First week of brf113220 trial
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First week of brf113220 trial

› Forums › General Melanoma Community › First week of brf113220 trial

  • Post
    • January 28, 2012 at 2:16 pm
    chermes55
    Participant
    Hi everyone. This is my first post. I was diagnosed stage 3c in march of 2011 with 31/35 nodes in my right neck area positive. I underwent a radical neck dissection. 6wks of radiation to the head and neck and then began my interferon infusion. I knew it would be a tough year but had no idea how bad this drug would be. I started the interferon/lexapro in august and by November my girlfriend of three yrs could not take the mood swings/lack of desire any longer. She left me and have not been able to reconcile since.

    Hi everyone. This is my first post. I was diagnosed stage 3c in march of 2011 with 31/35 nodes in my right neck area positive. I underwent a radical neck dissection. 6wks of radiation to the head and neck and then began my interferon infusion. I knew it would be a tough year but had no idea how bad this drug would be. I started the interferon/lexapro in august and by November my girlfriend of three yrs could not take the mood swings/lack of desire any longer. She left me and have not been able to reconcile since. A week before Christmas I got the news that there were two new metastasis on my liver seen in my early Dec. Pet scan. My oncologist decided at that time to take me off the interferon. She then prescribed me zelboraf. Before my insurance would approve it I was offered the chance to join a trial at moffitt cancer center in Tampa with Dr Jeffrey weber. The trial is for gsk’s alternative to zelboraf (braf inhibitor gsk2118436) in combo with a mek inhibitor gsk2110212. I started my meds on 1/25/12 and on my fourth day. The only problem I have had so far is dealing with the fasting twice a day for 4 hrs each time. I decided to take my pills at 10:30 so from 8:30 to 12:30 I cannot eat. Slowly deciding that this might be the best time most days. I will try to keep my side effects and result updated. This drug combo has been having great results compared to zelboraf alone including decreased side effects. We will see in the weeks and months following.

Viewing 11 reply threads
  • Replies
      • January 28, 2012 at 2:23 pm
      Laurie from maine
      Participant

      hi

      Good luck.  That trial sounds very promising.  I am a BRAF dropout due to reoccurence and had wondered if I would have lasted longer with it if I had the MEK at same time.  I am glad youare figuring out time frame for eating that works best for you.

      keep us posted – good luck

      laurie from maine

      • January 28, 2012 at 2:23 pm
      Laurie from maine
      Participant

      hi

      Good luck.  That trial sounds very promising.  I am a BRAF dropout due to reoccurence and had wondered if I would have lasted longer with it if I had the MEK at same time.  I am glad youare figuring out time frame for eating that works best for you.

      keep us posted – good luck

      laurie from maine

      • January 28, 2012 at 2:23 pm
      Laurie from maine
      Participant

      hi

      Good luck.  That trial sounds very promising.  I am a BRAF dropout due to reoccurence and had wondered if I would have lasted longer with it if I had the MEK at same time.  I am glad youare figuring out time frame for eating that works best for you.

      keep us posted – good luck

      laurie from maine

      • January 28, 2012 at 4:14 pm
      Harry in Fair Oaks
      Participant

      Hi,

      I have been on the same trial since last May (I'm seen at the Angeles Clinic in L.A.).  What dosage of MEK are you taking along with the BRAF?  I take the drugs at similar times to you – 10 AM and 10 PM.  It becomes an easy routine after a while.

      As far as side effects, fatigue is the only lasting one I have.  There were fevers, chills and joint aches around weeks 4-6, but those have gone away.  And the most important thing:  my soft tissue mets have disappeared, the bone mets all look smaller or stable, and nothing new has appeared!

      Best wishes,

      Harry

      • January 28, 2012 at 4:14 pm
      Harry in Fair Oaks
      Participant

      Hi,

      I have been on the same trial since last May (I'm seen at the Angeles Clinic in L.A.).  What dosage of MEK are you taking along with the BRAF?  I take the drugs at similar times to you – 10 AM and 10 PM.  It becomes an easy routine after a while.

      As far as side effects, fatigue is the only lasting one I have.  There were fevers, chills and joint aches around weeks 4-6, but those have gone away.  And the most important thing:  my soft tissue mets have disappeared, the bone mets all look smaller or stable, and nothing new has appeared!

      Best wishes,

      Harry

        • January 28, 2012 at 4:19 pm
        chermes55
        Participant

        good to hear its working Harry! iam on the 75mg braf and 2mg mek. its good to hear about the minimal side effects you have had. after the destruction that interferon had on my life and relationship with only 5 mos. NED it is very good news.

        Cliff

        • January 28, 2012 at 4:19 pm
        chermes55
        Participant

        good to hear its working Harry! iam on the 75mg braf and 2mg mek. its good to hear about the minimal side effects you have had. after the destruction that interferon had on my life and relationship with only 5 mos. NED it is very good news.

        Cliff

        • January 28, 2012 at 4:27 pm
        Harry in Fair Oaks
        Participant

        Hi Cliff,

        So you are on the same dosages as me.  A bit confused on your fasting – on this protocol I fast for 1 hour before the drugs, and 2 hours after.  So a total of 3 hours no food AM and PM.  If they changed this nobody told me!

        – Harry

        • January 28, 2012 at 4:27 pm
        Harry in Fair Oaks
        Participant

        Hi Cliff,

        So you are on the same dosages as me.  A bit confused on your fasting – on this protocol I fast for 1 hour before the drugs, and 2 hours after.  So a total of 3 hours no food AM and PM.  If they changed this nobody told me!

        – Harry

        • January 28, 2012 at 4:32 pm
        chermes55
        Participant

        ya thats what i had read. not sure why my docs said 2 pre 2 post but i verified it and thats how they want me to do it. one of the study supervisors told me that if i took it right when i woke up i would only have to wait 1 hr post. very confusing to me. they also told me only water during those 4 hrs. not sure if that just means clear liqs or just water. 8-12 is a rough time without coffee. i am trying to keep a running list of q's for my dr on my 1 wk visit.

        Cliff

        • January 28, 2012 at 4:32 pm
        chermes55
        Participant

        ya thats what i had read. not sure why my docs said 2 pre 2 post but i verified it and thats how they want me to do it. one of the study supervisors told me that if i took it right when i woke up i would only have to wait 1 hr post. very confusing to me. they also told me only water during those 4 hrs. not sure if that just means clear liqs or just water. 8-12 is a rough time without coffee. i am trying to keep a running list of q's for my dr on my 1 wk visit.

        Cliff

        • January 28, 2012 at 4:54 pm
        Harry in Fair Oaks
        Participant

        It's just water, no other liquids.  I would call your protocol nurse and ask about the 2 hours before – that's not the way I've been doing it.  I just re-read the trial protocol, and it expressly says no food (only water) one hour before and two hours after.

        – Harry

        • January 28, 2012 at 4:54 pm
        Harry in Fair Oaks
        Participant

        It's just water, no other liquids.  I would call your protocol nurse and ask about the 2 hours before – that's not the way I've been doing it.  I just re-read the trial protocol, and it expressly says no food (only water) one hour before and two hours after.

        – Harry

        • January 28, 2012 at 5:17 pm
        chermes55
        Participant

        ya i read the same thing. like i said very confused. i go back on wednesday so i should have some solid answers by then. This past weds. was my first dose and since i had finished my coffee about 8:30 they told me i had to wait until 10:30 to take my first dose. i will definitely ask. also im not sure if im in the part A,B,C or D. they were rushing me around getting all my test done. I have to say that i am very dissappointed in the dermatologist associated with this trial. I canceled my normal drs appt because i figured my 3 mo exams would be part of this. He barely even looked at one arm and my shins. plan on making a new appt with my previous derm. for next week he is very thorough.

        • January 28, 2012 at 5:17 pm
        chermes55
        Participant

        ya i read the same thing. like i said very confused. i go back on wednesday so i should have some solid answers by then. This past weds. was my first dose and since i had finished my coffee about 8:30 they told me i had to wait until 10:30 to take my first dose. i will definitely ask. also im not sure if im in the part A,B,C or D. they were rushing me around getting all my test done. I have to say that i am very dissappointed in the dermatologist associated with this trial. I canceled my normal drs appt because i figured my 3 mo exams would be part of this. He barely even looked at one arm and my shins. plan on making a new appt with my previous derm. for next week he is very thorough.

        • January 28, 2012 at 8:47 pm
        Vermont_Donna
        Participant

        Dear Chermes55,

          Oh man what a terrible time you have had! yes interferon is rough! I only did two doses of the high dose before I got a mechanical phlebitis, cellulitis, and a blood clot and landed in the hospital for 4 days. Then I did 11 months of the low dose. I was on an antidepressant, Ritalin to boost my energy and i slept 15 hours a day/night. But it kept me NED for 11 months. Anyways, about you, I am so sorry that you have been diagnosed with melanoma, sorry that your gf left you and hope that you have a counselor or social worker who you can process all this stuff with!

        Please keep coming back to this board…you will find a fellowship of support and a lot of good information on alot of different treatments out there. It helps when you are speaking with your doctors to have heard of some of the treatments, and other people's experience. We all walk out own melanoma paths…our bodies and how we repsond are so different so dont let someone else's negative experience or lack of success keep you from discussing stuff with your melanoma team.

        Wishing you all the best,

        Vermont_Donna, stage 3a, NED

        • January 28, 2012 at 8:47 pm
        Vermont_Donna
        Participant

        Dear Chermes55,

          Oh man what a terrible time you have had! yes interferon is rough! I only did two doses of the high dose before I got a mechanical phlebitis, cellulitis, and a blood clot and landed in the hospital for 4 days. Then I did 11 months of the low dose. I was on an antidepressant, Ritalin to boost my energy and i slept 15 hours a day/night. But it kept me NED for 11 months. Anyways, about you, I am so sorry that you have been diagnosed with melanoma, sorry that your gf left you and hope that you have a counselor or social worker who you can process all this stuff with!

        Please keep coming back to this board…you will find a fellowship of support and a lot of good information on alot of different treatments out there. It helps when you are speaking with your doctors to have heard of some of the treatments, and other people's experience. We all walk out own melanoma paths…our bodies and how we repsond are so different so dont let someone else's negative experience or lack of success keep you from discussing stuff with your melanoma team.

        Wishing you all the best,

        Vermont_Donna, stage 3a, NED

        • January 28, 2012 at 8:47 pm
        Vermont_Donna
        Participant

        Dear Chermes55,

          Oh man what a terrible time you have had! yes interferon is rough! I only did two doses of the high dose before I got a mechanical phlebitis, cellulitis, and a blood clot and landed in the hospital for 4 days. Then I did 11 months of the low dose. I was on an antidepressant, Ritalin to boost my energy and i slept 15 hours a day/night. But it kept me NED for 11 months. Anyways, about you, I am so sorry that you have been diagnosed with melanoma, sorry that your gf left you and hope that you have a counselor or social worker who you can process all this stuff with!

        Please keep coming back to this board…you will find a fellowship of support and a lot of good information on alot of different treatments out there. It helps when you are speaking with your doctors to have heard of some of the treatments, and other people's experience. We all walk out own melanoma paths…our bodies and how we repsond are so different so dont let someone else's negative experience or lack of success keep you from discussing stuff with your melanoma team.

        Wishing you all the best,

        Vermont_Donna, stage 3a, NED

        • January 28, 2012 at 5:17 pm
        chermes55
        Participant

        ya i read the same thing. like i said very confused. i go back on wednesday so i should have some solid answers by then. This past weds. was my first dose and since i had finished my coffee about 8:30 they told me i had to wait until 10:30 to take my first dose. i will definitely ask. also im not sure if im in the part A,B,C or D. they were rushing me around getting all my test done. I have to say that i am very dissappointed in the dermatologist associated with this trial. I canceled my normal drs appt because i figured my 3 mo exams would be part of this. He barely even looked at one arm and my shins. plan on making a new appt with my previous derm. for next week he is very thorough.

        • January 28, 2012 at 4:54 pm
        Harry in Fair Oaks
        Participant

        It's just water, no other liquids.  I would call your protocol nurse and ask about the 2 hours before – that's not the way I've been doing it.  I just re-read the trial protocol, and it expressly says no food (only water) one hour before and two hours after.

        – Harry

        • January 28, 2012 at 4:32 pm
        chermes55
        Participant

        ya thats what i had read. not sure why my docs said 2 pre 2 post but i verified it and thats how they want me to do it. one of the study supervisors told me that if i took it right when i woke up i would only have to wait 1 hr post. very confusing to me. they also told me only water during those 4 hrs. not sure if that just means clear liqs or just water. 8-12 is a rough time without coffee. i am trying to keep a running list of q's for my dr on my 1 wk visit.

        Cliff

        • January 28, 2012 at 4:27 pm
        Harry in Fair Oaks
        Participant

        Hi Cliff,

        So you are on the same dosages as me.  A bit confused on your fasting – on this protocol I fast for 1 hour before the drugs, and 2 hours after.  So a total of 3 hours no food AM and PM.  If they changed this nobody told me!

        – Harry

        • January 28, 2012 at 4:19 pm
        chermes55
        Participant

        good to hear its working Harry! iam on the 75mg braf and 2mg mek. its good to hear about the minimal side effects you have had. after the destruction that interferon had on my life and relationship with only 5 mos. NED it is very good news.

        Cliff

      • January 28, 2012 at 4:14 pm
      Harry in Fair Oaks
      Participant

      Hi,

      I have been on the same trial since last May (I'm seen at the Angeles Clinic in L.A.).  What dosage of MEK are you taking along with the BRAF?  I take the drugs at similar times to you – 10 AM and 10 PM.  It becomes an easy routine after a while.

      As far as side effects, fatigue is the only lasting one I have.  There were fevers, chills and joint aches around weeks 4-6, but those have gone away.  And the most important thing:  my soft tissue mets have disappeared, the bone mets all look smaller or stable, and nothing new has appeared!

      Best wishes,

      Harry

      • January 29, 2012 at 4:02 am
      allimitchell
      Participant

      Hi,

      I was just wondering where you are participating in the trial?  Is there still open enrollment?  It sounds very promising.

       

      Thank you,

      Alli

      • January 29, 2012 at 4:02 am
      allimitchell
      Participant

      Hi,

      I was just wondering where you are participating in the trial?  Is there still open enrollment?  It sounds very promising.

       

      Thank you,

      Alli

        • January 29, 2012 at 4:16 am
        chermes55
        Participant

        i am seeing Dr. Jeffrey Weber at the H. Lee Moffitt Cancer Center in Tampa, Fl. im not sure as to whether it is open enrollment or not. My Oncologist had sent me over to him a few times for different trials but i was either disqualified because of radiation or for my HLA blood type. This one the only qualification i needed was to be braf+.

        • January 29, 2012 at 4:16 am
        chermes55
        Participant

        i am seeing Dr. Jeffrey Weber at the H. Lee Moffitt Cancer Center in Tampa, Fl. im not sure as to whether it is open enrollment or not. My Oncologist had sent me over to him a few times for different trials but i was either disqualified because of radiation or for my HLA blood type. This one the only qualification i needed was to be braf+.

        • January 29, 2012 at 4:16 am
        chermes55
        Participant

        i am seeing Dr. Jeffrey Weber at the H. Lee Moffitt Cancer Center in Tampa, Fl. im not sure as to whether it is open enrollment or not. My Oncologist had sent me over to him a few times for different trials but i was either disqualified because of radiation or for my HLA blood type. This one the only qualification i needed was to be braf+.

        • January 31, 2012 at 8:30 am
        LynnLuc
        Participant

        I believe the trial is still open…you can e mail Dr Weber  at jeffrey.weber@moffitt.org  and ask! He is my doc and I am in his anti pd 1 trial/peptides…he will respond .

        • January 31, 2012 at 8:30 am
        LynnLuc
        Participant

        I believe the trial is still open…you can e mail Dr Weber  at jeffrey.weber@moffitt.org  and ask! He is my doc and I am in his anti pd 1 trial/peptides…he will respond .

        • January 31, 2012 at 8:30 am
        LynnLuc
        Participant

        I believe the trial is still open…you can e mail Dr Weber  at jeffrey.weber@moffitt.org  and ask! He is my doc and I am in his anti pd 1 trial/peptides…he will respond .

      • January 29, 2012 at 4:02 am
      allimitchell
      Participant

      Hi,

      I was just wondering where you are participating in the trial?  Is there still open enrollment?  It sounds very promising.

       

      Thank you,

      Alli

      • January 30, 2012 at 3:37 pm
      chermes55
      Participant
      Six days and still no obvious side effects feeling good so far.
      • January 30, 2012 at 3:37 pm
      chermes55
      Participant
      Six days and still no obvious side effects feeling good so far.
      • January 30, 2012 at 3:37 pm
      chermes55
      Participant
      Six days and still no obvious side effects feeling good so far.
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