HI, all. I had good results with Stivarga. My onc says I"m his only patient who seems to have done well on the drug. My CEA dropped from 500 to 90 after three months of taking it. But my scans showed mixed results, some growth and some shrinkage. I was supposed to be dead by Christmas... and I"m not. So I would say that's a positive result. I took three pills a day for three weeks and then a week break. right now I"m off the drug because I'm in a clinical trial.
in my first month of taking it, I got a massive full body rash. Really freaked me out. This was determined to be a "drug rash" caused by Stivarga - by onc and a dermatologist. Onc says the rash is a good thing, and indicates a good response. Someone else in this thread also reported getting a rash - would appreciate some follow up info in case Stivarga also gave her good results. After a couple of weeks the rash went away. I take my pills every day around 8, and now, I get this strange temporary rash and skin flush every day in the afternoons around 2 or 3. Usually on my face and chest and it goes away in an hour or so. The area around my eyes is always white and not affected. I look like a raccoon.
I did get "hand and foot", a/k/a chemical burns, kicked in around month three? that is such a joy. I took Xeloda for nearly a year and never got it, although Xeloda really didn't work for me. I'm still mapping out the HF cycle, seems the first week burns and I can't function at all. Once the blisters crust over (around day 7) hand functionality is restored and there is little to no pain. It affects the balls of my feet but they don't hurt as much as my hands so I can actually walk. Well, shuffle. same with hands, once I Have hard blisters, I can walk as normal and am no longer shuffling. The whole cycle lasts a month - a week of burning and shuffling, and 2-3 weeks of reduced to full functionality. Ideally, you get all of your blistering at the same time - both feet are on the same cycle. Last cycle, one foot got it and the other lagged behind, so one foot was healed and I could walk and the other was still sensitive! To treat them, I used a combination of udder cream and aloe vera juice/gel. No lie! Whole foods sells AV juice as laxative, I think. The lotions with AV all had alcohol in them, which is a drying agent and an irritant so that would be the worst thing for HFS. The laxative had aloe vera gel and a little bit of citric acid. So at first I'd pour it in a pan and soak my hands in it, or smear it on my hands and put on gloves. The udder cream did more or less the same thing but when it got really bad, the aloe vera juice gel was the best. You're not supposed to take hot baths when you have HFS, but it's wintertime and I was always cold so to heck with it; I bathed with my feet on the all and my hands in the air. I guess the steam from the tub was bad, but you know? Small price to pay for a creature comfort in the cold of winter! After the blisters harden, they peel off; I have to use nail scissors to cut off the flaps of skin. Very disgusting and gross but I do it. Then, the burning starts all over again. Argh. But... it lasts about seven days and the blisters harden again, and stop hurting. It's cyclical.
Other side effects - I was always strangely cold, my blood pressure was elevated, and my mouth had this weird thrushy type problem which wasn't thrush. Other people in this thread reported this same side effect. My tongue would get blistery things on the sides, which would make tongue wider. So I"d accidentally bite it. Wow! It was like pressing a hole punch into my tongue. OMG. and I had the same reaction to spicy food and toothpaste as well. very very sensitive.
Three weeks after Stivarga, all of the above side effects are gone and all is well.
Not my favorite chemo drugs, but as long as the side effects are not permanent (which they seem not to be), I will tolerate it. Beats being dead!
RT, 4 liv, 5 lung
2/13 Xeloda 4k mg/d
7/13 DC VAX,1k mg/d metro Xel
11/13 Erbi, Irino
6/14 clinical trial lirilumab, nivolumab
1/15 clinical trial immunotherapy (young TILs)
RT, mets to liv, lung, adrenal, lns