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Old 09-07-2005, 04:33 PM   #1
*_Celina_*
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My sister is on the Lapitinib trial at Dana Farber.
Results were mostly good: brain mets are stable and MRI showed some small improvements.
We seemed to have found out what is causing her incredible fatigue (might be the case with Sherry). Lapitinib is said to be very hard on the liver. The not so good news was that her liver function is not good. Dr. Burstein thinks it is because of the drug. He has asked her to refrain from taking the drug until liver function improves. She will have blood work on Monday to see if there is an improvement and repeat blood work a few days later. Once liver function is back to normal she will resume the drug at a reduced dose (2 pills twice daily) He also said that most people on the trial eventually go down to two pills instead of three. If liver function doesn't improve she will have to have scans to try to determine if the liver mets are worsening. (Hope it doesn't come to that!) Another thing that he said would definitely cause the fatigue is the amount of decadron that she is on (4mg four times daily). He is slowly reducing that to half. So again, we are pleased and hopefully that she can get her liver function back to normal. This, and the reduction of the decadron, will hopefully help her to feel better.
I recall somebody posting recently about a friend of theirs who was on Lapitinib for sometime and doing well...am curious to know if she is on 2 or 3 pills...anyone know who this might be? I worry that 2 won't cut it.
BTW the total raised from Saturday's golf tournment in now 17,000...isn't that incredible!! People were unbelievably kind and generous. We will be forever grateful.
Thanks for reading and encouraging.
Celina
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Old 09-07-2005, 09:46 PM   #2
Lolly
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Celina, I'm so relieved to hear the good news. Thank you for keeping us posted, and I'll be keeping you all in my thoughts and prayers.

<3,
Lolly
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Old 09-08-2005, 11:13 AM   #3
StephN
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Dear Celina -
Thanks for the post. There IS some encouraging news.

Having been on that same dose of Decadron as Carole earlier in this year - I KNOW that is a big part of her fatigue. The drug doesn't let you sleep and it has a wasting effect on your muscles. I was to the point where I could hardly go up and down the stairs. It affected my breathing!

Hopefully Carole is taking at least 200 mg of CoEnzyme Q10. She also needs extra protein to make up for the damage done by the Decadron. She should have an egg every day as well as things like lentils.

Exercising is the last thing we think about when flattened by Decadron, but she needs to do some kind of exercise every day. It really will help.
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