Update on me

December 3, 2008

Hi all

Just thought I'd give a brief update on how I'm doing. Some of you may

recall that I'm dealing with Post Transplant Lymphoproliferative

Disorder (try saying that three times fast!) since having Epstein Barr

Virus earlier this year. I just saw my hematologist today, and she said

that I seemed to be doing well. Last CT scan showed improvement in the

enlarged lymph nodes (although they're still pretty enlarged). So

things are at least moving in the right direction. My Epstein Barr

levels are still undetectable so that's good too.

I also clarified something that I'd been a bit confused about for a

while. Earlier, my Hematologist had told me I had a " low grade

lymphoma " . Then a while later, Dr. Raiford, my hepatologist, said that

the PTLD hadn't " transformed into a full blown lymphoma " . That seemed

to contradict what she said, so I wasn't quite sure what to think.

Today I asked her and she confirmed that as far as they can tell, it

isn't a full blown lymphoma at this point, which takes a load off my

mind! I'm still not sure why she used the term lymphoma earlier. She

may have been oversimplifying for me, or maybe she thought that's what

was going on. I know that there was some confusion and debate among my

doctors there for a while as to what was actually going on with me.

So overall it's encouraging news, if not quite as good as I'd like it to be!

athan

December 3, 2008

Hi!Are you by any chance on Mercaptopurine?ThanksShaulPSC UCSent via BlackBerry by AT&TFrom: athan Date: Wed, 03 Dec 2008 20:07:11 -0500To: < >Subject: Update on me Hi all Just thought I'd give a brief update on how I'm doing. Some of you may recall that I'm dealing with Post Transplant Lymphoproliferative Disorder (try saying that three times fast!) since having Epstein Barr Virus earlier this year. I just saw my hematologist today, and she said that I seemed to be doing well. Last CT scan showed improvement in the enlarged lymph nodes (although they're still pretty enlarged). So things are at least moving in the right direction. My Epstein Barr levels are still undetectable so that's good too. I also clarified something that I'd been a bit confused about for a while. Earlier, my Hematologist had told me I had a " low grade lymphoma " . Then a while later, Dr. Raiford, my hepatologist, said that the PTLD hadn't " transformed into a full blown lymphoma " . That seemed to contradict what she said, so I wasn't quite sure what to think. Today I asked her and she confirmed that as far as they can tell, it isn't a full blown lymphoma at this point, which takes a load off my mind! I'm still not sure why she used the term lymphoma earlier. She may have been oversimplifying for me, or maybe she thought that's what was going on. I know that there was some confusion and debate among my doctors there for a while as to what was actually going on with me. So overall it's encouraging news, if not quite as good as I'd like it to be! athan

December 3, 2008

Hi!Are you by any chance on Mercaptopurine?ThanksShaulPSC UCSent via BlackBerry by AT&TFrom: athan Date: Wed, 03 Dec 2008 20:07:11 -0500To: < >Subject: Update on me Hi all Just thought I'd give a brief update on how I'm doing. Some of you may recall that I'm dealing with Post Transplant Lymphoproliferative Disorder (try saying that three times fast!) since having Epstein Barr Virus earlier this year. I just saw my hematologist today, and she said that I seemed to be doing well. Last CT scan showed improvement in the enlarged lymph nodes (although they're still pretty enlarged). So things are at least moving in the right direction. My Epstein Barr levels are still undetectable so that's good too. I also clarified something that I'd been a bit confused about for a while. Earlier, my Hematologist had told me I had a " low grade lymphoma " . Then a while later, Dr. Raiford, my hepatologist, said that the PTLD hadn't " transformed into a full blown lymphoma " . That seemed to contradict what she said, so I wasn't quite sure what to think. Today I asked her and she confirmed that as far as they can tell, it isn't a full blown lymphoma at this point, which takes a load off my mind! I'm still not sure why she used the term lymphoma earlier. She may have been oversimplifying for me, or maybe she thought that's what was going on. I know that there was some confusion and debate among my doctors there for a while as to what was actually going on with me. So overall it's encouraging news, if not quite as good as I'd like it to be! athan

December 3, 2008

Hi!Are you by any chance on Mercaptopurine?ThanksShaulPSC UCSent via BlackBerry by AT&TFrom: athan Date: Wed, 03 Dec 2008 20:07:11 -0500To: < >Subject: Update on me Hi all Just thought I'd give a brief update on how I'm doing. Some of you may recall that I'm dealing with Post Transplant Lymphoproliferative Disorder (try saying that three times fast!) since having Epstein Barr Virus earlier this year. I just saw my hematologist today, and she said that I seemed to be doing well. Last CT scan showed improvement in the enlarged lymph nodes (although they're still pretty enlarged). So things are at least moving in the right direction. My Epstein Barr levels are still undetectable so that's good too. I also clarified something that I'd been a bit confused about for a while. Earlier, my Hematologist had told me I had a " low grade lymphoma " . Then a while later, Dr. Raiford, my hepatologist, said that the PTLD hadn't " transformed into a full blown lymphoma " . That seemed to contradict what she said, so I wasn't quite sure what to think. Today I asked her and she confirmed that as far as they can tell, it isn't a full blown lymphoma at this point, which takes a load off my mind! I'm still not sure why she used the term lymphoma earlier. She may have been oversimplifying for me, or maybe she thought that's what was going on. I know that there was some confusion and debate among my doctors there for a while as to what was actually going on with me. So overall it's encouraging news, if not quite as good as I'd like it to be! athan

December 3, 2008

athan:

Good news is good, however how small.

Continued improvement.

dee wife of bob

December 3, 2008

athan:

Good news is good, however how small.

Continued improvement.

dee wife of bob

December 3, 2008

athan:

Good news is good, however how small.

Continued improvement.

dee wife of bob

February 3, 2009

Sorry to hear about all these things that are going on with you. I hope they resolve in your favor sooner rather than later.Marie

To: From: thegeorges2@...Date: Tue, 3 Feb 2009 12:47:14 -0500Subject: Update on me

Hi all!

Just thought I'd give an update on what's going on with me, since I just

got back from a major Dr. visit complete with CT scan yesterday.

I saw Dr Raiford, (transplant Dr.) Dr Reddy (hematologist/oncologist)

and Dr. Dummer (Infectious Disease), so I got a thorough looking at.

The CT scan I had showed not much change (they were looking at the lymph

nodes to see if the enlarged ones had grown or shrunk). Most of the

lymph nodes were about the same but some had grown just slightly.

That's not really good news but not as bad as it could be. Dr. Reddy

wants me to have a few more rounds of Rituximab to see if that will

help. I also got tested for a fungal lung infection (I've got a cough

and fevers, and had an exposure to bird droppings a few weeks ago) but

results aren't back on that yet.

The CT scan also showed an enlarged thyroid, so they want to do an

ultrasound of that, and Dr. Dummer heard a heart murmur which he's

looking into to see if it's new or not.

I guess at least I'm interesting to my doctors!

athan

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February 3, 2009