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Mar 29, 2018 08:16PM
Mike3121, I'm sorry your wife's treatment is not going as well as all would have liked. I looked up SUV in the abbreviations and couldn't find it.
AlabamaAustria and SoniaL, I think the clinical trial with Keytruda is for TNBC plus BRAC1, but you'll need to check. I have a facebook friend who is TNBC and we are about at the same place. She was going to take Xeloda and then got into the Keytruda trial, she is BRCA1. Go to breastcancertrials.org and see about clinical trials.
Rebekah, you have not started Xeloda yet, I finished 8 cycles on Feb 23, 2018. Don't do what I did:
Let me tell you about the big mistake I made in the first 3 cycles of Xeloda. I had no symptoms. I continued to walk for exercise and recreation for the first 3 cycles. I think all that walking made it so on later cycles, I got really bad Hand and Food Syndrome. I didn't get enough instruction about NOT walking for any exercise or other than the things I would do normally. I have had to stop taking xeloda at least 3 times. One time was 16 days instead of 7 another was 14 and another as 15. But I have had severe symptoms of HF Syndrome. Red feet, some peeling (not bad) but very sensitive feet that change to pain after a certain amount of time. I have not been able to even take yoga for 3 or 4 months. I'm a month off Xeloda, and although I'm getting improvement, I have not recovered yet. My feet still hurt. I have been usually good until 2 miles (throughout the day --- that is just walking around the house - which is very small but walking from car to appointments, grocery shopping etc. ) I did 8 cycles, 2 weeks on and 1 week off.
I was using UREA 40% during Xeloda, but stopped putting it on when I first found some improvement after Xeloda. Now I'm starting to do it again, because I think UREA 40% helps a lot more than body lotion.
(I got UREA40% off of Amazon --- look at the ingredients and pick one without parabens. https://www.amazon.com/Percent-Cream-Hands-Elbows-...=sr_1_2_a_it?ie=UTF8&qid=1522368365&sr=8-2&keywords=urea+40
This is the one without parabens I bought. Originally I bought the one that comes up first but it turned out to have parabens in it.
We just took a 3 day spring break in Baltimore Inner Harbor, which I thought would be not so much walking because everything is in the same area, but day 1, I walked 4.5 miles and that was too much. Day 2, I walked 3.4 miles (iphone tells me). I am was really hurting. Day 3, not so much, I'm letting my feet heal.
So just a caution to stop doing things early on so you don't get to where I am with my feet. Doctor said my severe symptoms should go away in a month (that is about 10 days ago). I think I just have to stop walking and I'm so done with that. I guess the 2 miles I walk on a normal day is not helping me heal. My hands are much better (not totally), but the feet have only gotten a little better.
10/31/2016, IDC, Right, 4cm, Stage IIB, Grade 2, ER-/PR-, HER2-
11/28/2016 AC + T (Taxol)
4/26/2017 Lymph node removal: Right; Mastectomy: Right