SCCA

imageHere we are at the top of the space needle. It was cool. When we went up early it was not so busy.Later, as we left it was so packed, so I’m glad we did it early especially after Dr. Cafey says if I’m neutropenic avoid crowds. Kinda freaked me out a bit.

So, SCCA , Seattle cancer center alliance. Wow, it is very big, overwhelming, and lots of very chemoed out people. I was definetly not liking being there. Somehow when you’re not on regular IVs or getting weekly treatments it’s easier to ‘forget’ that you are a cancer patient. At least I do. I’ve never been a gung-ho, I’m going to attack this with everything, I’ve just done what’s necessary and moved on.

So, Dr. Caffey, is probably young enough to be our kid, but very informed and took his time asking questions. The jist of it all is just keep doing pomalyst, then when that is not working, move to the other line of chemo that’s the Velcade and krypolis.  Also, unfortunately my BMB did have any genetics and so next time he asked to do that. It’s really too bad with the outrageously expensive ( co pay) we have we it wasn’t in the screening. Bummer.

All in all I am confident that my doctor is right on( I was anyway), but now it’s reassuring.

even at this point, he said I’ve barely begun to use what’s available, so that was kinda reassuring too.

Unfortunately, no clinical trials unless I live there. And he said if I did he would put me in one. Also, I’m not technically a patient of his as I don’t live there. So that was kinda weird, since I thought this was the idea, to bounce things off him.

I think my next plan in maybe six months or a year. Depending on how things go, I’ll check out going to Stanford or UCSF.

regardless, we both felt very pleased with the consultation, and hey, I got to mark Seattle off my bucket list.

💫✨🌟😀

2 thoughts on “SCCA

  1. Yay! That sounds like some positive news. I guess he doesn’t consider you his patient because this was a second opinion situation. Seattle sounds awesome. Have a safe trip home.

  2. Yes, you’re right! He asked us whether we were moving there. No, so I guess since this was my first time with a second opinion that’s what happens. He did say I could call and do a follow up some time down the road but I’m guessing that would mean flying up there again. He was definetly in the know about things all myeloma, as that’s all he does , with some lymphoma thrown in..
    It was a really fun trip and I’m amazed I wasn’t overly tired. Tired but not dragging.

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