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Well, this melanoma thing sure has it’s ups and downs. ~15 months ago, things were looking down, as I’d finished the combo treatment without effect. Then I got a surprise positive scan where most of the lung lesions disappeared, and all were gone in the scan after that. Couple of good scans after that, where maybe things would pop up, but then shrink or disappear in the next one. Nothing that looked obviously like melanoma. My last scan something in my esophagus, which had been present before, looked more menacing, and they scheduled an endoscopy. Between the scan and the endoscopy, something popped up in my mouth near the tonsils, and I started getting abdominal pain. Biopsies of the mouth, esophagus and another PET scan reveal that I now have melanoma in my mouth (PA said I was the second case of that that she’d had in 11 years), two in esophagus, bowel, nearby lymph node (so kind of the entire GI tract), and the left lung for good measure. Very discouraging, since things seemed really positive a couple of months ago, but such is melanoma. Oh well … on to BRAF/MEK (fingers crossed and question in the next thread). Thx.
I saw the headline and had to read this. I won’t rehash my own story, but I’m with you on the unexpected ups and downs. This seemed relatively easy to navigate in 2017 when starting the journey at 3B. It seems things have gotten much more complicated all around both with new options (yea!) and being S4 and exhausting (or not) the go-to treatments (boo!). And there just aren’t enough answers about progression after response. Or response after progression after response.
I like your attitude and try to adopt it. It’s like, at a certain point, you have to accept the individualized responses to these drugs ultimately can mean you can’t know where your next options are going to be until you get there.
Which is hard for those of us who are always thinking too far ahead. Good luck with the Targeted Therapy!
I m a believer in vegan diet. I started not eating meat or fish since this diagnosis. My disease was staying still close to the original site so far.
I will know new PET results on Wednesday!
I was recently on a vacation and had violated my diet with some fish here and there. My guts felt different. I had even had some abdominal pain. I stopped eating fish when I came back and my gut feels normal again. I used to praise myself for being able to digest rocks when I was younger. Not anymore. My guts are extremely sensitive to meat. It’s like I fill myself with something which is not supposed to be there. Not sure how else to describe it.
I know it’s hard not to eat what you like. I actually enjoy meat and fish a lot but got used to making and eating cottage cheese, beans, fruits and veggies. I can definitely feel the difference.
I m glad you have this targeted therapy option still available for you.
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