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Latest CT / MRI stable, testing for BRAF

dearfoam's picture
dearfoam
Posts: 82
Joined: Apr 2011

SO we went for dad's CT on Monday last week, and got the report that afternoon. Dr said only a couple tumors (spleen and by colon) had minimally grown, but not the more worrisome ones in the lungs. He has finished 4 rounds on Temodar (3 weeks on/ 1 off) since May. Dr ordered test for BRAF gene variation in his melanoma, and an MRI of the brain last Wednesday, which we get the official report this week. We saw my dad's geriatric dr Friday who said we should get a "good report" on the MRI (he isn't the oncologist but reads the same report obviously).

SO this Wednesday, maybe we will have the BRAF info back, and know if dad can go on the new Zelboraf drug for metastatic melanoma. Of course he will have to get patient assistance to afford it, so many fingers are crossed. We are waiting on stars to align, I suppose.

Im still approaching this neutral but good news with much trepidation. He is balanced on his many meds right now and feeling the best he has since this whole mess started in March. I guess I am stuck in the rut that this will not last, since every time I let my guard down, we get shocked with some crazy thing.

I am overly cautious with what he does at home. Paranoid, really. I get to go to the store and do things without supervising his every move, then I come in an he is doing something ridiculous, like weilding a knife to cut a tomato in his shaky, thin skinned hand in mid air, barefoot. Hello, you are on blood thinners! No knives! And using random dirty utensils to get things out of jars. It grosses me out because he was never good about cleanliness, and now those neurons just don't fire. He wants to show off and be semi independent, but I feel like I have to put a lot of limits on what he can do.

I need to find some safe things for him to do at home besides folding towels so he will feel useful and just be more occupied. He does read more now, and still enjoys netflix, but he is a workaholic/ eccentric bachelor at heart.

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

DF, you made me laugh with the knife episode. A few mornings ago Mom's hands were too shaky to take liquid medicine from a spoon, but an hour later she wanted to pull machine staples out of a discarded piece of window treatment with a screwdriver and knife. I had to hide them!

I know what you mean about useful projects -- Mom has to have one every day. She used to love cooking, but now nausea takes the fun out of it lots of times. She has enjoyed going through her things with me, and giving some things away. She also reads a lot more than she ever did before!

dearfoam's picture
dearfoam
Posts: 82
Joined: Apr 2011

I remember my husband and I woke up EARLY one morning several months ago (before treatments had begun) and dad was trying to take his dog for a walk down the block in his underwear. Thank god we have a front door that is hard to open!!!

dearfoam's picture
dearfoam
Posts: 82
Joined: Apr 2011

Two brain tumors have SHRUNK! One almost by half, and by a third!

Still waiting on BRAF results so will go back on Temodar for another round...

A good day!

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