Anyone else? Metastatic Melanoma – Mekanist+ Tafinlar+ Immunotherapy

I’m very sorry to hear about your dad’s challenges.  Reading your post, I’m wondering why the doctors are staying with BRAF-MEK.  Those medicines tend to work very quickly when they work.  Moving to PD-1 makes sense and is probably the best thing to do given your dad’s tumor burden.  If your family has access to a top melanoma center, like MD Anderson in Houston or Sloan Kettering in NY, it would make sense to get another opinion on treatment.  

I can't give you any personal expericince here.  But, here is a post (with additional links within) to reports where immunotherapy is combined with targeted therapy:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-atezo-anti-pdl1-with.html  

Some folks with liver mets have experieced improvement with various sorts of radiation to the area, but I don't know if that is actually feasible for your dad at this time.  I wish you and your dad my best.  Celeste

HI – My husband has been on Tafinlar for nearly 5 years with stable results.  He had a brain met resurface this Spring which was surgically resected and treated with gamma knife. He is now on Keytruda concurrently with Tafinlar and is scheduled for his 3 mo post surgical MRI next Monday. Fortunately, he hasn't had any disease to the liver so I can't provide any feedback on that issue.  We have worked with a palliative care doc at times to address pain issues and would highly recommend seeking a consultation.  Sending prayers for relief from the pain.  

Ann

I am a 46 year old, Stage IV BRAF positive with tumors in lung, liver and upper arm.  I was on Mek and Keytruda together for a few weeks until my tumor in arm started growing recently.  I did not have any side effects while on the Mek/Keytruda combo.  I also have not had pain from my liver mets, knock on wood.  I will be switching to the new target therapy (encorafenib/binimetinib) and continue on Keytruda next week.  I hope this combo will give good results.  This may not be helpful but your dad is not alone on this combo, they claim that combining the drugs will hopefully provide a better response over a longer time frame.  Wishing your dad healling and comfort.

I learned from this forum that the immunotherapy is working even when you do not think it is.  It's the enegizer bunny.  Also the yervoy/opdivo gave me hepatitis D for 5 months treated with prednisone, but when i had what i thought was liver pain, I put soups and food in a blender at times to take the burden off the liver.  Google liver diets like i did. I did extremely low sodium, carbs, sugar to help my blood sugar and gut in general.  It worked for me.  Sharon