Groinstrong

Hi there,

I just spent the last hour writing a detailed description of my experience with the MEK Inhibitor treatment but the internet ate it!

So here's the super brief version:

I began on a dose of 2.0 mg daily. The rash came on quickly, focusing on my face, chest and back, but also affected my nasal passages and ears. I looked like a burn victim. The rash got bad enough that my doctor ordered a 14 day hold on treatment.

To try and control the rash, I began a daily regimen of 30 mg of Prednisone steroids, which helped but has also driven me a little crazy. I also found that Clindamycin helped some with the acne underneath the rash.

I returned to the trial on a 1.5 mg daily dose, and with a 60 mg daily Prednisone the rash has stayed away. But I've had significant insomnia and some anxiety due to the steroids, and visits with my psychiatrist and counselor (and a small dose of anti-depressants and as-needed anti-anxiety medication) have helped with that.

The other major side effect I've had to deal with is significant arthritic pain in my ankles and shin splint-type pain deep down in the bones. I haven't responded to a wide range of attempts at pain management, and it has actually worsened enough that as of today I'm on another 7 day hold from treatment. I will probably return to treatment next week at an even lower dose.

Through all this, though, my first scan was extremely promising, and showed multiple tumors disappearing and significantly decreased metabolic activity.

So, considering some of the dramatically awful options for melanoma treatment, I must say that dealing with an uncomfortable rash and some lower limb pain seems a small price to pay for watching my cancer disappear.

I keep a regular blog of my progress at groinstrong.com – feel free to visit and contact me if you have any questions or would like to chat. You can respond here on the MRF board or email me at jonah.ei@gmail.com.

Good luck to all of you!

Jonah (a.k.a. Groinstrong)

Hi there,

I just spent the last hour writing a detailed description of my experience with the MEK Inhibitor treatment but the internet ate it!

So here's the super brief version:

I began on a dose of 2.0 mg daily. The rash came on quickly, focusing on my face, chest and back, but also affected my nasal passages and ears. I looked like a burn victim. The rash got bad enough that my doctor ordered a 14 day hold on treatment.

To try and control the rash, I began a daily regimen of 30 mg of Prednisone steroids, which helped but has also driven me a little crazy. I also found that Clindamycin helped some with the acne underneath the rash.

I returned to the trial on a 1.5 mg daily dose, and with a 60 mg daily Prednisone the rash has stayed away. But I've had significant insomnia and some anxiety due to the steroids, and visits with my psychiatrist and counselor (and a small dose of anti-depressants and as-needed anti-anxiety medication) have helped with that.

The other major side effect I've had to deal with is significant arthritic pain in my ankles and shin splint-type pain deep down in the bones. I haven't responded to a wide range of attempts at pain management, and it has actually worsened enough that as of today I'm on another 7 day hold from treatment. I will probably return to treatment next week at an even lower dose.

Through all this, though, my first scan was extremely promising, and showed multiple tumors disappearing and significantly decreased metabolic activity.

So, considering some of the dramatically awful options for melanoma treatment, I must say that dealing with an uncomfortable rash and some lower limb pain seems a small price to pay for watching my cancer disappear.

I keep a regular blog of my progress at groinstrong.com – feel free to visit and contact me if you have any questions or would like to chat. You can respond here on the MRF board or email me at jonah.ei@gmail.com.

Good luck to all of you!

Jonah (a.k.a. Groinstrong)