The Leukemia & Lymphoma Society - Fighting Blood Cancers
19 Replies Latest reply: Jun 23, 2012 12:14 PM by Tex RSS

Signs of Relapse?

chrisdo Registered Users
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my dad just had his 1 year bone marrow exam about 8 weeks ago any everything was clean and clear. No signs of anything.

 

this past week he has started to get very tired and the last 2 days seems to have breathing issues, though only when asleep. Last WBC a week ago was 12.0.

 

He has had a bad eye infection for the last week and a half and has been putting in long days getting seeding finished on the farm. Not sure if this is exhaustion and side affects of eye infection or signs of relapse...

 

Trying to get him to the DR, but he is stubborn....

 

Anyone know of any other symptoms to watch out for concerning relapse??

 

Thanks,

Chris

  • Re: Signs of Relapse?
    DebbieW Registered Users
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    I'm just wondering about the long days, possibly in the sun, which can tire anyone and are probably not best for transplant patients.

     

    Was his hemoglobin level alright last week?

     

    Wishing that he just needs a break and all is OK.

    • Re: Signs of Relapse?
      chrisdo Registered Users
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      He did spend a lot of time in the sun...

       

      Hemo and nuets were all fine, just the WBC at 12 which seems high, even with an infection.

      • Re: Signs of Relapse?
        DebbieW Registered Users
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        I would check with the doctor to see if they are concerned about the WBC, but also about being in the sun and dust. It must be tempting to try and get back to normal ASAP, but the long run is what counts.

         

        Hope it is nothing!

      • Re: Signs of Relapse?
        DebbieW Registered Users
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        Since your Dad is stubborn about the sun, some gift suggestions for the future, there are probably other companies, but we purchased a couple shirts/ and a jacket from Coolibar and a Tilley hat that all have sun protection.

         

        I'm not sure how you get around this, but this probably kicks up more dust than he should be around, maybe a talk from the doc would help.

         

        "...getting seeding finished on the farm."

         

        Wishing your Dad a speedy recovery!

  • Re: Signs of Relapse?
    Tex Registered Users
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    His WBC is high but nowhere near the point where there's cause for worry.  You know, sun is one of the biggest contributors to GVH and at only one year, he's nowhere near out of danger on that.  If your dad wasn't wearing sunscreen and regularly reapplying it, that was not a good idea.

     

    The eye problems could be GVH.  Or dust allergies.  You know we wind up with our donor's allergies, right?  If he's still on immune suppression even being out in the fields is asking for trouble.  Plus, if his alleriges have switched already, that could be what his breathing issues are about.

     

    Were his EOS high?

     

    Blessings

    • Re: Signs of Relapse?
      chrisdo Registered Users
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      Yes he sure is stubborn about the sun...

       

      Not sure what EOS is?

       

      WBC was 15 today, up from 12 a week ago and the neuts went to 10.

       

      All other counts including hemo are normal. Oxegyn was in the high 80s so they have admitted him.

       

      Just got a call as I'm typing this. Looks like pneumonia in both lungs...

       

      Not good... But hopefully not a relapse. Should I be asking them to confirm pneumonia? Isn't this sometimes confused with leukemia?

      • Re: Signs of Relapse?
        Tex Registered Users
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        EOS is the CBC shorthand eosinophils which are the granulocytes that are associated with allergic reactions.  They're usually high when and allergic reaction is going on.  I was wondering if this could be an allergy at work causing some of the WBC to go higher.  But that was before the pneumonia dx.

         

        I've never heard of anyone being misdiagnosed with pneumonia when it's really leukemia.  A person could present with both leukemia and pneumonia but I've never heard of one being confused for the other.  They should confirm the pneumonia simply because they have to know what they're treating as opposed to guessing.  So I don't think you'll need to worry about that.

         

        I do think it could be helpful, depending on his personality, to ask your dad if wants all the hard work he did getting through his disease and recovering from the transplant to go to waste because he won't take care of himself now.  People who fight basic care issues following a transplant often wind up back in the hospital (like your dad) and sometimes wind up dying for no other reason than pure contrariness.

         

        Your dad really needs to take care of himself if he wants to be around for awhile.

         

        Blessings

      • Re: Signs of Relapse?
        KyGuy Registered Users
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        They normally aren't thinking leukemia until the WBC hits 35 I believe.  A WBC of 15 could be caused by the common cold.  Also, to add to Tex's comment on EOS... they could be high if GVH has kicked in.  Again, that could be caused by being in the sun too long.  It's a good idea to have him checked but his work could be the cause of these issues. 

         

        Take care,

        Kelly

      • Re: Signs of Relapse?
        Lottie Registered Users
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        I've never heard of pneumonia being a sign of relapse, it's more of just a risk that comes with being immunosuppressed. Nate takes Bactrim daily to try to prevent it.

        15 sounds high compared to what it normally is, but the high WBC like that generally indicates infection. Nate had a stomach bug back in April that showed not only an increase is WBC, but also showed some immature WBC in his blood stream. Dr. CHen said it's called a "shift to the left." It's when marrow goes into overdrive producing cells (especially neuts) to fight off an illness.

        Make sure your dad takes care of himself. I know my husband isnt very good about it. I remind him (and sometimes have to force him...) to wear sunscreen when he goes outside every single time, and I also have to make sure he takes his meds every morning and night.

        Please let your dad know i'm pulling for him!

        • Re: Signs of Relapse?
          chrisdo Registered Users
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          Thanks everyone.... some good ideas there.. i am going to look into that clothing for him and I think i will ask the DR to have a more frank discussion about taking care of himself.

           

          He had been doing good otherwise and is basically off all his meds other than multi vitamines. Maybe they tapered him off some of the meds too quickly... its only been 14 months since his transplant.

           

          WBC and Neuts rose again this morning slightly... WBC was just over 16 from 15.9 yesterday. Oxygen is still low and he is very weak.

           

          Thanks again for the kind words and information..... will update as i know more.

           

          Chris

          • Re: Signs of Relapse?
            Tex Registered Users
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            Just a word on the shirts.  The ones I got were made by Columbia and the place I've found them most easily, regardless of the brand, is at sporting goods shops.  REI, Bass Pro, GI Joe's, Cabela's, whatever's  in your neighborhood.

             

            I hope he's able to get over this pneumonia STAT.

             

            Blessings

            • Re: Signs of Relapse?
              chrisdo Registered Users
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              Thanks Tex, I just finished building a Cabela's here in town so will talk to the manager and see what we can figure out....

               

              Update: WBC down from 16.5 yesterday to 12.9 today. Neuts down from 11 to 8. They did more chest xrays today but they look the same... although he says the breathing is slightly better.

               

              they put him on another antibiotic last night for bacterial pneumonia which i'm guessing is why the WBC count dropped... although they say they still aren't sure if its bacterial or viral. Still waiting on some blood cultures and nasal swabs. not much else to report. Oxygen still the same...

               

              Chris

              • Re: Signs of Relapse?
                Tex Registered Users
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                Hey, don't forget fungal.  That's really hard to dx.  But it's much more typically bacterial than anything else.  That's good.  So, please, don't worry about it.  It sounds like it's getting ready to start breaking up so whatever it is might be on its last legs.

                 

                I'm glad the WBC went down.  I hope that gives you s greater confidence that it's not a relapse.

                 

                Blessings

                • Re: Signs of Relapse?
                  chrisdo Registered Users
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                  Yes they have been talking about fungal. I think just waiting to see if anything grows on the swabs they've done.

                   

                  WBC was at 8.46 this morning and neuts were at 5.86. Also got the Chimerism results today from 6 weeks ago and they said 100% across the board. Not sure what all they test but appears they are all good.

                   

                  Says he is feel noticeably better this morning so hopefully on the road to getting out of there.... definitely not thinking relapse anymore... thanks to everyone and their input.

                   

                  Take care

                  Chris

                  • Re: Signs of Relapse?
                    Tex Registered Users
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                    Great news, Chris.  Tell him we all hope he continues to improve every day until this crap is gone.

                     

                    Blessings

                  • Re: Signs of Relapse?
                    DebbieW Registered Users
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                    Chris,

                    Sounds like he is on the road to recovery, great news.

                    Deb

                    • Re: Signs of Relapse?
                      chrisdo Registered Users
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                      Update:

                       

                      They did a bronchos-copy yesterday to try determine if what's showing up on the chest x-rays is bacterial, fungal, etc. Results back this morning indicate nothing or either.... rest of results won't be back until tuesday, but they seem to be thinking viral.

                       

                      They took him off the antibiotic and his WBC went up toe 13.9, Neuts at 10.4.

                       

                      Not sure what the next step will be, but seems like more sitting and waiting, not much to treat if it is viral.

                       

                      Chest x-rays this morning still look the same as they did 3 days ago, although he thinks he is breathing better and definitely looks better.

                       

                      Will update when i know more.

                       

                      Take care all

                      Chris

                      • Re: Signs of Relapse?
                        Tex Registered Users
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                        Sometimes the body knows we're healing before it can show up on the tests.  I'm glad he's feeling and looking better and hope it continues.

                         

                        Fungal infections are, apparently, very hard to dx sometimes...maybe all the time.  When I had my fevers during my first induction, they kept testing for fungus and nothing came back.  They kept telling me that didn't mean I didn't have a fungal infection, they just couldn't find it.  Or isolate it.  Or whatever, the bastard was hiding if it was in there.

                         

                        That's a really high NEUT count but I wouldn't think it's anywhere near critical.  He's got an infection and he's fighting it.  They'll be up there until the kamikaze trying to kill of the infection.

                         

                        Blessings

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