Tuesday, September 29, 2009

PARP inhibitor

Explanation on new trial:
In normal cells PARP help repair DNA damage so that cells can divide. Parp inhibitors keep the cells from repairing themselves and therefore not dividing. PARP inhibitors in combination w/a chemo drug SHOULD damage cancer cells and prevent repair of that damage....in theory...

I start my PARP inhibitor tonight. Chemo tomorrow.

Results from my last scan came in today. Not pleasant. Dozens of bilateral lung masses up to 1 cm in size, increasing since scan on 9-6. (I am quoting the "dozens") How did "some dark spots that are so small we can't even tell if they are cancer" turn into dozens??? Small amount of fluid in my right lung and "moderately" increasing mass in my liver. Moderately? What does that mean?? I am left with more questions than when I started. How can all that be happening in my body and yet I feel so good? If this trial doesn't work, how fast will my dozens turn into 100's?

I spoke with a nurse today who informed me one of the medicines I have been on for several years is a diuretic and most people take it in the morning not the evening. Now don't you think that is information someone should have thought of telling me earlier?? Ya think that might be why I sleep so poorly and get up several times???

I can see from this post that I am just flat out cranky. Hard to be optimistic tonight. Tomorrow will most likely be better.

Love,
Nanc

Tuesday, September 8, 2009

Good news

Not just good news, great news. My "embarrassment" now called an "anomaly" is clearing itself. My CT and liver MRI show very little tumor growth AND if that is not enough, I have made the cut for the clinical trial I really wanted on when I first called Bethesda. I am off this trial, will start the new one in three weeks, provided my doctor at home thinks it is okay.

It is a little unsettling to not know what caused the problem, for me as well as the doctors here. I still have back pain, but it is manageable.

Thought for the week: Since my liver has been having problems, I have not been drinking AT ALL. I am part owner of a very expensive bottle of ice wine. A bottle that we have all put off opening because the occasion was never "special" enough. NOW it seems they will need to share it without me. Why do we do that? Why do we put things off, especially special things, because we think the current time is just not special enough? I'm not going to do that any more. Today is special enough for me to open that bottle of wine, wear that good shirt, take that time off, etc.

Hoping you don't delay either.

Love,
Nancy

Sunday, September 6, 2009

Packed

Packed and ready to go. My Uncle Buddy is almost 86 years-old. When I was diagnosed with ovarian he said "Find something funny that happens everyday, and call to tell me about it". That's the goal. Hoping to write tomorrow night with the humor for the day.

Nancy

Friday, September 4, 2009

starting out

Monday I head back to Bethesda. They will be doing another CT scan to see if they can figure out what is wrong with my liver, or at the very least what is causing it. What we know now is very little. The portal vein is blocked which keeps the blood from freely circulating through the liver. It is either caused from a trauma (the doctors call it an "embarrassment"), or the drug (MEDI 546) or from tumor growth. Any way you look at it, it is not good.

However, I don't know how "not good" it is nor do I know if they can do anything about it. I have a hunch I am not ok, but it is very unsettling to not know how sick I am. My back hurts. Sometimes it hurts a lot, I feel more fatigue. Otherwise, I am feeling pretty healthy.

This will need to do as a first start. I'm tired. Hoping for a fun day tomorrow, so much rest now.

love,
Nancy