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21 Replies Latest reply: May 11, 2012 12:41 PM by Tex RSS

Need help son day +36 questions

nana Registered Users
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Ok I'm sorry this might get quite long.  My son, 14yrs, is at day +36 for relapsed ALL with double umbilical cord.  He has no count recovery and isn't holding transfusions.  The doctors are saying this could be

1. failure to engraft --but he had a rash/fever they attributed to engraftment syndrome about day  +10 treated with steroids 2 weeks and resolved   he has also had his leukocyte count up to .35 with 100 neuts showing and held for 4 days only to crash again

 

2. myleo something syndrome--(sorry cannot remember the exact name) when cells in marrow start attacking others thus not letting anything good out   but that is treated with steroids and he was just on them so ???

 

3. leukemia is filling his marrow and no room for good stuff

 

I guess my question is  Does any of this sound reasonable to you?  The doctors are saying Monday a BMB will be done but if the marrow remains empty they might not be able to tell anything.  Any other tests you would ask for?  And if worse case its leukemia any of you know about possible treatment when there is no marrow to recover with.

 

Thanks,

Nana

  • Re: Need help son day +36 questions
    mamawarrior Registered Users
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    Nana, my son was 20 when transplanted with a double cord for relapsed aml. He had fever/rash about day 12 also. At one point his wbc went to .4 just to bottom out for a couple of weeks. He finally engrafed on day 37, they had planned on a BMB on day 42 if he did not engraft. He also required multiple transfusions at one point he was getting platelets every 8 hours around the clock.

     

    He was on a pediatric transplant unit. There were 2 other children that were transplanted about the same time as my son but with single cords, they were only 5 years old. Both of those children had to have bmb's at day 42 and both engrafted around day 50 range. One was ALL one was AML. Both of those childrens BMB's did show signs of engraftment at day 42, i don't recall the % seems like both were around 50%. One engrafed fully thereafter, the other never fully engrafted but is leukemia free at 5 years post transplant. One of these children had a virus surface post transplant that may have slowed engraftment.

     

    How is your sons cmv status, has he had any dormant viruses surface post transplant??

     

    I understand the anxiety of waiting. Hoping your son starts to engraft real soon but from my experience it can be slow with u cord and it was common practice at our facility to check the bmb at day 42 if they did not.

     

     

     

     

    • Re: Need help son day +36 questions
      nana Registered Users
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      Thanks MW, hearing other slow successes helps with the anxiety.   Drs have never spoken of CMV.  What is it?   I don't know what you mean by dormant viruses either-sorry.  He is on 3 anti-biotics right now, 2 from an earlier infection and 1 because Jakob has been having fever spikes for the last week or so.

      Doctor this morning spoke of another value they check IVR or IRF something like that (sorry but my mind is full of numbers and stats and I din't have my book to write down acronym) he said it is a good indicator of engraftment and it is not moving

  • Re: Need help son day +36 questions
    Tex Registered Users
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    I'm figuring they're talking about myelodysplastic syndrome (MDS).  You know, I had it but I never had too much explained to me about it because I was already into AML by the time they found it.  MDS is dysplasia in the marrow, in case that means anything to you.

     

    Beyond the fact that it's so soon after the transplant, MDS is often a precursor to AML.  Since your son had ALL, it just doesn't sound like it fits,  Of course, AML and ALL can even exist side-by-side but that sounds, to me...an uneducated bumpkin, like it's not very feasible.

     

    Now, grafts can start, even make it quite well into the process and, then, fail.  So that's not so outlandish to me as the MDS.  On the other hand, it doesn't sound very feasible that his marrow is already clogged with bad cells.  If so, something really went wrong.

     

    I think the BMB is all they'll need, at least to start.  It kind of depends on what tests they order from the aspirate.  I figure they'll order a Flow, chimera test and check him for residual disease.  Beyond that, they'll look at his cellularity (which won't mean a lot at this point), check for blasts and dysplasia.

     

    You might ask what they're planning on looking at and, if they're not looking at one or more of these things, you might ask them why not.

     

    I hope this turns out to be slow response.  Please let us know what they find out.

     

    Blessings

    • Re: Need help son day +36 questions
      nana Registered Users
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      Thanks Tex,

       

      Your reasonning is the same as mine.  I will make sure to ask exactly what they are looking at on Monday.  We have been having difficulty with getting these doctors to communicate so if I don't ask very specific questions they just blow me off.

       

      I will let you know results

       

      Nana

      • Re: Need help son day +36 questions
        mamawarrior Registered Users
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        The IRF is a subset of the retic count (immature reticulocyte fraction) and from what i understant shows how well the marrow is functioning to produce red blood cells. Unfortunately i don't remember what my sons retic counts were prior to engraftment or around engraftment time.It is my understanding that a rising IRF is an early sign or hematalogical recovery of the bone marrow. When exactly this rise occurs prior to engraftment, i have no idea, but would be a good question to ask the doctor. But all in all, i would venture to guess the bonemarrow biopsy will be the best tool for answers.

         

        Most folks have dormant viruses in their bodies kept in check by their immune systems but unfortunately post transplant,  patients are severely immunosuppressed allowing the viruses to resurface. CMV (cytomegalovirus) seems to be a common one post transplant and most transplant folks have to deal with it at one time or another. Sometimes when viruses resurface prior to engraftment, they can hinder the engraftment process, or if they have to be treated with antivirals, certain antivirals can suppress the bonemarrow. Transplant centers monitor the cmv closely, usually on a weekly basis, we were actually told to expect that it would surface.... and it did. I don't know if your son had been exposed at sometime in his life to cmv, i am sure your docs tested him for that prior to transplant.

         

        Crossing my fingers for your sons bonemarrow to kick in and get moving. Please let us know what transpires.

      • Re: Need help son day +36 questions
        Tex Registered Users
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        One thing I failed to mention is that my counts were very slow to recover after my first induction.  I think it was because they killed off the AML but couldn't fix the dysplasia.  If they persist with the MDS thinking, I'd want them to review his original records and draws to see if they missed something.

         

        If his doctors just blow you off, is there a possibility to change doctors?  That is not what they're supposed to be doing.  Some docs think that it's okay to leave the patient education to someone else, though those docs rarely, help the patient find a source for education.  But, if you're working for me, you're going to make sure I understand what you're talking about or you're going to be fired.  We hire our docs, their continued employment with me depends on more than taking my temp, poking at my innards and telling me what's going to happen next.

         

        If you can't switch at this point, get like a terrier and sink your teeth into them until they give you a satisfactory answer.  Don't accept being blown off. 

         

        Blessings

  • Re: Need help son day +36 questions
    alexno Registered Users
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    Hi nana,

     

    Sorry to hear about all this trouble but it sounds a bit like what my son (AML, age 3.5, single umbilical cord) went through in February. At that time we were around Day +35-40, fighting fungal lung infection and quite bad rhinovirus/croup. He had engrafted at Day + 18 (though still needing the support of transfusions as it takes a bit for the cord to come into its own). Then around Day 35 his counts started dropping and they got worried about the possibility of graft failure and something called Post Transplant Lymphoproliferative Disorder or PTLD. The docs said the low counts were likely due to the virus(es) my son had but wanted to rule everything out.

     

    Thankfully, the counts started to recover on their own. The plan if they did not was to 1. Do a bone marrow biopsy and 2. Do a rescue transplant using either my husbands' or my own stem cells (a haplo transplant, very risky).

     

    It was a long road for us, we were inpatient post-transplant for 95 days due to various infections, but are home now...I hope that your son's counts pick up soon!

  • Re: Need help son day +36 questions
    nana Registered Users
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    Thank you all for your ideas.  I have my list of questions ready.  Tex, we are at a different hospital for transplant and the adjustment to the new medical team has been rough.  My son was originally Dx in 2008 and we have an excellent relationship with that team.  Since getting to the transplant hospital we have had 4 meetings with them about the lack of communication, it all came to a head about a week ago and things have been getting better.  I have already told them that if I had my choice we would have left.  It is not that I don't think they are good doctors--it really is a situation of I want every little piece of information and they think that coming in once a day to say "Ok keep waiting"   So if I can get very specific questions , they have no choice but to answer them. 

    • Re: Need help son day +36 questions
      Tex Registered Users
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      If that's what you need, that's what you need.  I don't know if you're talking about medical information or procedure/test scheduling or something else.  But they owe you as much information as they have.

       

      Now, sometimes a doc will be doing something else when s/he gets some information and schedules a procedure.  In those cases things will come as a surprise to the patient.  I was surprised by a couple of things.  Still, the tech, nurse, whoever could usually tell me what they were checking out.

       

      On the other hand, "OK, keep waiting," might be good enough for some days.  There's not always new information to share.

       

      It's s trying time.  See if taking a couple of deep breaths helps sometimes.

       

      Blessings

  • Re: Need help son day +36 questions
    nana Registered Users
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    We are waiting for chimerism, they said Friday we should have those results.  Slides from aspirate don't look very good, no surprise there we knew no counts means unhealthy marrow.  Because the marrow was so empty they could not identify MAS (that's the syndrome I couldn't remember).  Today we have a full body CT to look for infection because fevers/shakes and then we switch up anti-biotics and anti-fungals. 

    Doctor is hopeful but is talking about another transplant.  Now I have been looking into treatment for relapse after transplant but I am getting confused by the language. I think my brain is on overload

    Does anyone have a simple to understand explaination of haplo?  I don't get the mis-matched match haplo-identical whatever.  I think it means not a total match in HLA but partial parental match meaning he would have half of say my stuff.  Does that sound right?

    • Re: Need help son day +36 questions
      Tex Registered Users
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      That's pretty close.  I only have a rudimentary understanding of haplo but the first one I knew of the son actually donated to the father.  That guy had a lot of GVH issues early on but went back to work and, at last report, was doing pretty good.

       

      But yes, the haplo uses half matches from a family member.  So far I've only heard of it being done with a parent or child.  I guess they're be going for a more standard kind of match (X/10) with siblings.  They've done a lot to improve the process, by the way, and fewer people are reporting the kind of issues the earlier guy had.

       

      It does seem they're getting the whole haplo thing pretty well figured out.  So, you've got that going for you.

       

      Blessings

    • Re: Need help son day +36 questions
      nana Registered Users
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      Sorry it has taken awhile to update.  The lab had some issues and they had to retest chimerism.  Good news came back today Jakob is 96% donor and his counts have taken off. 

      Thanks for the help.  Fingers crossed that we can move forward and get home soon.

      • Re: Need help son day +36 questions
        alexno Registered Users
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        Really glad to hear the good news! I don/t know if it was coincidence or not, but my son/s first chimerism was only at 70%. He started to get better once they took him off the cyclosporine and his chimerism came up to 100% donor cells!

         

        Hope you are doing well and no trouble with infections etc.

        • Re: Need help son day +36 questions
          nana Registered Users
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          We got MRD back and are still positive so we are tapering off steroids and then next week cyclosporine.  Hoping that will get Jakob to 100% and get rid of those pesky left over leukemia cells.

          • Re: Need help son day +36 questions
            Tex Registered Users
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            Just a speed bump.  We all hit those along the road.

             

            Hang in there.

             

            Blessings

          • Re: Need help son day +36 questions
            nana Registered Users
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            Well good news we are getting transferred to our local hospital on Monday.  Jakob still gets platelets every day and his counts are lagging so the doctors still want us inpatient.  We are very excited to go "home".

            • Re: Need help son day +36 questions
              Tex Registered Users
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              I can't remember anyone getting transferred before.  Hope all goes smoothly.  Please keep us updated.

               

              Blessings

              • Re: Need help son day +36 questions
                nana Registered Users
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                We made it to "home" hospital Monday.  We are settling in and it is so nice to be in a familiar place.  Sucks still being inpatient and isolated but way better.  

                 

                Tex, the reason the transplant team transferred us is pity really, just get us with our other 2 kids and Jakob closer to friends. Jakob is feeling good with no infections or complications but we are still not seeing any strong counts.  He is at day +62 and still needs daily platelets and hemoglobin every 2 days.  His neutrophils are now hovering around .5 with slight ups and downs.  Transplant team is thinking we will need to pull the plug on this and re-transplant because his marrow just isn't recovering.  They did a second BMB and we are waiting for those chimerism results. Jakob is scheduled for another check in about 2wks and I am thinking if his marrow grade has not improved by then transplant team will want us back to start again.  2 new cord matches were found and are on hold.

                • Re: Need help son day +36 questions
                  KyGuy Registered Users
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                  I'm sorry that he may need a second transplant.  I'm sure it's good to be home and closer to his/your support systems.  Hang in there and keep us posted.

                   

                  Take care,

                  Kelly

                • Re: Need help son day +36 questions
                  Tex Registered Users
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                  It's got to be great to know the backup plan is already in place.  I understand pity, it got me outta the hospital before I was actually out of neutropenic danger because I had been in the joint for seven weeks and Christmas was a week away.  After not delivering on her promise to have me home by Thanksgiving, I think she figured I was a risk.  I was about to get on top of the hospital and do something drastic.

                   

                  At least my doc was diplomatic enough to call her pity a "mental health discharge.":  It's still strange but if it helps Jakob feel better and the local hospital is able to take care of any of the weird little crashes we can have, it's probably a great idea.

                   

                  I hope the chimerism comes out stronger than expected.  Please keep us informed.

                   

                  Blessings

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