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Titti
Member
Username: Titti
Post Number: 2
Registered: 03-2012
| | Posted on Saturday, March 03, 2012 - 06:17 pm: | 
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Hi,
I’m new here and I’m writing from Italy. I’m very worried about my brother and I wonder if someone can help me.
He had liver tx in Oct. 2010 (HCV cirrhosis) and everything was simply great for a year. At the end of Oct. 2011 he got sicker and sicker: several infections, bile ducts needing lots of ERCPs, stents in hepatic artery and portal vein… In December he was finally diagnosed with a PTLD-related ALCL (EBV+, ALK-, CD30+), which seems to be extremely uncommon.
Reducing /changing immunosuppressants didn’t help, nor did Rituximab.
Now he is trying Brentuximab-Vedotin (sgn-35, commercial name Adcetris), but it’s almost a new drug and I haven’t been able to find anything about its use in PTLDs (news are just about trials results on “primary” ALC lymphomas). His docs can’t give more information either, they are also using it for the first time.
Has anyone experienced it? Or can tell me where to look for informations?
Thank you in advance. All the best to all of you.
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Hostess Rise'
Board Administrator
Username: Rise
Post Number: 17238
Registered: 05-2003
| | Posted on Monday, March 05, 2012 - 06:25 pm: |
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Hi Worried Sister
Welcome
I am very sorry your brother is going through so much. So much to deal with. I suggest you reposting your question to our liver forum.
The only thing that seems to help me heal from a virus is getting a good amount of sleep and eating very healthy. Moderate exercise when possible is always helpful.
Tell your Brother I will be thinking of him and wishing him well.
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papillonbleu
Forum Leader
Username: Papillonbleu
Post Number: 2171
Registered: 10-2007
| | Posted on Tuesday, March 06, 2012 - 08:41 am: |
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Welcome! My heart just goes out to you and your brother. I am sorry that he has been experiencing such a rough time. I'm afraid I do not have any knowledge on the treatments you mention, but I will be sure to keep you both in my thoughts and prayers. I hope that your brother may recover. May you be blessed for caring for him so much. Many hugs.
Bobbiejo
Forum Leader-Multivisceral
dx: GERD 1995, gastroparesis 2002, pseudo-obstruction of the bowel 2004
multivisceral transplant, 6 organs, 10/06/05
University of Miami/Jackson Memorial Hospital
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Titti
Member
Username: Titti
Post Number: 3
Registered: 03-2012
| | Posted on Tuesday, March 06, 2012 - 08:09 pm: |
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Dear Rise’
Thank you so much for your welcome. My brother is still in hospital and I’m looking forward to having him home and caring for him as you suggested.
Anyway I’ll try and repost my question to the liver forum, although I hope nobody will ever have (and/or have never had) to deal with things like that.
Dear Bobbiejo
Thanks for taking the time to answer my post despite the health problems you’re dealing with.
Hope your doctors will soon be able to find the right answer to them and help you to recover quickly . You’ll be in my thoughts.
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