Christine.P

May I ask what therapy you are on? I am on Taf/Mek and have had several subcutaneous cysts form on all over. They are hard lumps that are sensitive to the touch. While my doctors suspected they were just cysts (since they were painful and cancerous tumors are not painful to the touch), they did a biopsy anyway to confirm. I started with them just on my legs, then the moved upward. I now have them on my arms, breast, legs, and the palm of my hand. This is an increasingly commonly reported side effect of Taf/Mek, but it is not yet really accounted for in the literature.

I've been on Taf/Mek for 4 months and periodically have the fever with chills but mostly have muscle and joint pain and fatigue. Some days are better than others, but the pain is there every day. Advil helps a little but doens't last. My oncologist is having me try medical marijuana to see if that helps. No one has told me that these side effects will go away, but hopefully with time, they will.

Had I not stopped responding to ipi/nivo-nivo alone, my doctor's plan was for me to stay on nivo for 2 years. Sadly, I had new tumors appear and had to move on to Taf/Mek.

I'm sorry about your husband's procrastination and denial. As a fellow stage 4 patient, I know that some days it just feels like too much and I retreat for a day or two. But then I know I have to fight and force myself to do what I'm supposed to do. I don't know if there is anything you can do or say to motivate him; just let him know you are there no matter what.

I also just wanted to mention that I am on Taf/Mek, too, for about 6 weeks. Fevers, fatigue, and sweats are all actually side effects of the medicaions. If he ever has a fever higher than 100.4, you should call your oncologist. Usually, they will have the patient stop treatment for a few days until the fevers are gone. I've been told that if you don't stop temporarily, the fevers can just get worse which means the dosage of the meds will have to be decreased. 

Best of luck to both of you. This is definitely a marathon and not a sprint. 

Congratulations on being one year cacner free! Here is a link to melanoma specialists in every state:https://www.aimatmelanoma.org/living-with-melanoma/find-a-melanoma-specialist/missouri/  Good luck!

You should ask your oncologist for a referal to an endocrinologist. I have treatment-induced hypothyroidism and have had bouts of hyperhyroid as well. My endocrinologist has my on levothyroxine and adjusts it as necessary based on my bloodwork. I haven't had any symptoms solely related to the thyroid since going on medication, but I know if you don't treat it, it can cause trouble. Good luck! 

Hi, Jubes. Do you know if he is BRAF positive? I recently failed the ipi/nivo combo followed by a year of nivo and just started the Tafinlar/Mekinist combo. It is an oral chemo you take twice daily at home. It's not a long term treatment because, as I put it in my clunky layman's terms, the tumors figure it out and it stops working. Most people get about a year of positive results, I'm told; although I met a man the other day for whom it worked for 6 years! 

I don't know if this is helpful, but I thought I would share. My heartfelt best wishes to both of you.

Thanks for the update, Bill. I hope you continue to be side-effects free and that the combo kicks melanoma's butt.

I am so very sorry, Janis. Wishing you and your family any peace you can find during this devastating time. 

Great link!