Topic: Kel's last PET wasn't good, she's not continuing tx...
KelLewis, my sister has decided not to continue treatment. I noticed she hadn't updated for a while, so I thought I'd give a summary (not near as entertaining as her writings...but I'll try my best).
Although the Gemzar seemed to work the best at keeping the cancer from spreading or at least slowing it down, she couldn't keep her platelets up while under treatment. The last time she had it they gave her 3 units of platelets and none of them stuck - in fact her count was LOWER afterwards. So the ONC said no more Gemzar. Then she did about 8 weeks of Rituxan which they used to treat her for ITP to try and get her platelets up. They actually climbed slowly up in the 40's and then later into the 50's - she's now around 57 and holding which for her is amazing.
After no chemo for 3 mos she decided to try something new but after only two treatments she decided that she just couldn't continue. Out of 14 days, she was down for the count 10 of those days. She was so wiped out, and with little memory of the days. The latest PET Scan showed excessive cancer in the liver, in a "milky way" sort of sprayed pattern, with heavy lymph node involvement with some measuring +/- 5.3cm. There was also some in the area outside of the liver in the gutter area.
So now the goal is to try and keep her with us and comfortable for as long as possible. She has a lot of trouble sleeping, and takes Ativan to help with that. They gave her a morphine patch but it didn't help with the pain AT ALL. So she went back to the Vicodin which helps take the edge off. Most of the pain is in her upper right quadrant, front and back.
Nearly 4 years ago they gave her 6 - 12 mos...NEARLY four years ago! She has fought such a brave and strong fight. Trying everything possible to stay here just a little longer. I am so much in awe of her daily fight and struggle just to live! It's exhausting just to watch so I can't imagine how she does this EVERY day.
Our family is very close, and we support her and her decision 100% - it's her life and her choice. I took her away to Monterey this past weekend to give her a good sunshine break. We got the ONC to get her a wheelchair and as much as she hated the idea, she realized it sure made it easier to get around! Now we're back home. She was in extreme pain yesterday and she's been sleeping for the past 24 hours..unaided by drugs. When she wakes she seems really disoriented. I'm really worried. The ONC wouldn't really give us a "window of time" so we're clueless as to how fast or slow things will go. She was so full of life this weekend (albeit on steroids still), how could she deteriorate so fast? I'm not sure what to do, or when to call her doc or take her to ER. Any help, suggestions or educated guesses would be great! We all love her so much and just want to help make her comfortable and give her as much love and happiness for as long as we can. Geez, she's only 45! CC really sucks!
Thanks for listening...this has been such a bad ride...