swalters1038

I got approved for pre approval access to opdivo relatlimib combo after failing opdivo yervoy.

Similar diagnosis and surgery…..I had radiation and then went on Tafinlar and mekinist versus the immunotherapy.

I was on the combo for a year and did not have your experience. I had the fever and chills, but they would subside after stopping the pills for a couple days. The fever/chills were somehwat cyclical in my expereince as I would get them every 6-8 weeks.. I would discuss the smaller treatment and/or trying the Braftove/mektovi combo with your oncologist.

I was on the Taf/Mek combo for a year. Initially I was told to push through the fever/chills episode, but in the later half was instructed to stop taking the tafinalr until the symptoms subsided. I would typically be off the drugs for 2-3 days. Studies have shown that the pause in medication does not impact the response or surivivablity. Do your self a favor and as soon as you feel the onset of the symptoms stop taking them. I also found the the fever/chills were not as prevalent in the last 6 months of taking the drugs, but my energy levels were also much lower.

Cheers
Steven

My schedule for scans are typically quarterly for Ct scans and yearly for the Brain MRI. I will likely starting making the transition to every 6 months this coming year. I’m not as big of a stickler on schedules though as I regularly push things off if I feel like it. I think my next scan is actually 5 months from the one before. MY oncologist really lets me dictate my own treatment plan.

I was on the combo for a year and regularly had fatigue and just pushed through. I found trying some minimal physical activity helped me in the long run but, never really resolved the fatigue issue. From the fever and chills standpoint, They were debilitating at some points, but was finally told half way through treatment to quit the tafinlar to resolve the issue. I would typically quit for 2-3 days which would recoslve the issue. The fevers and chills tended to be cyclic for hitting every 5-6 weeks.

After consulting with my doctor after radiation, he suggested waiting as the head/neck area would be inflamed and the CT would likely not show much. I however had a CT with contrast right before surgery (head to toe) and started radiation 2 weeks after surgery.

I’m guessing radiation therapy is the next step, atleast it was for me after a similar surgery. My radiation oncologist and surgeon indicated that in the head neck region it can be difficult to get sufficient margins and radiation would reduce the chance of local reoccurence. They likely should test the tumor for the BRAF mutation before determining the next step on the immunotherpay or BRAF/MEK therapy.

I’m guessing radiation therapy is the next step, atleast it was for me after a similar surgery. My radiation oncologist and surgeon indicated that in the head neck region it can be difficult to get sufficient margins and radiation would reduce the chance of local reoccurence. They likely should test the tumor for the BRAF mutation before determining the next step on the immunotherpay or BRAF/MEK therapy.

My experience would be very similar to this.

I should also note that I more or less have complete control of my own care. IF i feel like getting a scan(except for PET scan) or getting blood work done my oncologist works with me to get them done. IF i don’t feel like getting them done then I don’t and my oncologist lets me be. I spent alot of time on this board and researching standards of care for melanoma and its location. For me the mental/emotional side of my cancer battle has been the most difficult, so at least feeling like I am in control and have the ultimate say in my care helps me mentally. Best wishes….I actually have scans next week after pushing them off a month for a long overdue vacation. First post-treatment scans after completing a year of Tafinlar and Mekinist, the anxiety over the past few weeks has been exhausting.

I finished radiation in the middle of august 2018 and subsequently had a PET Scan in October 2018. This scan was not scheduled but was due to elevated LDH levels. My normal scan schedule was for a Brain MRI and CT w/contrast in December. I have been on quarterly CT Scans ever since.

I had similar treatment as Edwin. I had some throat issues for a week after treatment but no long term side effects. My oncologist was pretty clear that the treatment was solely for the prevention of localized re-occurence and would have zero impact on long term survivability. He let me know that a second surgery in the head neck area is highly unlikely.

I’m with Ted on this one. My treatment was determined by a team of doctors.

I also then had radiation treatment after the surgery.