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BGL530830
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BGL530830

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      • August 31, 2010 at 12:46 pm
      BGL530830
      Participant

        Not good news here….  The Drs said his liver is functioning at a 1/4 of its capacity…and it will not come back.  I can't believe this.  I know Drs can be wrong and I hope for a miracle.  the disease in his chest progressed – not much, but a little bit.  I keep hoping "this is just ipi and his disease is going to regress spontaneously."  he is in ICU right now and we are preparing for the worst and hoping for the best.  Is this hopeless?

        • August 31, 2010 at 12:46 pm
        BGL530830
        Participant

          Not good news here….  The Drs said his liver is functioning at a 1/4 of its capacity…and it will not come back.  I can't believe this.  I know Drs can be wrong and I hope for a miracle.  the disease in his chest progressed – not much, but a little bit.  I keep hoping "this is just ipi and his disease is going to regress spontaneously."  he is in ICU right now and we are preparing for the worst and hoping for the best.  Is this hopeless?

          • August 18, 2010 at 7:18 pm
          BGL530830
          Participant

            So, did the Ipi make him Anemic?  Did he have a low RBC?  My husband became Anemic after staring the Ipi…curious if it has happened to anyone else.

            • August 18, 2010 at 7:38 pm
            BGL530830
            Participant

              Thanks for responding.

              His side effects were:

              Fever (started exactly 12 hours after the first Ipi infusion, which is why we and the Drs. believe it is from the Ipi and not the disease itself)

              Rash 5 days after the first infusion.  It lasted a few days, then went away completely after he took claritin.

              Fatigue (probably due to the Anemia).  

              Anemia found via his blood work

              Insomnia

              Major nausea/vomiting.  That started when he tried Temodar back in April and it is still rampant!!  

              He has had pain in the past, but it has really improved the last few weeks.  

              Who knows what these issues really stem from.  Could be Ipi, Anemia, or disease.  

              He has had 3 infusions and was to get the final 4th one today, but they will not give it to him because his LDH went up, but they said that is not necessarily from the disease, it could be from the destruction of RBCs or other things.  He will get scanned at the end of the month so we can see what ipi has done.

              He also developed a pleural effusion so he had fluid drained from his right lung (the one with the disease) and they did a CT scan to check the fluid and it also showed his disease in his chest has been stable since the beginning of May before the Ipi, so that was GREAT news!  The next scan will show the abdomen and pelvis as well, so we can see what is going on with his liver.  

              • August 18, 2010 at 7:27 pm
              BGL530830
              Participant

                My husband just finished three rounds of Ipi.  He also developed Anemia after he started the Ipi.  His Hemoglobin became dangerously low.  He has had two blood transfusions and just finshed 5 rounds of iron infusions.  DO you know what kind of anemia your loved one has?  i wonder if my husband developed autoimmune anemia because of the ipi revving up his immune system.  

                what other side effects did he have?  my husband has frequent fevers, rash, weakness, fatigue, pain and the anemia.  he also developed a pleural effusion.  we will find out in 2 weeks when he gets scanned.  i hope it worked.

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