amyg_daddys-girl
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Thanks all, yes very exciting news. He feels ok for the most part. Goes for treatments every other Thursday, because of the steroids he usually feels great until about Sunday afternoon, then he crashes. No energy and doesn’t do much of anything until about Wednesday but he does have an appetite. Then he feels fine for about a week before he goes to his next treatment. Also, one of the drugs causes him to have a weird tingling feeling if he has anything cold for the first 5 days or so after treatment. He has to drink everything at room temp for those days, and even stepping on a cold tile floor feels like pins and needles, which is strange but he is now getting used to. And the last side effect of the clinical trial drug is a rash. We were told that it can get really bad and usually on the face. He has been lucky, he did get it but it’s not too bad, also has it on his back, but they gave him a cream for it and that helps him feel a lot better.
We are going on a family vacation this week, and I am going to be greatful and enjoy every moment
I am completely relating to you when you describe all your feelings. I have felt them all, and anger is a hard one. I wish you and your entire family lots of strength. I hide a lot of my tears around others, but the minute I get alone, is when I tend to fall apart. Stay strong, I know, easier said than done.
I have been going through the same thing, but only for about 6 weeks now with my father. I am already very familiar with half of the words you mentioned and feel exactly what you described. Sending prayers your way for your whole family and especially your mom!!
Unfortunately I don’t have the results or wording of the Pet Scan, that is something I don’t believe we have. That is exactly how they stated it to me and my mother. We have not planned on meeting with an interventional radiologist at this time. It’s so much info, I am feeling extremely overwhelmed, but will not give up on trying to find out everything that I can.
marions: yes we are waiting on the KRAS result for the clinical trial.
I am 30 years old with a 12 year old daughter, who goes to her grandfather’s almost everyday after school, as he has a spine disorder, and has been disabled for a few years now. Beaking this news to her was the hardest thing I’ve had to do ever. She is ok with it now, and I am hones with her when she has questions to what I feel is appropriate with her age level. It amazes me how quickly life can be totally changed in one day.
