GSK1120212 Trial Experiences Wanted

My husband is on this drug as well. He is participating in a combo study which has both GSK 1120212 and BKM120.

So far, so great… 2nd month, PET scans show huge decrease in metabolic activity, and the side effects are minor…

a little bit of a rash on his face and some fatigue… has been able to decrease his pain meds significantly.

CT scan is next week so we're hoping for great results.

Good Luck.

Em

My husband is on this drug as well. He is participating in a combo study which has both GSK 1120212 and BKM120.

So far, so great… 2nd month, PET scans show huge decrease in metabolic activity, and the side effects are minor…

a little bit of a rash on his face and some fatigue… has been able to decrease his pain meds significantly.

CT scan is next week so we're hoping for great results.

Good Luck.

Em

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 [email protected].

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 [email protected].

Good luck to all of you!

Jonah (a.k.a. Groinstrong)

I have a history with Ipi, and bio-chemo, with my latest trial using Mek.  Nine months on GSK Mek inhibitor drug, since February and most of it is at 2.0 mg.  30% shrinkage, currently stable.  The rash came on hard and fast, mostly face and head, , and chest, my dermatologist came up with a great fix, Dicloxacillin 250mg, 4x a day…..  I tested B-Raf negative last year, and just had another biopsy to test again for B-Raf, Nras, Gnaq, Pi3k, Pten,C-Met.  We are very pro-active and want to have a plan B if needed.  I will add a comment for MD Anderson, I am in Tampa and go to Houston every 28 days.  We highly recomend a high end cancer center that has options with active research going on and  MDA is very active, but when you go there the first time, be educated, knowing what you want and have an understanding what is current….    Hope that helps……Brent and Sharon

I have a history with Ipi, and bio-chemo, with my latest trial using Mek.  Nine months on GSK Mek inhibitor drug, since February and most of it is at 2.0 mg.  30% shrinkage, currently stable.  The rash came on hard and fast, mostly face and head, , and chest, my dermatologist came up with a great fix, Dicloxacillin 250mg, 4x a day…..  I tested B-Raf negative last year, and just had another biopsy to test again for B-Raf, Nras, Gnaq, Pi3k, Pten,C-Met.  We are very pro-active and want to have a plan B if needed.  I will add a comment for MD Anderson, I am in Tampa and go to Houston every 28 days.  We highly recomend a high end cancer center that has options with active research going on and  MDA is very active, but when you go there the first time, be educated, knowing what you want and have an understanding what is current….    Hope that helps……Brent and Sharon

Hi everyone,
I’m new on this forum and actually I do not have a melanoma but an ovarian cancer with K-Ras mutation. Hope I can still post here. In November I started a combo trial with GSK1120212 and BKM120 at the third level of dosage in Switzerland. After 20 days I had to interrupt it due to strong skin rash and acne on my face but above all due to a G3 functional stomatitis, i.e. I couldn’t eat, talk and not even sleep as it was very painful. Now I’m doing well and again taking the two drugs but at a lower dosage of GSK.
The first screening (after one month of treatment-actually 20 days) showed a lower cellular activities and my tumor marker has dropped significantly…. It never happened with the 10 chemos I’ve done!
I’d like to ask you if you have any suggestion to lower the probability of getting back the side effects or if you found some special treatment against them, in particular against the stomatitis!
Moreover I’d just like to get in contact with someone who shares my same experiences.
Thanks and sorry if I may have posted in the wrong place!
Cris

Hi everyone,
I’m new on this forum and actually I do not have a melanoma but an ovarian cancer with K-Ras mutation. Hope I can still post here. In November I started a combo trial with GSK1120212 and BKM120 at the third level of dosage in Switzerland. After 20 days I had to interrupt it due to strong skin rash and acne on my face but above all due to a G3 functional stomatitis, i.e. I couldn’t eat, talk and not even sleep as it was very painful. Now I’m doing well and again taking the two drugs but at a lower dosage of GSK.
The first screening (after one month of treatment-actually 20 days) showed a lower cellular activities and my tumor marker has dropped significantly…. It never happened with the 10 chemos I’ve done!
I’d like to ask you if you have any suggestion to lower the probability of getting back the side effects or if you found some special treatment against them, in particular against the stomatitis!
Moreover I’d just like to get in contact with someone who shares my same experiences.
Thanks and sorry if I may have posted in the wrong place!
Cris

Which one are you going for?  Can you send me contact info?  I keep getting doors slammed in my face since I've done BRAF inhib drugs before and have brain involvement.  But aren't both of those things true of Eric as well?

Love,

Amy

Which one are you going for?  Can you send me contact info?  I keep getting doors slammed in my face since I've done BRAF inhib drugs before and have brain involvement.  But aren't both of those things true of Eric as well?

Love,

Amy