My appointments at MD Anderson were today and some good things were in store for me and some things to ponder on. My tumor has shrank from 11.8 X 9.2cm to 11.6 x 8.8. BUT the FDG uptake (brightness of the tumor) has risen a little from 6.4 to 8.5. My CA 19-9 is lower than 3 months ago being at 19.5 today. I would have to look back to see what it was 3 months ago, but I believe it was 22.6???
So......as I looked at the 3 page report from the radiologist who read it....(it is usually 1 page long and maybe a little bit of a page 2) I was taken aback as it talked about all these nodules and just a lot of jibberish I wasn't used to seeing. I just flat out said...."Dr. Javle, I have never seen such a lengthy and scarey PET scan....like do I have cancer everywhere or just in the liver???" He replied it was just in the liver as it has always been but the radiologist went into great detail and most do not.
He believes I have a couple of choices...1). Stay on Irinotecan and come back in 3 months and see if the tumor really is getting brighter (which probably means the chemo is not working as well) OR 2). We could try radiation again (which usually doesn't happen with most patients but Dr. Javle has pleaded with them) and since the tumor has shrank, they are willing to do the radiation. Before, they were a little too worried about being too close to the heart and causing damage, but with the shrinkage, they say now is the time to radiate.
I went ahead and made an appointment for October 24 for Simulation (which is where they put tattoo dots to know where to radiate). I can call and cancel the appointment if we get home and change our mind. Otherwise, I just go for the Simulation (which only takes an hour), then go back home for a week and then back again to Texas where I will get 26 treatments....this time, I will get two treatments a day. So, it will take only 2 1/2 weeks to complete it this time instead of the 6 weeks like last summer. The doses will be smaller since I will get two a day but it will still come with the chances of side effects happening a little quicker......hair loss.....already there! Nausea, scoots, weight loss (woo-hoo)....but I didn't have nausea or the scoots last time so lets hope we leave those out this time also.
Dr. Javle assured me this was a good visit. He says even though it shows the tumor is a bit brighter, he cannot see it on the scan. He says he thinks I am still stable but wants to radiate that lil booger left that is still showing up bright (which means there is still some activity going on in a little piece of the mass).
So, although I was taken aback by the report at first, I know MD Anderson is doing what they do best, making people live longer lives at hopefully a better quality of life.
I also met another cholangiocarcinoma patient from Memphis, Tennessee today. Her name is Becky Couture and we have connected through the cholangiocarcinoma website. Her family was lovely and she also had good reports from Dr. Javle. God is GREAT!!!
I thank God for being beside me today.....for giving Pat and I such a great family to "camp with" for the past 3 days. It seems like we have known each other for years when this was the first time meeting Deb's husband. What an adventurous fun loving family! God put them on this path for me....if I get tired as I did the last time, I could hardly do much besides eat, sleep, and take care of myself. I have a feeling if we stay with them for the radiation, Deb and Erika will be mother hens to me. Yip....God knew where to lead me. I am thankful and also thankful my husband is so good at driving in this Houston traffic.....I'd have wrecked the car a million gazillion times by now.
Well......it's almost 11 and most of you know it is WAY past my bedtime. Just wanted to update and thank you all for the prayers!! Keep 'em coming!!
HUGS!
Patty Corcoran
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