The Leukemia & Lymphoma Society - Fighting Blood Cancers
13 Replies Latest reply: Apr 20, 2012 2:28 PM by BriannaMom RSS

Yeah! Maitenance started yesterday!

abslater Registered Users
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It feels so good to move to this phase, I just wanted to announce it to everyone! hahaha! We're finally here - my daughter had her first maintenace appointment yesterday and its' so strange and amazing to say -- see you in a month!! Becky

  • Re: Yeah! Maitenance started yesterday!
    robbieh Registered Users
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    Congratulations!  It is weird to reach this point and very weird to stop going in at least once a week.  Don't be discouraged if there is some fine tuning to get the med levels right.  We are almost to our one year anniversary of starting LTM (4/15) and I can't believe it.  Start counting down those spinals and steroid pulses!!!!  Good luck!    And for us the last year has been "almost" normal; hopefully it will be for you too!

  • Re: Yeah! Maitenance started yesterday!
    BriannaMom Registered Users
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    My daughter is scheduled to start LTM on Thursday.  I don't know if I should laugh or cry.  The last seven months have been a roller coaster of emotions.  I don't know if I know what it will be like to be normal.  Brianna has handled treatment great with minimal issues but I still come to this page everyday to keep myself educated.  The Onc said that we will go to the clinic in two weeks for bloodwork.  Once the fine tuning is done then we will be on the once a month schedule too.

     

    Brianna - dx Aug 2011 pre B ALL

    • Re: Yeah! Maitenance started yesterday!
      abslater Registered Users
      Currently Being Moderated

      Hi - Hanna was Dx in June 2011 ...you really sailed through since we're at almost the same point! That's great! We had several delays during treatment, nothing unusual, but low counts waiting a week, etc ....good luck with your start of LTM. I come here all the time also - I'm trying not to get too obessive though, and will try to get back to my life that I've ignored for so long now -- piles of stuff from hospital stays, laundry that never ends ...hahaha...I think that it may be good to gain some control back in my life ...!! Any who knows, maybe even excercise - hahaha

  • Re: Yeah! Maitenance started yesterday!
    tlblmom Registered Users
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    Yay! It's a really big milestone. It is awfully good news to hear that you have those "frontline" days behind you.

  • Re: Yeah! Maitenance started yesterday!
    Puddintate Registered Users
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    Congratulations!  It's a bit rocky in LTM, but isn't as grueling at frontline treatment.  I wish you smoothing sailing in LTM!!!

  • Re: Yeah! Maitenance started yesterday!
    1970Ghia Registered Users
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    Congrats!! - My son (5 yrs old) started maintenance on April 3rd.  He was DX July 28, 2011.  The medication schedule is a little overwhelming but I'm sure we'll have it down to a science in no time.

     

    Wishing you the best!

    • Re: Yeah! Maitenance started yesterday!
      DanaBrown Registered Users
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      My son started maintance this month. He had a lot of problems with pain after the steroid pulse. Has anyone else had a lot of pain? He has about 2-3 days he takes about 3 lortab and has a lot of problems walking.

      • Re: Yeah! Maitenance started yesterday!
        Jedimom Registered Users
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        Ben (7) just started maintenance and was a mess for 2 days after the steroid pulse. He couldn't walk and he told me it felt like something was eating his insides out. We used tylenol and hot water bottles by day and codeine at night. The onc scheduled him for a dexascan, for osteomylitis (sp) the next time he is accessed.

  • Re: Yeah! Maitenance started yesterday!
    Registered Users
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    Congratulations!!!! I can't tell you how much love and support I'm sending your way. Having been a survivor of cancer myself and then watching a loved one go through it, I though it was almost harder to see a family member experience treatment. When they moved into maintenance, I felt the same kind of overwhelming joy. It's not done yet, so make sure you ace the medication schedule and take especially good care of your son and yourself!

  • Re: Yeah! Maitenance started yesterday!
    balkan123 Registered Users
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    We started LTM in Sep 11 .......We were worried........All the phases had their share of problems............touch wood Maintenance is very easy !!!  Monthly visits are so easy....after almost daily run to hospital...congrats

  • Re: Yeah! Maitenance started yesterday!
    bobsmama Registered Users
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    That's great to hear. Welcome to Maint. will she get her port out? Congratulations!! I totally know how this feels. We will be hitting a year of treatment including frontline and Maint. in July. Hard to believe. Our kiddos are getting there!! :-)

  • Re: Yeah! Maitenance started yesterday!
    BriannaMom Registered Users
    Currently Being Moderated

    We survived the first week with no issues.  Brianna doesn't swallow pills yet so I have to crush everything.  Steroids are given with ice cream and 6MP & MTX is given in chocolate syrup.  This past week my husband and I would wake Brianna up at 10pm to give her 6MP but I can't imagine doing that for the next 1.5 years.  I did the calculation only 78 more weeks, 19 steroid pulses and 6 LP left to go till the end of Maintenance.  Curious - is anyone on study through Maint?  Brianna was in the COG0932 but we pulled her out prior to randomization which occurs at Maint.

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