The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 75. Re: New to the group. Just diagnosed at 32
    jgold Registered Users
    Currently Being Moderated

    Hiram:

     

    Glad things are looking up for you, keep on moving along, brighter days are around the bend.

     

    Jim

  • 76. New to the group. Just diagnosed at 32
    hiram361 Registered Users
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    Well you all might be wondering why I am writing another blog so quickly. I was sent home from Chemo. Apparently this cancer does not want to play nice and decided it does not want to respond to chemo anymore. Treatments cancelled pending doctors appointment with Lymphoma/ Bone Marrow Specialist. I am not happy at all. To be honest the wind was knocked from my sail and I am very scared and sad. I feel like I am traveling down a dark alley not knowing what city I am in. I hope there is a light at the end of the tunnel. I could surely use it.

     

    Hiram

  • 77. Re: New to the group. Just diagnosed at 32
    kgirl Registered Users
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    Good morning Hiram.....and double damn this ugly disease, gives with one hand and takes with the other.  I'm guessing that while you responded to R-CHOP are not doing so well with Rituxin and Trenda, is that right?  That's the hand that takes away, yet you have wonderful, terrific news in the other hand, you have one positive BM match and the possibility of another.  It simply sucks that you have gone through so much only to take a step sideways, but you'll dance the sidestep and then march solidly forward!!!!! 

     

    Always here for you in support-n-prayer.....sending positive vibes via cyberspace to help you refill those sails.

     

    Kgirl

  • 78. Re: New to the group. Just diagnosed at 32
    hiram361 Registered Users
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    Hi Kgirl, I wish R-CHOP and R- TREANDA worked. Both unfortunately showed promise at the begginning but died off at the end. Actually R-TREANDA was still working but not enogh for the Oncologist to let me continue chemo. I think it has to do with saving my stem cell from further damage.So wednesday is my day with the stem cell transplant/ lymphoma specialist. I will try to keep everyone posted. Trying to keep the sails full and the gut hard for another punch. But overall just trying to keep my head up.

     

    HIram

  • 79. Re: New to the group. Just diagnosed at 32
    kgirl Registered Users
    Currently Being Moderated

    Major hugs comin' your way Hiram.....am cyber-spacing one of "them" hard body tummy's one can photo shop just to give you extra, over and above for those dang unwanted punches.  Saving your stem cells is paramount, and please let us know what you find out on Wednesday.  Puffin' air your way as hard as I can darlin'.....your sails will fill, you will become iron man and punch free (please Lord) and am here for you always.

     

      Kgirl

     


     


  • 80. New to the group. Just diagnosed at 32
    hiram361 Registered Users
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    Well I went to my appointment this week. Of course it was recommended that I have an allo transplant instead of a Auto because I am not in remission. I was not ok with this decesion even though they had found a 10/10 unrelated donor. I'm only 32. There has to be other options. So I pleaded my case and apparently there is a new drug which is showing great sign in follicular NHL, but yet has not been approved for it. It is only approved for Multiple Myleloma. Now it is in the hands of the insurance. I hope they approve this expensive drug.

     

    Hiram

  • 81. Re: New to the group. Just diagnosed at 32
    mcee Registered Users
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    Oh Hiram, I sure hope they can work out something.

     

    I noted in the news that the law was changed and now stem cell donors can be paid for donating, whereas the law before interpreted stem cells as organs and by law in the US, they cannot be bought and sold.  But now they are considered blood cells, which can be.  It might mean a better incentive for folk to become donors, since the process no longer needs to be done by boring into bone which is invasive, just blood taking, in a sense, donating blood (I know it isn't that simple, but still....)

     

    It looks rather mercenary, to pay and all that, but then again, if it brings more folk into the donor pool, because they are in a sense reimbursed for time off from work and such.  More donors means better chance statistically for a match I would think.

     

    I just hope the price of the stem cells won't be through the roof.   Tis a step in the right direction methinks.

     

    I am so hopeful they can work out a good plan for you.   Prayers winging your way.

     

    mcee

  • 82. Re: New to the group. Just diagnosed at 32
    kgirl Registered Users
    Currently Being Moderated

    I feel confident that whatever info is "out there and available" on this new drug, Greg will find and forward to you.  It would seem since we have so little personal control over this disease, that whatever is in or coming down the pike that will help in our fight (like Mcee following up on the ultrasound) we should be allowed full advantage and insurance should play no part. As much as we need them the only part they play in healthcare is diving the most expensive route not to mention making decisions they have no business making (a bit of a bee in my bonnet with insurance brokers).

     

    Hiram, I hope and pray you get some good news, you so deserve it.

     

    Blessings always,

     

    Kgirl

  • 83. Re: New to the group. Just diagnosed at 32
    kgirl Registered Users
    Currently Being Moderated

    Hiram.......thinking about you, wonder how you are........when you feel it, please let me know how you're coping.  

     

    Hugs-n-understanding.

     

    Kgirl 

  • 84. Re: New to the group. Just diagnosed at 32
    hiram361 Registered Users
    Currently Being Moderated

    Hi Kgirl,

     

    Sorry for not getting back to you sooner. I am back to work and it graveyard shift. News is that my insurance approved the Revlimid drug. I have gotten some side effects mild rashes and fatigue, but that could be just from working the night shift. The other update is that my Bone Marrow Transplant Coordinator called me and told me they found 3 perfect unrelated donors.

  • 85. Re: New to the group. Just diagnosed at 32
    kgirl Registered Users
    Currently Being Moderated

    No worries, just happy to hear things are moving along in a positive direction.....3 perfect unrelated donors, have you tried your hand at lotto lately????

     

    Take excellent care of you, pop in whenever you feel like chatting.

     

    Hugs,

     

    Kgirl

  • 86. New to the group. Just diagnosed at 32
    hiram361 Registered Users
    Currently Being Moderated

    Hi everyone just checking in. I still alive and kicking. I am now on my fourth cycle of this new drug Revlimid. Will find out in a couple of weeks it is working. I sure hope so.If not I still have the donor matches. But my doctors feels really good about this treatment. Will keep everyone posted.

  • 87. Re: New to the group. Just diagnosed at 32
    FRAN641 Registered Users
    Currently Being Moderated

    Hi Hiram,

    I was glad to see your update.  It sounds like you are in a good place and I sure hope and pray your new drug is doing the trick.  I've not heard of this one and hope it doesn't have unpleasant side effects.  Is this an infusion like the other  chemo drugs?

     

    Take care, fran

  • 88. Re: New to the group. Just diagnosed at 32
    kgirl Registered Users
    Currently Being Moderated

    Hi Hiram......been off to the side a lot lately, lots going on medically (not me this time).  Of course you're alive and kickin' and prayers-a-plenty coming your way that this Revlimid stomps the crap out of this damn disease and slams the door (hard) on the way out.  Please let us know how you're doing, I think of you often.

     

    Hugs and blessings,

     

    Kgirl 

  • 89. Re: New to the group. Just diagnosed at 32
    porciniak Registered Users
    Currently Being Moderated

    Greetings Hiram!

     

    I've not posted a reply to you, have been off the board for some time; however, I've heard about revlimid for some time and wasn't aware  that it was being used in follicular!  That's great news   Hope it's the answer for you, keep it touch.  dj

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