.

    And almost every joint and muscle in my body felt this way at one time or another.  While it does get better, when I get stressed it seems to be worse.

     

    My Dr. says avoid stress when possible, but hey..........I have to work for a living so that is almost impossible. 

     

    I look forward to hearing back from you.

    Gail Amason

  • 156. Re: Any AML Survivors please post here
    pinkydo123 Registered Users
    Currently Being Moderated

    Gail thank you for posting you're experience.You're journey and you're story are unique to you.No one can define it.Keep posting because it give's other's hope.

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

    I, too, still have joint pain, mostly in my shoulder.  I alays live with back pain and knee pain, but that is from continuing osteoarthritis.  My shoulder pain is better, but returns alot.  It especially hurts when I sleep on that side. 

     

    Oh, I too, am about 18-24 months out from active AML.  I did not experience aBMT and do not think I would have one if it came to it.....Hopefully will never have to see. 

     

    Blessing to us all, Cecelia

  • 158. Re: Any AML Survivors please post here
    LTaylor Registered Users
    Currently Being Moderated

    Gail,  He has a lot of pain mainly in his shins sometimes they feel like something is stabbing him the leg & goes upward.  The other night he said the pain was about an 8 on a scale from 1 to 10.  His CBC counts come back good but he has been dealing with this pain for a while.

     

    -


    gonebeyond <communityreply@lls.org> wrote:

    Larry Taylor,

     

    A new message was posted in the thread "Any AML Survivors please post here":

     

    http://community.lls.org/message/46150#46150

     

    Author  : gonebeyond

    Profile : http://community.lls.org/people/gonebeyond

     

    Message:

     

  • 159. Re: Any AML Survivors please post here
    Tex Registered Users
    Currently Being Moderated

    rellaann wrote:

     

    What makes you think I was inferring you? 

     

    I didn't.  I thought you were addressing the conversation/potentially emotional verbiage.  My only use of the first-person singular was instating my wishes.

  • 160. Re: Any AML Survivors please post here
    Tex Registered Users
    Currently Being Moderated

    gonebeyond wrote:

     

    And I do not like being attacked.

    I know, sucks don't it?  But when you make attacks, it would make sense to prepare to receive them.

     

    And if you have any idea that you didn't attack, which is typical, go back and read what you wrote to me as if it was written to you. You might be surprised.

     

    But you accused me of calling you a liar.  I asked why.  I believe you at least owe me a quotation where it could even be inferred I called you a liar.

     

    By the way, I didn't attack you, per se, just the ideas you voice.  To that I can only advise paying attention to the wisdom of the old saying, "If you can't stand the heat, stay out of the kitchen."

  • 161. Re: Any AML Survivors please post here
    Tex Registered Users
    Currently Being Moderated

    Pardon me if I'm butting in.  First off, I really do want to encourage you to visit the transplant forum as you'll get a broader range of experience.

     

    Am I correct in understanding the shin pain is bone pain or is it in the skin or muscle?  If it's in the bone, it could be cell production.  Many folks get that when they receive a growth factor for WBC.

     

    You said he has survived a year and a half.  But how long ago was his transplant?  Have the docs examined it for GVHD (assuming it was an allo transplant)?  If it was an auto transplant, I've read that sometimes even those can produce GVH like issues.

     

    I think the first thing to do before you treat is get a diagnosis.  If the oncs can't help you, you might want to try an orthopedic.

     

    And of course, there's always the question of hydration.  I was just at the Hutch last week and virtually every issue I brought up, they said could be influenced by hydration.  I know the cramping I experience frequently is triggered at least in part by simply not drinking enough water in a day.

     

    There's also a consideration about medication issues.  Some drugs affect different people differently and something there could be causing the pain and the best treatment would be to simply remove the med.  Prednisone can mess up anything and everything.

     

    It's a tough call.  You need to push the docs on this.  There's no reason to live with pain if you can avoid it.

     

    Blessings

  • 162. Re: Any AML Survivors please post here
    Tex Registered Users
    Currently Being Moderated

    Cecelia,

     

    Have you had your shoulder looked at?  Had a x-ray or MRI?  It's hard to remember that we can have health issues completely unrelated to our cancer treatment but it's true.

     

    Blessings

  • 163. Re: Any AML Survivors please post here
    LTaylor Registered Users
    Currently Being Moderated

    The shin pain is bone pain. 

    Is the transplant forum a website?  If so, could you send me the website?

     

    -


    Tex <communityreply@lls.org> wrote:

    Larry Taylor,

     

    A new message was posted in the thread "Any AML Survivors please post here":

     

    http://community.lls.org/message/46186#46186

     

    Author  : Tex

    Email   : tex_silver@yahoo.com

    Profile : http://community.lls.org/people/Tex

     

    Message:

     

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

    Yes they did x-ray it while I was in Chemo, as onc said it should not be related to chemo.  However, result were negative for anything but osteoarthritis.  Somehow it just activated while in-patient and has continued since.

     

    I have been sick with cellulitis since Christmas, in bed in Janyuary and Feb. so knees are alot better, but shoulder hurts alot more.  Still on 3 pain pills and my 5th new antibiotic.  Spent one day in ICU because developed allergy to my Blood pressure med.  The good thing about that was discovered my blood (WBC and platelets) were in normal range.  I of course went right to  "I'm out of remission", but no, not the case.  I go in on Friday for my 6 month checkup and all is good, blood wise.  I guess it is natural to go to the remission issue everytime one is sick, but it really had me scared for several weeks.  Glad it is past now.   Hugs everyone Cecelia

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