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GSK1120212 Trial Experiences Wanted

Forums General Melanoma Community GSK1120212 Trial Experiences Wanted

  • Post
    EricNJill
    Participant

      We are considering this trial for my husband Eric.  I was wondering what your experiences are with this drug.  Thank you!

      We are considering this trial for my husband Eric.  I was wondering what your experiences are with this drug.  Thank you!

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    • Replies
        EricNJill
        Participant

          I guess it's MEK Inhibitor trial?  I'm not sure what that means.

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            Wife of Carl
            Participant

              My husband is on this trial.  He started in May.  All of his tumors have shrunk.  MEK is similar to a B-RAF trial.  My husband has a B-RAF mutation, but his doctor said that he has seen people respond to this drug even without a B-RAF mutation.  He has some patients that have been on the drug for over a year and are still responding.  My husband does have some side effects, but they are managable and he continues to do most of the things that he wants to.  He goes back for scans next week, we are ofcourse hoping that he will have good scans. 

              Deciding on a treatment option is always difficult, never knowing which is the correct decision.  Good luck with your decision.

              Pat-Wife of Carl

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              Wife of Carl
              Participant

                My husband is on this trial.  He started in May.  All of his tumors have shrunk.  MEK is similar to a B-RAF trial.  My husband has a B-RAF mutation, but his doctor said that he has seen people respond to this drug even without a B-RAF mutation.  He has some patients that have been on the drug for over a year and are still responding.  My husband does have some side effects, but they are managable and he continues to do most of the things that he wants to.  He goes back for scans next week, we are ofcourse hoping that he will have good scans. 

                Deciding on a treatment option is always difficult, never knowing which is the correct decision.  Good luck with your decision.

                Pat-Wife of Carl

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              EricNJill
              Participant

                I guess it's MEK Inhibitor trial?  I'm not sure what that means.

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                emilypen
                Participant

                  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

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                  emilypen
                  Participant

                    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

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                      Lgrodner
                      Participant
                        My husband began these drugs 8 days ago. He is experiencing nausea (started today), vertigo, blurry vision, and numbness in fingertips. He has also been irritable and blood pressure is higher than normal. Is anyone experiencing side effects. He is in a phase 1 clinical trial with both meds.

                        Linda

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                        Lgrodner
                        Participant
                          My husband began these drugs 8 days ago. He is experiencing nausea (started today), vertigo, blurry vision, and numbness in fingertips. He has also been irritable and blood pressure is higher than normal. Is anyone experiencing side effects. He is in a phase 1 clinical trial with both meds.

                          Linda

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                          cbenedet
                          Participant

                            Hi Linda,

                            I'm at the beginning of the fourth month of trial with both drugs, BKM120 and GSK1120212. In my first month I experienced "only" skin rash and a very strong stomatitis. Due to that I had to interrupt the drugs for 14 days and start again at a lower dosage. Anyway at the end of the second month the scans looked very promising: the metabolic activity couldn't be detected and the tumor marker was below its threshold value! These results have just been confirm by new scans! So hold on and good luck

                            Best,

                            Cris

                             

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                            cbenedet
                            Participant

                              Hi Linda,

                              I'm at the beginning of the fourth month of trial with both drugs, BKM120 and GSK1120212. In my first month I experienced "only" skin rash and a very strong stomatitis. Due to that I had to interrupt the drugs for 14 days and start again at a lower dosage. Anyway at the end of the second month the scans looked very promising: the metabolic activity couldn't be detected and the tumor marker was below its threshold value! These results have just been confirm by new scans! So hold on and good luck

                              Best,

                              Cris

                               

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                              Amy Busby
                              Participant

                                Can you send me some info on which trial ya'll are doing?  I am trying to rustle up some options.

                                [email protected]

                                Amy

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                                Amy Busby
                                Participant

                                  Can you send me some info on which trial ya'll are doing?  I am trying to rustle up some options.

                                  [email protected]

                                  Amy

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                                Groinstrong
                                Participant

                                  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)

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                                  Groinstrong
                                  Participant

                                    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)

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                                    sharmon
                                    Participant

                                      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

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                                        EricNJill
                                        Participant

                                          Thank you all for your replies.  As it turned out we discovered that Eric had a 3CM Brain Tumor a week before we were supposed to start the trial.  Unfortunately, that eliminates his chances of starting the trial.  He'll have to be 2 months free of brain scans before he get on another trial.

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                                          EricNJill
                                          Participant

                                            Thank you all for your replies.  As it turned out we discovered that Eric had a 3CM Brain Tumor a week before we were supposed to start the trial.  Unfortunately, that eliminates his chances of starting the trial.  He'll have to be 2 months free of brain scans before he get on another trial.

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                                          sharmon
                                          Participant

                                            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

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                                            cbenedet
                                            Participant
                                              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

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                                              cbenedet
                                              Participant
                                                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

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                                                Amy Busby
                                                Participant

                                                  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

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                                                  Amy Busby
                                                  Participant

                                                    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

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