Hi. I have not been on here for a while. I have been on and off of the Braftovi/Mektovi combination since early July. I have had several adverse reactions – fever, rash, nausea, vomiting. It was determined that the Braftovi was causing it for me. The dose was decreased several times, but I was unable to tolerate even the lowest dose. I have been on Mektovi alone for several weeks and doing okay with that. I had recent scans that showed tumors shrinking in my brain, liver, and lung, as well as no new tumors. The visible tumors on my neck – some are smaller and some are larger, not sure why they did not respond as well. My oncologist wants to keep me on Mektovi alone for now and do scans again in 2 months. There is concern that it may not be helping my bone mets, as I have started having pain in my hips and ribs. The oncologist told me they could do radiation treatments to certain areas for pain relief, but I’m not ready to sign up for that yet. I did not have a great experience with neck radiation last year, so I’m apprehensive about radiation.
If this his treatment does not continue to work, I will either be looking at chemotherapy or a clinical trial somewhere.
I am stage 4 with primary scalp, mets in liver, brain, lung, and bones. I started this in 2014 and have been battling metastasis since mid 2017
Keep fighting, Joy
