Postby miabella1 » Tue Oct 08, 2013 12:28 pm
Patti, I have been a three pills a day, three weeks on and one week off, since April, except for cycle 5 when my Onocologist suggested we try four pils a day. Before cycle five, the only side effect I was having was the loss of appetite and weight loss. I have lost near to 50lbs since starting in April, but had the extra weight to lose. During cycle five while on four pills a day I had extreme fatigue and nausea, mouth sores, the start of Hand and Foot Syndrome, as well as the loss of appetite and weight loss. Cycle 6 I returned to the three pills a day, but unfortunately all the the side effects remained with me. My mouth sores have improved to just having a tender mouth. For nausea I take Zofran, for fatigue I take naps as needed. I use Udderely Smooth Extra Care 20, twice a day for the Hand and Foot Syndrome. The side effects are annoying, but manageable and worth the results especially because I Am Signet Cell.
The scan I had before Cycle 5 showed disease progression. I could have quit Regorafenib then, but instead tried the higher dose for cycle 5. I was not able to maintain the higher dose for cycle 6, but still had significant improvement on the my last scan. It makes me wonder if the success rate for Regorafenib is susceptible to the amount of time you are on it, are doctors and patients giving up on it too soon? Things that make you go hmmm......
I started Cycle 7 yesterday, I will let you all know how well that goes at the end of the cycle.
dx 1-7-11, Stage 4 vs. Appendix, age 52
poorly diff. mucinous adenocarcinoma w/ signet ring features
Folfox, 2w/Avastin 2/11 to 7/11
Folfori w/ Cetuximab 8/11 to 3/13
Regorafenib 4/13 to 11/13
Investigating targeted therapies at MDA
Chemo for life