EllieS

Best to you… Our fingers are crossed!

Best to you… Our fingers are crossed!

I got terrible joint pain after starting target therapy (tafinlar /mekinist). I felt like someone literally took a sledge hammer to my hands and knees,. My oncologist prescribed 2..5 mg of prednisone.. No more pain, a miracle. So it could be old age or a side effect of target therapy..

I got terrible joint pain after starting target therapy (tafinlar /mekinist). I felt like someone literally took a sledge hammer to my hands and knees,. My oncologist prescribed 2..5 mg of pregnisone.. No more pain, a miracle. So it could be old age or a side effect of target therapy..

I got terrible joint pain after starting target therapy (tafinlar /mekinist). I felt like someone literally took a sledge hammer to my hands and knees,. My oncologist prescribed 2..5 mg of pregnisone.. No more pain, a miracle. So it could be old age or a side effect of target therapy..

Is your mum BRAF positive? I had disease progression after Yervoy and Opdivo. Because I am BRAF positive the next step was BRAF target therapy, Tafinlar /Mekinist. I have been NED on this combo for two years! Good luck to you and your mom!

Hope there is no reoccurrence. Is your mum BRAF positive? I had disease progression after Yervoy and Opdivo. Because I am BRAF positive the next step was BRAF target therapy, Tafinlar /Mekinist. I have been NED on this combo for two years! Good luck to you and your mom!

Good luck with your new treatment! I have been NED on Tafinlar and Mekinist , Braf drugs, for almost 2 years. My first scan, maybe 3 months after starting showed significant improvement and by the second scan I was NED and have been ever since. I am on 2.5 mg Predisone for side effects, joint pain. Every one in a while if i forget the predisone I run into trouble, extreme fatigue and fevers. So be good about taking the predisone!!! Best wishes to you!!

WOW seven year, I m so happy for you Judy and Gene!!!!!
Personally, I know that a low dose of prednisone is a game changer and miracle drug.

Sorry to hear about your diagnosis.
I encourage you to ask if your tissues was sent for genetic testing, especially for BRAF mutation. It would be very helpful information for future treatment options.
Will you be following up with an oncologist who specializes in melanoma? The protocols are changing fast.
Sending light your way,
Ellie

Ellie S

My skin melanoma was in 1989. In 2013 a mass of metastatic melanoma was discovered in my lower abdominal during a routine pelvic exam. 2013-2014I have has 3 abdominal surgeries, 2016, 3 rounds of IL2, yervoy, opdivo… disease progression. Been on Tafinlar and Mekinist since 2017, NED scans since December 21017….. I get fevers relatively often and need to be on prednisone to control join pain.. I know people stay on this combo until there is diespase progression or unmanageable side effects.
QUESTION: does anyone know of studies or info of If/ when one can get off of Tafinlar/Mekinist? I am grateful that it is working for me, but. tire of being tired and needing steroids.

My skin melanoma was in 1989. In 2013 a mass of metastatic melanoma was discovered in my lower abdominal during a routine pelvic exam. 2013-2014I have has 3 abdominal surgeries, 2016, 3 rounds of IL2, yervoy, opdivo… disease progression. Been on Tafinlar and Mekinist since 2017, NED scans since December 21017….. I get fevers relatively often and need to be on prednisone to control join pain.. I know people stay on this combo until there is diespase progression or unmanageable side effects.
QUESTION: does anyone know of studies or info of If/ when one can get off of Tafinlar/Mekinist? I am grateful that it is working for me, but. tire of being tired and needing steroids.

Dr Omid Hamid? I met him at a melanoma symposium…. you will be in good hands. Best to you! Please keep us posted

Dr Omid Hamid? I met him at a melanoma symposium…. you will be in good hands. Best to you! Please keep us posted

Sometimes treatments cause weird skin issues. Sometime the weird skin issues may even indicate a possibility the treatments are working. So hopefully you have gotten your report and have had a discussion with the dermatologist an hopefully the pathologist and dermatologist know about us melanoma patients.
I have a few weird skin issues, so I know how, annoying and scary this is.
I have had 3 abdominal surgeries for metastatic melanoma (24 years after my initial skin melanoma), 4 cycles of IL2, 4 Yervoy infusions, can’t not remember how many Opdivo infusions and had disease progression. I am grateful that I the BRAF mutation and have been on Tafinlar and Mekinist for two years AND have been NED for the past year and a half, and a number of skin issues.
Best to all of us.