The Leukemia & Lymphoma Society - Fighting Blood Cancers
33 Replies Latest reply: Nov 24, 2012 10:02 PM by KyGuy RSS

Three weeks after transplant... waiting for him to come home...

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http://community.lls.org/thread/11252

 

Started the post with a link to our story... Willowbayfarm suggested that I should start a new thread here and it does make a lot of sense.

As the transplant seems to be rare in the CML world, posting my brother in law's experience here might be helpful to everyone who's looking for a similar case, but does not necessarily follows the discussions on CML side. My brother got to the hospital at the point when the CML could not be kept under control with medicine only. Shortly after the diagnostic, we almost lost him due to a horrible stroke he probably experienced just before the diagnostic, but nobody seemed to know. Nobody (including the doctors) believed at that time that he is going to make it. It was God who helped him and us go through this ordeal without loosing hope... and even though I said it before, it's frightening when one realizes God's greatness... at least it was to me.

 

The only option was the transplant and he went through it just 3 weeks ago... now, his wonderful kids and my beautiful sister are waiting for him to come back home, just in time to celebrate his son's first birthday.

We were lucky enough to have his brother as a very good match, so the transplant went fairly well with no major side effects, except for the fever that was literally driving everyone crazy as the doctors never seemed to know what's causing it. Here on this board, friends who never looked into my eyes, but they really read my heart (I would like to thank everyone who supported us with info, prayers and good thoughts) were able to send me message after message, trying to calm our fears of unknown...

The fever went on and on for days after transplant, during the whole period of aplasia, up to the point where he almost gave up... he said to my sister he could not handle it any more. The other side effects he experienced were not unbearable... painful pharynx, diarrhea, skin rush on his tights and depression. Everything went away when the engraftment took place.

 

Ten days after the transplant the new cells took over and started populating his blood...he still received 3-4 blood transfusion due to the low level of his platelets....  last tests that I know of, performed 3-4 days ago, showed a WBC of 3.500, normal level of platelets and red blood cells. The only reason he is still in the hospital is because he again experienced diarrhea and the doctors want to make sure that everything is fine before they release him. Besides that, I know he had a bone marrow test these days, but I don't know the result yet... The blast was a little over 30% by the time of transplant... I know the result will be good! It must be good!

 

I don't know what's next, but I just have a good feeling about it... I know it might not be over yet, I know that it takes time to figure it out if a transplant really worked, or at least that's what I read, but he feels good know. We, as a family, used to tell each other that we felt it's a nightmare and we waited to wake up. I think we did! We did wake up to see the sun again, to enjoy our family and to thank God every minute for this miracle that's called life.

 

GOD BLESS YOU!

 

Olimpia

  • Re: Three weeks after transplant... waiting for him to come home...
    Tex Registered Users
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    "Next" is probably just getting him through the phases of recovery that typically follow us over the months and/or years following a transplant.  Infection, GVH, electrolyte and mineral imbalances, etc.  They happen and they typically won't be much to worry about.  It sounds as if he's doing very good...the diarrhea might be a bit of GVH starting up or simply an infection.

     

    Please keep us posted.

     

    Blessings

  • Re: Three weeks after transplant... waiting for him to come home...
    willowbayfarm Registered Users
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    I'm glad to hear things are getting better and he's looking at getting to go home soon.  That will be a surreal experience after all the time he's spent in the hospital!  The engraftment is very good news indeed.  I hope from this point on it will be smooth sailing for him, although as Tex alluded to in his post, there are often bumps in the road to recovery.  I hope any bumps encountered turn out to be minor and easily resolved.

     

    Thanks for the update, and I hope he does indeed make it home soon.

     

    - WBF

  • Re: Three weeks after transplant... waiting for him to come home...
    jolyb Registered Users
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    Sounds like things are going "as expected" in this process.  My son-in-law underwent his sct 10/11/11 and has had some some ups and downs, but is doing well, too. Everyone on this site is great, giving their support and insight into something so new to go through.   I am not at the point in all of this that I can offer any advice, and still have posts to make from time to time looking for insight from those that have been there already.   I wish God's Blesssings on your brother-in-law and his family.  

  • Re: Three weeks after transplant... waiting for him to come home...
    PinkHat Registered Users
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    Hi everyone and God Bless You!

     

    He is home for 2 weeks now, everything seems to go well. Poor guy tells me that he enjoys eating like never before. He lost a lot of weight before and after the transplant and now, that he is home, is enjoying himself and the family. My brother in law is an excellent cook and even so, he always tells me that he does not exaggerate with food. He needs to gain wait but not all at once All the side effects he experienced after the transplant are gone now. The only noticeable thing is the fact that sometimes he gets confused between different words in the sense that he does not remember them or uses the wrong word to define something, but he corrects himself most of the time and almost immediately. This is obviously because of that horrible stroke he had, but it is only family that can notice something is different than before. I know it takes a year or more to fully recover after the stroke he had (at least that's what the neurologist said), but he is doing very well after 6 months.

     

    During the first week home, he had to go back to the hospital for check up three times. This week he only went twice. As we talk almost every day, my sister tells me that he is doing well and I can tell that's the truth. Still,  I have became so frustrated lately with the fact that I don't know details about the blood and bone marrow tests that were performed the last two weeks. When he was in the hospital, I knew a bit of info about all these things. The doctors over there don't seem to give the patient all the details as long as they are o.k. with the results.

    That's all I have for now, we thank  God every day for his recovery and I will keep praying for everyone here.

     

    Thank you and God Bless You!

     

    Olimpia

    • Re: Three weeks after transplant... waiting for him to come home...
      Tex Registered Users
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      I think some docs tend to start with the "lite" report and leave it to the patient to push the discussion further if they want more information.  Not everyone wants the details.

       

      The memory issues could certainly be the result of the stroke, no doubt.  The type of situation you described could just as easily be from chemo brain, however, and unrelated to the stroke.  Of course with two issues possible, it might be a combination of both. 

       

      I'm glad he's doing well.  I hope his recovery continues to be relatively smooth.

       

      Blessings

      • Re: Three weeks after transplant... waiting for him to come home...
        PinkHat Registered Users
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        Hi again!

         

        I got my sister into a short "private conversation" while my brother in law was sleeping and asked her about the last blood tests results, as I wanted to know more then the O.K. that we heard from the doctors.

        I asked her to read me from the medical notes they got last time and I wrote down a few things, hopefully they will make more sense to you than they make to me:

         

        WBC is 5.52% which I think is very good.

        His Basofile count was 0.2% (I asked about this because I recall Trey specifically asked me about it one time, so they have to tell something)

        Hemoglobin: 12% (g/dL) this one is a little low as far as I know, but he should be close to normal.

        I forgot to ask about platelets, they were extremely low all the time, I don't know now... I will ask next time.

         

        I also inquired about the PCR because I wanted to ask you what you think. Here's what I got, maybe not entirely medically correct in terms of how it's supposed to be written, but let's give it a try

        1A PCR - negative

        nested PCR - positive

        PCR ABL - 0.012%

         

        Please let me know if there is something in particular that I should ask, so you can figure out better how he is doing. The doctors are telling him and my sister that he is doing fine and I can tell he is doing well, but wanted to let you know about how he is doing in terms that would make more sense to you than a simple "o.k" or "well". I just don't know how to "translate" all these. And me and my sister would like to know, too. As she is with the kids most of the time, she just never had the opportunity to have a private discussion with his doctor.

         

        Thank you and God Bless You All!

         

        Olimpia

        • Re: Three weeks after transplant... waiting for him to come home...
          Tex Registered Users
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          Hi,

           

          The blood counts we tend to focus on are WBC, HGB (or HCT), ANC (or "Neut") and PLT.  The rest are just kind of mucking around in details.

           

          The WBC is very good and his HGB is, indeed, a couple of points low but it's in great position this soon after a transplant.  Nothing to worry about there.

           

          The basophils are just part of a group of cells called granulocytes which includes the neutrophils (ANC/Neut).  They really don't matter as you're looking for the neutrophil counts.  The other granulocytes matter to the overall health and regulation of the immune system but they're not really relevant counts for AML assessment.  At least no doctor has ever mentioned those counts to me.

           

          You might benefit from some booklets from the LLS on everything that is being piled on you.  Follow this link and you'll find all kinds of information which explain the various diseases, treatments and help you understand the blood counts and what they mean.

           

          Hope this helps.

           

          Blessings

  • Re: Three weeks after transplant... waiting for him to come home...
    PinkHat Registered Users
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    Hi everybody!

     

    Just some news about the progress as almost four months passed since the transplant took place.... some signs of GVHD maybe?!

     

    Everything seems to be fine except for the liver. The last tests showed his triglyceride level extremely high, up to the point where the doctor believed that he is drinking alcohol, which is not the case.

    I am not sure the levels are measured the same in Italy and here, but just to give you an idea, the normal values listed on his medical papers are between 19 and 50, and last time the tests showed a level of over 2000. The test itself has a name, I just don't remember how it's called (I guess pregnancy makes you forget things

     

    Another issue that he deals with is the numbness of his left foot. If you remember in the beginning, right after the stroke,  the semi-paralysis affected his right side of the body. Now, he cannot feel his left foot and, of course, he does not have full control of it. He basically cannot drive... you know how the cars in Europe are; they have one more pedal besides the gas and the brake... you have to use your left foot as well when driving.

     

    He complains sometimes of headaches, but they don't seem to be anything serious. I am planning to ask about the list of pills that he is taking at the moment, maybe that will give you a better idea of where he is right now. Lately, I stopped asking specific questions because I wanted them to start feeling that their life came back to normal and I did not insist on details as I did in the past, details that would remind them every minute of the ordeal that they had to go through.

     

    That's all I have for now... everything seems to be o.k. except for this liver problem that gives us nightmares.

    God Bless Everyone!

     

    Olimpia

    • Re: Three weeks after transplant... waiting for him to come home...
      Tex Registered Users
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      Lots of folks have issues with their liver enzymes after a transplant.  I've never heard of anyone using triglycerides to pronounce liver issues so that's a new one for me.  Typically, they look at those to analyze the state of cholesterol and such. 

       

      They tend to look at the liver enzyme readings themselves to determine the state of the liver.  Those are ALT, AST, phosphates (sometimes listed as AKT or something like that) and bilirubin.  Before I worried about liver issues, I'd want to know what those are.  Of course, I'm not a doctor and I'm sure there's something to the lipids readings, they are tied to the liver somehow, so I think I'd want to see if a doctor in the States can confirm his readings.  They can fax his info to you.

       

      I guess the left foot could be neuropathy from the transplant.  With the stroke I think it would be hard to tell.

       

      Overall, it does sound like he's doing well.  I hope it continues.  Keep us posted.

       

      Blessings

      • Re: Three weeks after transplant... waiting for him to come home...
        PinkHat Registered Users
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        Thank you, Tex.

         

        Yes, he is doing good, it is just this liver problem that he deals with. I might be wrong about the tryglicerides issue, but that's what my syster told me. As I said in my previous post, she really does not have that time to go to the hospital and personally talk to the doctor about all these things because she has two small kids and no family around at this time. She reads those papers and than tells me what they say... so chances are that I might not be 100% accurate. But, yes, you are right, she also mentioned something about cholesterol, but I did not find it so important... lots of people have high cholesterol and they did not go through a transplant. I think it's a good idea to ask her to fax or scan...

         

        Also, as I told you, I don't ask too much lately... I don't want them to feel that pressure any more, thinking day and night that something is not right, so I try to stay positive, talk about kids and some other issues, we even try to make some plans of family reunion as my baby's going to arrive soon

         

        This morning, I dared to ask her about the medication just because she mentioned the doctors gave him a new pill, called Myfenax (mycophenolate mofetil) which they said it is mostly used after liver, kidney or heart transplant. I guess they try to stop the "attack" of the new cells over his liver... So, as I said, I asked about the other pills that he takes. For the ones I found, I put in paranthesis the active substance or the generic name, as they might not be called the same in the US. Here they are:

         

        Kepra (Levetiracetam)  - he started getting this right after they found out about the stroke and never was out of it.

        Gardenale

        Sanimmune (cyclosporine)

        DeltaCortene (Prednisone)

        Diflucan (Fluconazole)

         

        Anyway, we try to stay positive. I know a lot of people experience worse effects after the transplant, and I try not to worry that much. I don't know how serious the liver problem might be, but the rest of the tests he had lately came out pretty good. My sister said that the results of the CAT scan was very good, the bone marrow tests were fine, his blood count was very good last time, it is just the liver... keep praying!

         

        Thanks again, I will let you know of future changes...

        God Bless Everyone Here, All of You are in our prayers!

         

        Olimpia

        • Re: Three weeks after transplant... waiting for him to come home...
          Tex Registered Users
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          I don't think a transplant can affect a person's triglycerides.  High cholesterol is an issue unto itself but, when it gets high enough, it needs to be dealt with.  We don't want to go through all of this then keel over because of clogged arteries.

           

          The liver stuff might be a big concern or not.  Like I said, the enzymes tell a lot.  Eventually, I'd want a biopsy.  In fact when my liver enzymes increased I kept pushing for a biopsy and the doc at the Hutch wouldn't pursue it.  Finally, after a lot of images, they suggested it to my local onc who got me in touch with a top notch hepatologist and she had the biopsy done.  Turns out I have a really rare liver condition.  (Of course, I only allow the rarest of diseases to mess with me. )

           

          To be honest, the liver can become a major problem but it isn't much more often than it is.  I wouldn't get overly concerned unless and until they diagnose a major issue.

           

          Blessings

          • Re: Three weeks after transplant... waiting for him to come home...
            PinkHat Registered Users
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            Hi Tex and thank  you for your post.

             

            I did not talk to them within the last two days, but I will update over the weekend. I don't know if the new pill, Myfenax, that he is taking has any effect or not... or maybe it is too early to figure that out yet.

            Anyway, it was good to hear that unless the doctors find a real serious issue with his liver, everything should be fine.

            I have to tell you that he is fine, he is just back to normal, even though I think he needs a little psychological help to cope with everything. This guy never had any problem in his entire life, he would not go to the hospital for nothing in this world, that's how he ended up going that late... Even though everything seems to be back to normal, as I said, I think he needs some help to get used to the situation. He is overly concerned about the fact that the disease will come back, he feels powerless when it comes to their financial situation as he lost a lot of business, of course, but overall they are doing fine. I would like him to be more positive about everything, but I know that it is easier to say when you just look from outside... like me... even though I care a lot... you know I do...

            I will ask again about the liver tests... last time we talked he was scheduled to go to the hospital every day due to this issue. Before he only went once or twice a week. Let's hope and pray everything will go back on the right track! God help us!

            Blessings and many thanks,

             

            Olimpia

             

            BTW: that thing with you allowing the rarest diseases to mess up with you really made me laugh ...  I am sorry to hear about your issue with the liver, but I was glad to hear you making fun of it. You're a fighter!!!! Keep going!!! Your name is in my prayers!

            • Re: Three weeks after transplant... waiting for him to come home...
              Tex Registered Users
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              I don't know that I'm such a fighter.  I just realize there are things that go on in life that our completely beyond my control and I try to roll with the punches.  I've found humor makes hitting the ground when you roll just a little easier.  Still, it's unfortunately more truth than not that I only get rare things that I've never heard of before.  Hell, AML might be one of the most common diseases I've ever had.  And there's, what, 10k cases in the US every year? 

               

              With some of that in mind, don't fret so much about the whole positive attitude thing.  When your body has been attacked like this and your life has been turned upside down, it's hard to maintain a lot of positivity. 

              Around here, we've kind of taken to encouraging folks to simply stay determined to fight the fight.  You can stay determined even when they tell you you've relapsed...and that news really sucks...not a positive moment in one's life.  Your dad sounds plenty determined and that's great.

               

              And I don't think life ever gets back to "normal" for us.  They speak of a new normal.  We grow around our old norms and become who we are today.  (We're the same inside for the most part but we have physical and.sometimes, emotional limitations.)

               

              Blessings

  • Re: Three weeks after transplant... waiting for him to come home...
    susantheresa Registered Users
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    Hi Olimpia,

    My name is susan and I had a stem cell transplant in 2005.  It was a rough road and not without some setbacks.  It does take a long time to recover and please know that patience more than anything will become your best attribute.  I am sorry to hear of his stroke and was wondering if it was related to his disease.Prior to my diagnosis, with my immune system so compromised, I contracted an accute viral infection that left me deaf in my left ear.  They tried to restore it for about a year to no avail.  I dont miss it now because I am grateful to be alive. I will keep you and your family in my prayers and know that just your presence, helps your family.  I will pray for positive things for you.  Susan M  Ps. I have been disease free since December of 2005.  He is on the right road.

    • Re: Three weeks after transplant... waiting for him to come home...
      PinkHat Registered Users
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      Hi Susan and thanks for your post!

       

      I was thinking that now I have two Susan on my list of prayers, because we have another friend here whose name is also Susan .

      It was hard to cope with the situation, but indeed, we learned what patience really is. I remember an old post of Trey, another friend here on this board, who also told me to have patience at times when my brother was dealing with the after stroke recovery... it was just horrible what he had to go through!

       

      I am sorry to hear about your problem with your hearing, but I admire you (like I admire everybody on this board) for staying positive and keep fighting. To answer your question, yes, the stroke was actually caused by the diseases, and we even identified the moment when that happened. It was sooooo awkward, but to make the story short, as you probably did not get to read our story from the beginning, when he was diagnosed nobody figured out that he previously had a stroke. It was only after his first week in the hospital, when grabbing his stuff because the doctors released him, that my sister went to take him home and noticed that it's not really him. As she told the doctors he is not o.k., they did a complete CT scan and found out about the stroke, but at that time it was already that bad that they told us to pray because nothing could be done. Anyway, we almost lost him and nobody believed that he will ever come back the way he is today.

       

      In the beginning everybody believed that the initial chemo caused the stroke, but in fact that was not true. As we tried to remember every little detail, we actually discovered that the stroke happened a few days prior to the diagnosis...he was driving and all of the sudden he pressed the breaks. When my sister asked him what happened, he said that he thought it got dark outside (like entering a dark tunnel) and since that moment he started having blurred vision in his right eye. The problem was that everybody was so shocked when the diagnostic came up, that nobody, including him,  mentioned to the doctors about this problem with the blurred vision (which we read after, is one of the signs of stroke). It was only after the stroke was identified by the doctors (almost two weeks since the moment I described and one week after the diagnosis), that we realized all these things. The doctors could not really intervene in any way because it was too late by that time... and anyway I don't think they could have done much more even if they discovered that right away, due to the leukemia diagnostic. That's a small part of the story...

       

      When you mentioned the viral infection you got prior to diagnostic, it reminded me of another episode that happened a few months before his diagnostic. He got chicken pox as his daughter contracted from some other kids at kindergarten. He almost died at that time... I remember that in the beginning we just did not worry too much because we knew that those types of kids' disease are more violent in adults, but he eventually went to the emergency room, that's how bad he felt and, I have to say, he looked. At that time the doctors performed blood tests and it is still beyond my understanding how did they get confused in such a way. I am sure they noticed his unusual WBC and they should have questioned that... instead they gave him some medication and sent him home... He finally got rid of it, but I still think it is unacceptable to not figure out or at least question and investigate further... his WBC was around 400 000 when he was diagnosed with CML.

       

      Anyway, I am really happy to hear that you are disease free, that's what we hope for, too. Now it is almost four months since he had the transplant and I think it is still too early to figure out a lot of stuff... as you said... He is fine now and we are trying to be patient and pray for the best. God already gave us the miracle of having him back! We cannot thank Him enough for that... We will pray that the new immune system "befriends" his liver.

      God Bless You and Everyone here! You all are in my prayers.

       

      Olimpia

  • Re: Three weeks after transplant... waiting for him to come home...
    PinkHat Registered Users
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    Hi everyone again!

     

    I am trying to post for weeks, but with the baby coming soon and some renovation projects going on in my apartment, I barely had time to do anything... and God, I am sleeping like a piglet and working full time drains all my energy... but it is all for the best cause in the world  

    Anyway, I wanted to update on my brother's progress and let you know about the liver problem that gave us so much hard time. The test that was not right was not related to the triglycerides as I initially thought (Tex, you were right!) but to the so called GGT (Gamma-glutamyl transpeptidase) if that tells anything. I understood that the normal level is between 0-51 and his was way over 3000 (which is very common in case of alcoholism... and my poor brother is not drinking at all). As I told you already, the doctors prescribed him medication that is usually given to patients with liver/kidney/heart transplant and the level decreased to 1800, which is not great, but it is better than 3000.

     

    My brother is currently in the hospital... he was taken in yesterday when he went to the emergency room due to severe diarrhea, fever and because he felt something was not o.k. Moreover he was dealing with some type of a cold with a runny nose and light coughing for more than a month, but doctors did not seem to worry about it. He was prescribed Nasonex, but not sure if that is the same as here...  I know here it helps with allergies and not treating cold, but who knows?!!!

    Anyway, the fever went away by itself, but the doctors kept him in the hospital due to a newly discovered pulmonary infection. I honestly did some research yesterday and I stopped because I got scarred... besides that, I do not know enough details and I don't want to add to my worries especially now, that I have 3, probably 4 weeks to go until my baby will be born...

     

    The hardest part though seems to be the fact that he seems to loose faith and his pessimistic nature does not do any better. His biggest fear is a relapse... the last blood tests were not great. His WBC is now 16,000 which is over normal, but I know that it can vary after the transplant. Again, I don't know if this level could be considered a normal variation or not. My whole family is trying to encourage him, but I guess his fear of relapse just offsets our encouragements.

    That's pretty much all I have. I will keep you posted and please forgive me if I don't post as often as I should. You all are in my prayers and if you have any thoughts about how you think my brother is doing, please do not hesitate to share.

    God Bless Everyone! Keep praying!

     

    Olimpia

    • Re: Three weeks after transplant... waiting for him to come home...
      Tex Registered Users
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      Hi Olimpia,

       

      Let's start with the WBC.  Having them at 16k is certainly high but not high enough to figure relapse.  The doc needs to keep an eye on those, though.  I guess if he's still in the joint they're doing daily CBCs so that shouldn't be a problem.  Just keep an eye on them to see if they keep trending higher.

       

      If it helps, I have no idea wth GGT is.  Never heard of it.  So, you're not alone there.

       

      I had a really bad respiratory infection about five years ago.  That was well after my SCT but it had me concerned.  Give it time, it should get better. 

       

      Everyone gets tired during this fight.  We all have very down, "I don't wanna!" moments.  All we can do is put one foot in front of the other and hope we don't fall down.  I suspect your brother will bounce back when he starts feeling better.

       

      Do keep us posted when you can.

       

      Blessings

    • Re: Three weeks after transplant... waiting for him to come home...
      KyGuy Registered Users
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      Let's see, he has a pulmonary infection, diarrhea, a cold and a cough and his WBC is 16k.  I'm surprised it's not higher with all that going on.  The docs probably won't be thinking relapse unless it goes over 30. 

       

      It's nearly impossible to stay optimistic throughout this process.  If he's normally pessimistic then he should be on an anti-depressant (my non-medical opinion).  We need everything to fight the issues even after a transplant.  If his attitude is continually negative, you may want to get some help for him - social worker.

       

      Take care,

      Kelly

    • Re: Three weeks after transplant... waiting for him to come home...
      susantheresa Registered Users
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      Hi Olympia,

      I hadn't heard anything from you and was wondering how everything and everyone was doing.  Please know that sometimes we go back to the Hospital often for all kinds of things post transplant.  I was at my Doctors every Monday and thursday for over one year.  I mostly had to get Magnesium I.V.s. and I after a while it was so taxing on me I wanted to just say the heck with it.  Of course i didn't because I relied on others to pick me up. I know that is is emotionally taxing on everyone but the fight is well worth it. I surprised myself because I never knew that i had it in me.  After a while, I thought where else was I suppose to be?  Nowhere because that was my mission at that moment. To fight a good and sometimes an unfair fight but I gave it all that I could.  Downer day's i called them, but I tried not to stay down too long but did recognized that I had to go there to get to the other side.  Most of that we don't figure out till it is almost over ( the treatment I mean) There is this picture of an Angel that my sister in law put in my hospital room (I took it home and now it hangs by my front door in my house.  For He Shall Command His Angels Concerning You, To guide you and Watch Over All that you do.  Psalm 91.  I will think of you and your Family.  Glad to hear from you.  Susan M. 

  • Re: Three weeks after transplant... waiting for him to come home...
    PinkHat Registered Users
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    Hi everyone again!

     

    I know you have not heard from me in years... I had my baby by the end of June and my schedule is very busy to say the least. As my company does not offer paid maternity leave, I have to work from home plus from 5:30 to 9 PM in the office in order to get paid, so I literally did not have time to do anything...

    Now...enough with me, let's talk news about my brother. He is doing fine and the last results of his blood tests came out pretty good as far as I could figure out. I was thinking to scan the last results to someone who can really interpret them, especially that most of the time they list the English version of the final result. (You know they are in Italian).

    Anyway, he feels good almost 8 months after the transplant, but he tells me that he cannot get rid of the anxiety and all sorts of thoughts of this disease coming back, that bother him every day. We all try to calm him down and explain that life should go back to normal... I know it is simpler to talk, but we try our best. Due to this continuous fear, he wears a medical face mask, including home around his own kids. He also wears it when he goes outside, including the park or any other place outside, not only in the stores where it might be necessary as those places are usually really crowded in Italy. Anyway, I told him he should give that mask up at home and when he goes for a walk to the park or outside... What do you think? Is that mask necessary all the time? I understand that it is, immediately after the transplant, but not late after... maybe I am wrong. ..

     

    Another thing that I should tell you about is a recent episode that happened just a few days ago... they went back to Romania to visit with family. At some point, my sister found him with his eyes wide open and talking non sense... in fact he was sleeping and when he really woke up, he did not remember anything. My family called the ambulance for emergency, when they came he was up and running, not remembering anything... the doctors checked his blood pressure and they said he is o.k.... and he was O.K. 

    I am thinking that this might have been a sort of epileptic moment caused by the fact that he felt insecure as he was far from hospital in Italy as well as the recent decision of his doctors of taking him off Kepra (that medication he got for neurological issues he had).

    That's all I have... right now he went back to Italy for his regular tests, I will keep you updated.

    God bless everyone here! You all are in my prayers.

     

    Olimpia

    • Re: Three weeks after transplant... waiting for him to come home...
      KyGuy Registered Users
      Currently Being Moderated

      Olimpia,

       

      Seizures can be a side effect of the transplant.  He should be checked and put on medicine if they determine that's what he had.  It is good to hear that he's doing well.  It's difficult not to worry but the thing is, it's either going to stay away or come back.  Worrying about it isn't going to change a thing.  Tell him that worrying is like sitting in a rocking chair - he's doing something but not going anywhere.

       

      Congratulations on your baby!

       

      Take care,

      Kelly

    • Re: Three weeks after transplant... waiting for him to come home...
      Tex Registered Users
      Currently Being Moderated

      Congratulations on the baby.  New life is always a joy to know about.

       

      Actually, after about 10 minutes and standard medical procedure mask is pretty much worthless as far as keeping the germs in or out.  Once the moisture from our breath soaks through them, they really don't offer any direct protection.  Of course, one thing they do is keep other people's germs away because we all remember the SARS outbreak and people will avoid being around a masked person.  But that's all a procedure mask really does.  Kelly and I never wore masks through our entire post-transplant recovery.

       

      Now, if it's a better mask, it might do more to protect your brother.  But I doubt it's necessary or really helpful at this point.  In order for his new immune system to fully mature, it's going to need to get some experience fighting off diseases.  He's kind of keeping himself from moving forward by still wearing it.

       

      That's my guess anyway.  As always, he needs to be in contact with his transplant center and see what their protocols are.  Then he needs to do what they tell him to do.  I suspect they'll tell him to throw away the masks.

       

      From the description of it as I'm reading it, I can't help but wonder if he wasn't just sleep talking.  We just spent the weekend with our grandson and he sleep talked every night.  Eyes wide open, mumbling something.  It wasn't a seizure, his dad did the same type of thing but tended to be far more mobile, as in sleep walling.

       

      As Kelly said, he should bring it up with the doc.  Still, I'm thinking it's probably not much of anything, if that.

       

      As for anxiety about relapsing, that's normal and I'd let him worry about it.  We often note around here that friends and family members are able and ready to move on way before the patient is.  The complaint is often that the F & Fs keep trying to put us into a place they want us to be and we're not ready to be.  Be there and be supportive.  Reassure him, I know I needed a lot of that, even though I knew my wife couldn't possibly know it wasn't coming back that was a great thing to hear and I needed to hear it often.

       

      I do think he might be overdoing it.  Counseling might be in order if he doesn't start getting out of his cocoon more, but eight months isn't that far out to the patient.  Let him find his way.

       

      Blessings

  • Re: Three weeks after transplant... waiting for him to come home...
    PinkHat Registered Users
    Currently Being Moderated

    Hi everyone and God Bless!

     

    I hope everybody is doing fine... we are extremely sad... Today we got the last results of my brother's bone marrow test. As of now, I don't have to many details as my sister was not able to give me too many details. She was crying, sad, taking care of two little kids who probably have the slightest idea that something is not quite as it should be... and my brother was out to his doctor to pick up some prescriptions... I guess. I have moments when I really don't want to talk, like now, but I decided to post here because I know you do understand what I feel... in fact, you all know better than me.

    Today my brother joined the clinical trial for ponatinib... from what I know, nothing else works any more... I will come back with more details, please forgive my lack of coherence.

    God bless you all, you are in my prayers every day. And I thank you for being here and reading my thoughts.

     

    Olimpia

    • Re: Three weeks after transplant... waiting for him to come home...
      tranier Registered Users
      Currently Being Moderated

      O...

      I think it was meant for me to get back on LLS after taking more than a months break...BJ has used Containing post transplant for extramedullary tumors and it kicked the into high gear...all tumors leukemia free (they were only 4 cm)...All is going extremely well...Nov 2 was the one year mark...I pray Ponatinib will help your b.in.law also!   Love..hugs...prayers!

    • Re: Three weeks after transplant... waiting for him to come home...
      Tex Registered Users
      Currently Being Moderated

      I'm sorry, Olimpia.  Still, though it might seem rough, I'm hoping you got some better and more clarifying news after posting.  If they're putting him on a med, then they haven't given up and still think he can be brought back into good or better health.

       

      I hope you can update us with some more details sometime soon.  I'll keep my eye open.

       

      Blessings

      • Re: Three weeks after transplant... waiting for him to come home...
        PinkHat Registered Users
        Currently Being Moderated

        Hi everyone and God Bless!

         

        Thank you for your posts... We were just devastated, the whole family felt like we lost the war... We are just trying to recompose ourselves and figure out a way of moving forward.

        I wasn't able to get too many details, but I asked them to read the results of the test... or anything they considered a reason good enough for his doctors to put him on Ponatinib.

        After almost a year from transplant and after so many months of negative PCR, yesterday his last tests showed PCR positive, nested PCR positive, BCR-ABL % is 1.96%.

        We are so scarred that I hardly find words to post here.

        Tranier, I am so happy that BJ feels good and he is doing fine on Ponatinib...That gives me hope and desire to pray for miracles. I know God gave us the miracle once and I also know that we did not thank enough for His gift... but the idea that this is the last thing the doctors could do for my brother scares me to death. I don't know what to say... I pray God to give us another miracle... for my sister's babies...

        Thanks for reading my posts. You all are in my thoughts and my prayers. I will keep you posted

        God Bless!

         

        Olimpia