Last Thursday I had blood work, and then I saw Dr. G. We had to wait a while for the blood work to come back because apparently the platelets were so low that they do an additional test to actually double check their counting. But the good news was that they were up from 17,000 to 29,000. However that’s still much lower than the 150,000 normal. It was high enough though that it did not justify a transfusion.
They will not start me on the PARP inhibitors until my platelets come up. And because I’m having platelet issues, Dr. G has chosen a different PARP inhibitor than the one he originally was going to use. This new one is called rucaparib. It apparently is easier on platelets than the other one.
The CA-125 however was 35. It did not come down this time, it went up a little, actually, so we asked about that. And the consensus of Dr. G, his resident, and nurse was that this is why the CA-125 is not used as a diagnostic tool because it’s not reliable enough. What is most reliable is the CT scan which came back clear, which is to say 99% clear, not NED (no evidence of disease.) Having a CA-125 in the neighborhood of 30 to 35 is maybe my new normal, or it could be influenced by other causes of inflammation. Their lab considers anything 35 and under to be in the normal range.
I saw Jo my oncological exercise physiologist after the appointment. She is such a good resource. She has done this work for a long time and so has seen and heard a lot. She agreed that the CA-125 is not reliable. She gave an example of a person she knew who had had a CA-125 of 8 after first treatment and it never moved from that and yet she died of ovarian cancer. So I guess I’m not gonna worry about the CA-125 too much.
Jo had me do some treadmill, some balancing, arm weights, and stretching. My goal until my numbers come back up is 6,000 steps a day, no gym (immune compromised,) and absolutely no falling (low platelets.)
Dr. G’s staff had scheduled me to have additional blood work yesterday, Monday, and the platelets have come up to 66k, but apparently he is looking for 100k before starting the PARP inhibitor, as well as getting my Absolute Neutrophil Count (ANC) up to 1.5 which as of yesterday was 1.3, with the low end of normal being 1.7.
Tomorrow, Wednesday, I’ll have the whole quarterly set of labs done for Dr. West, and then I’ll see her in two weeks and she will advise accordingly. I suspect she won’t be happy with where I am. She wanted NED on the CT Scan, and CA-125 of 10 or less, and I can’t claim either. But it is what it is at this point. We’ll see.
That’s what I know for now. I’ll have the platelets and ANC checked again next Tuesday for Dr. G and maybe at that point I’ll be ready to go on the PARP inhibitors.
Enjoy the bleak midwinter in whatever way you can (assuming you’re most likely reading me from the Northern Hemisphere – Happy Summer if not! Wish I were where you are!) Maybe some hot cocoa, a fire in the fireplace, and a good book? Whatever floats your boat.
Hey, catching up to your news. You are on my mind more than you know. I think about you and your daily fight to stay healthy. My best to you and Grant, as always.
LikeLiked by 1 person