The Leukemia & Lymphoma Society - Fighting Blood Cancers
14 Replies Latest reply: May 14, 2012 7:47 AM by marley211 RSS

Maintenance, not so easy! HGB 3.8?

abslater Registered Users
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My daughter just had her 2nd monthly appt yesterday, and her counts were crashed out! Lower than even at diagnosis -- her HGB was 3.8! They gaver her two bags of blood and she's on chemo hold already. She's always been sensitive to 6MP, and they started at 100% - so maybe that's the issue....anyone else crash so soon?

  • Re: Maintenance, not so easy! HGB 3.8?
    Gabbiesmom Registered Users
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    yup!  Gabbie Hbg went down to 4.2  or something close to that in her second month as well. Lowest point ever. She had a transfusion, and was on a hold, and got back on the "train". She's had a few holds in LTM but the last few months she's been good at 100%. Her last appt was last Thursday and her ANC was 1440 and her Hbg 11.6 (highest its ever climbed on its own since diagnosis) I cheered! 

     

    Hang in there!

  • Re: Maintenance, not so easy! HGB 3.8?
    aea309 Registered Users
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    Absolutely. You said it.  LTM is not all it's cracked up to be.  Second month of LTM, Aidan had an ANC of 0 and was on chemo hold for a month! HGB dropped to like 6 or something. Coulda knocked me over with a feather!  It's a lot of chemo from induction to LTM. A lot. And the bone marrow will tire out many times during LTM, and she will have counts that surprise the heck out of you. Just learn to expect the unexpected and ask questions.  Aidan had to crash twice at 100% before they would lower the dosage.  I too suspected that was the culprit, and for Aidan it was.  It may or may not be for you. Keep an eye on it moving forward.  As long as she's feeling OK, you're doing OK. 

     

    Angela

  • Re: Maintenance, not so easy! HGB 3.8?
    AlejandrosMommy Registered Users
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    Alex started maintenance 2/14/2012 and his counts dropped to 6.2 HGB and he needed 2 bags of blood, the DR did not lower his 6mp because he thought it was from the last chemo, we were back in 2 weeks and his counts were good so he kept him at 100% 6mp and has been doing OK,

  • Re: Maintenance, not so easy! HGB 3.8?
    Gabbiesmom Registered Users
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    Also I wanted to add that twice, ear infections have been G's down fall in maintenance. She would start with a cold, her counts would go up a bit, the cold would get worse, the ears would do their thing, and her ANC would bottom out. After the second time, they checked her IgG levels and they were low so she started with IVIg infusions. The process to that was over a 5 month period. She has ear infections 2 weeks ago and got over them BY HERSELF!  Its odd to feel proud of her immune system, but I did!     One day at a time one pill at a time. G just finished a steroid pulse today. 105 of those buggers left to go!

  • Re: Maintenance, not so easy! HGB 3.8?
    abslater Registered Users
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    You guys are the best ...thanks for making me feel like this is another new normal and ok ....thanks so much for sharing ...xoxoxo Becky

  • Re: Maintenance, not so easy! HGB 3.8?
    Elke'smom Registered Users
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    My daughter also crashed 6 weeks into LTM, ended up sick and neutropenic in the hospital.  Had a chemo hold, and then they restarted at 100% (per the protocol), and she crashed one month later.  Pretty sure that was the last time my daughter was on 100% dosages in LTM.  It takes them a while to figure out each child's sensitivity and the correct dosages.  Honestly, it took pretty much all of LTM for my daughter (she went in almost weekly throughout, as they adjusted dosages).  But still, LTM was SO much better than front-line treatment!

  • Re: Maintenance, not so easy! HGB 3.8?
    norrim04 Registered Users
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    After Joey started LTM, he was hospitalized for the first time since DX with neutropenic fever. We had to have weekly cbc's for months b/c his counts were all over the place. I remember starting a thread once to the effect of "Would you want to knw what you know now" about the hassles and headaches of LTM. I think it is often painted as such a perfect pearl, and for us it just wasn't. 6mp adjustment was just about a constant thing for us.

    • Re: Maintenance, not so easy! HGB 3.8?
      abslater Registered Users
      Currently Being Moderated

      Its so depressing, I really thought that getting to LTM we'd have some of our normal life back ....I know we just started LTM, but so far, so crappy ...thanks to everyone for their replies ...

      • Re: Maintenance, not so easy! HGB 3.8?
        Gabbiesmom Registered Users
        Currently Being Moderated

        For Gabbie it did get better, but it took time! About 6 months. And its not perfect, just better. She's a year into maintenence and goes about participating in things and ging about things pretty normally. But she still tires easily and has aches and pains yet. Lately she's been telling me her skin hurts and that it hurts for people to touch her    And has an almost constant cold. I said just today to my MIL who asked me what to say when people ask how she's doing, and I say that, for a child undergoing cancer treatment, she's doing well. Its definately better then FL treatment, but a long ways from perfect.

      • Re: Maintenance, not so easy! HGB 3.8?
        norrim04 Registered Users
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        I'm sorry, I didn't mean to be a bummer. It is way better than frontline, please just don't be discouraged if it's not a perfect pearl. It's part of the process.

  • Re: Maintenance, not so easy! HGB 3.8?
    bobsmama Registered Users
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    I think I was told Maintenance was supposed to be so much better. And it was / is so far (knock on wood). Bob's counts were a bit wacky too, Onc says his body just trying to make the adjustments after all that chemo in Induction. No chemo holds or transfusions so far. My heart goes out to you guys! Hang in there... I hope things get better as you move further along. Hugs!

  • Re: Maintenance, not so easy! HGB 3.8?
    tlblmom Registered Users
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    Hi,

    "Early" maintenance (say, the first three months) were crummy for us, with transfusions, neutropenia, chemo holds etc. BUT my son also had his hair  grow back and looked a lot less like "Uncle Fester" than he did on treatment. Emotionally, he was psyched and back at school for at least 50% of the time - a big deal. Pretty quickly, he looked normal enough that people didn't immediately assume that there was something "wrong" with him as soon as they saw him. That is HUGE. Now we're about 8 months in to LTM and it's getting better. It is still harder than I thought it would be, but it's so so so much better than frontline. He's better enough that I have to chew him out when he skips out on his homework . I still HATE steroid pulses and some are better than others, but we are starting to count down. We hope for OT 4/2013 so 12 more pulses to go! - T-LBL boys don't stay in LTM as long as B-ALL boys.

  • Re: Maintenance, not so easy! HGB 3.8?
    MomofNicholas Registered Users
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    I agree with Margaret, don't be discouraged!  You know now that she's sensitive to the chemo.  Hopefully things'll even out in a couple months and they'll find a nice dose for her.  Everyone hits bumps.  Our didn't occur until 6 months in, but after a bumpy 6 weeks, things are calm again.  ~Theresa

  • Re: Maintenance, not so easy! HGB 3.8?
    marley211 Registered Users
    Currently Being Moderated

    The first few months of LTM were rocky when it came to counts for Summer. There was a lot of neutropenia and chemo holds and reductions. She never needed transfusions, but her counts weren't great. We were then in a really consistent place where her ANC was literally 1,300 every month for about 4 months or so. Everything was going great and she seemed 100%. Then this past month, she has had leg pain, tiredness, hair loss, a low grade fever for a day, puking in the middle of the night, a urinary tract infection, lack of appetite...and her ANC was 700. It is like a rollercoaster! You think everything is going smoothly, and BAM weird stuff starts happening again!!!!!!  I hope your daughter's counts stabilize and they get the dosage managed!!!! Hang in there!

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