Recent visit at MDACC 8/10

August 10, 2009

Hello to all,

Everything went as scheduled this morning. I had labs, ECG, Echocardiogram,and

drs visit with Dr Cortes, research nurse Jody, fellow intern, and nurse. Labs

still show low platelets at 24,000 (need to be 75,000 to restart the drug),

white count is still very low 1.2 (normal is 4-12) which means my ammune system

is still weak, hemoglobin 8,000 (normal 12,000 - ). I will be getting a

transfusion of red cells at 7:00 tonight. It takes about 4 hours so it will be a

late night. My flight isn't until 3:00 tomorrow afternoon so I will be able to

sleep in!!!!

There have been other patients who are in the same trial as me, AP24534, who

were in the HHT trial prior to this trial (as I was). Documentation by the

research nurses shows that these patients are taking a longggg time to recover

their normal blood levels, as I am. It took one man 3 months before he could

restart the drug. It has been 2 months for me with no drug. However.....the man

showed a very good response to the drug even though he had not been on it for 3

months. His disease was decreasing. So that is awesome news.

The research nurse said that if I wasn't in the trial I would be continueing the

drug at a lower dose. But....right now the trial protocol is determining the

" safeness " of the drug so they can not restart me at such low levels. If i were

to walk in the office with platelets of 24,000 at the beginning, I would still

be taking the drug. But since my platelets were 91,000 at the beginning of the

trial the research team says that it was the drug that caused the drop in

platelets. Hence, I hold.

Good news - I don't return until Sept 4th !!!!!!!!! I will have labs at

home twice a week as before and the results faxed to my research nurse. When

they reach 75,000 I restart the drug. In the meantime, I get ready to go back to

work Aug 21st and hopefully my energy level increases and my ammune system gets

stronger.

I'm feeling good except for the fatigue from low red cells. Hopefully after my

transfusion tonight I will feel much better.

Thinking of Beth, Bobby, Len, and anyone else on new trials. Praying we all

have good responses.

God's Blessings,

Jackie S.

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