Sorry for the 2 post meltdown and then radio silence. I lucked out this time and my doc found me a new trial to go on. I’m taking 2 oral drugs, Tamoxifen (again) and Vorinostat, and I get an infusion of an immunotherapy drug every 3 weeks.
So far, so good. I actually feel fairly normal on this drug and there are only minor side effects. My platelets are low so my legs look like I’ve been in some sort of crazy fight and there’s maybe a little fatigue, but it’s hard to tell with the number of hours I’ve been working recently.
The worst side effect from these drugs so far is my messed up taste buds or “Chemo Mouth” as some people call it. A few weeks ago I was having the problem that everything I ate tasted like metal and now everything tastes like salt. EVERYTHING! Sweet things are actually sort of worse than foods that should have salt in them. It’s to the point that I don’t even want to eat b/c everything tastes so nasty, but I know that I have to.
I got some great tips from fellow cancer buddies in the Twitter universe, but not many of them have helped me so far.
For the metallic taste, I stayed away from red meats, used plastic cutlery, and ate a lot of pineapple, which surprisingly still tastes ok. This salty problem just hit me on Christmas day. I did what all self respecting Jews do on Christmas, ordered Chinese food, and got 1/2 way through some soup when I realized that all I could taste was salt. I’ve also apparently lost the tastebuds for sour/tart things because I drank a whole glass of cranberry juice and it just tasted like water. I have been told to try putting lemon juice on foods, but it hasn’t really helped me yet.
I will let you know if anything actually works for me so that I can try to help others in similar situations. For now I just need to get through the struggle of eating. It’s sad that food used to be my favorite thing. I love to cook and try new things and just eat in general. Now I’m in need of the calories and nutrients and I can’t force things down. Fucking cancer… ruining everything I like about life once again!
Love and Kisses,