› Forums › General Melanoma Community › Anyone Here on Combo BRAF/MEK Study – I just Started Last Week
- This topic has 38 replies, 7 voices, and was last updated 14 years, 3 months ago by
Tadams.
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- May 18, 2011 at 5:29 pm
I've not posted for a long time, but I've been on MPIP on and off since 1997. I was stage IV NED for 10+ years, until diagnosed with multiple bone mets and sub-q 3 months ago (boo hoo – but that's life).
I've not posted for a long time, but I've been on MPIP on and off since 1997. I was stage IV NED for 10+ years, until diagnosed with multiple bone mets and sub-q 3 months ago (boo hoo – but that's life).
I went to the Angeles Clinic to see Dr. O'day, and after positive typing for BRAF, I was randomized to the BRAF/MEK combo trial (with the highest level of MEK). I have been taking the drugs since last Thursday, and so far zero side effects. I'm just wondering, for those of you who are on BRAF and/or MEK, when did any side effects begin? We're going on a cruise next month, and I certainly don't want any nasty stuff happening then.
Thanks in advance for your responses,
Harry
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- May 18, 2011 at 6:43 pm
Hi Harry,
My husband has been on both of the drugs but separately. On Mek, the side effects happened in weeks 4-6 with dry itchy skin and a rash. On BRAF, side effects happened in week 4, with joint pain, fatigue , rash and nausea.
Cortinsone and Predisone took care of it both times….
Have a great cruise!
Emily
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- May 21, 2011 at 9:00 am
Hi Harry
Welcome to the BRAF/MEK train. Sorry the beast came back. So let me break down my BRAF/MEK experience for you. I was the same way – have been on it for about 12 weeks with lots of stuff to do so I wanted to know when and what to expect.
First two weeks where a breeze – like nothing was going on. Then I got fevers and chills for pretty much a week. I ended up coming off the meds and restarting slowly because the fever wouldn't go away -mine got pretty high but would come down. Let your coordinator know if you get them but they are going to tell you to alternate Tylenol and Advil every 4-6 hours. I would go with the 4 hours and headed off if you can. You may not have a continuous bout cause as with everything and this stupid disease everyone is different.
Week 4or 5 can't remember started having some minor shedding of the hair – I have a ton so it really wasn't a big deal only I noticed it and it has pretty much stopped – hopefully for good.
Also long about that time I started getting some joint pain and muscle fatigue – I have two little kids so I NEVER stop. There are days that my thighs and calves feel like I walked about 10 miles. My hips tend to ache and the bottoms of my feet ache all the time – NOT enough to keep me from doing anything just enough to say – hey look what MEL is doing for you. Again Tylenol and Advil seem to take care of all the issues but the feet- lord knows why. I am a big flip flop girl so sneakers tend to help.
I know you are going on a cruise to have FUN, FUN, FUN., and I wish I was going with you, but try to find moments to rest up when you can. If you are anything like me, and since you where NED for over 10 yrs hopefully you aren't, your body will let you know that you had all that fun for at least a week afterward.
Have a great time and try not to think about MEL-ville. I hate living here but what are you gonna do.
Hugs and Smiles
Dawn
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- May 21, 2011 at 9:00 am
Hi Harry
Welcome to the BRAF/MEK train. Sorry the beast came back. So let me break down my BRAF/MEK experience for you. I was the same way – have been on it for about 12 weeks with lots of stuff to do so I wanted to know when and what to expect.
First two weeks where a breeze – like nothing was going on. Then I got fevers and chills for pretty much a week. I ended up coming off the meds and restarting slowly because the fever wouldn't go away -mine got pretty high but would come down. Let your coordinator know if you get them but they are going to tell you to alternate Tylenol and Advil every 4-6 hours. I would go with the 4 hours and headed off if you can. You may not have a continuous bout cause as with everything and this stupid disease everyone is different.
Week 4or 5 can't remember started having some minor shedding of the hair – I have a ton so it really wasn't a big deal only I noticed it and it has pretty much stopped – hopefully for good.
Also long about that time I started getting some joint pain and muscle fatigue – I have two little kids so I NEVER stop. There are days that my thighs and calves feel like I walked about 10 miles. My hips tend to ache and the bottoms of my feet ache all the time – NOT enough to keep me from doing anything just enough to say – hey look what MEL is doing for you. Again Tylenol and Advil seem to take care of all the issues but the feet- lord knows why. I am a big flip flop girl so sneakers tend to help.
I know you are going on a cruise to have FUN, FUN, FUN., and I wish I was going with you, but try to find moments to rest up when you can. If you are anything like me, and since you where NED for over 10 yrs hopefully you aren't, your body will let you know that you had all that fun for at least a week afterward.
Have a great time and try not to think about MEL-ville. I hate living here but what are you gonna do.
Hugs and Smiles
Dawn
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- May 21, 2011 at 1:28 pm
Thanks for the detailed info, Dawn. The only side-effect my wife would like is the hair loss – I don't have much left on top, but plenty on my body! I feel great now, so what you describe is not very appetizing. But we do what we must.
Which clinic do you go to? Best wishes going forward.
– Harry
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- May 21, 2011 at 1:28 pm
Thanks for the detailed info, Dawn. The only side-effect my wife would like is the hair loss – I don't have much left on top, but plenty on my body! I feel great now, so what you describe is not very appetizing. But we do what we must.
Which clinic do you go to? Best wishes going forward.
– Harry
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- May 22, 2011 at 12:48 am
Hey there, Hi there, Ho there, Harry,
I ain't gonna lie – this Mel crap is a pain in the ASS! Flip side I lost my Mom to Stage IV Breast Cancer and compared to what she went through BRAF/MEK is a cake walk. I only hope it stays a cake walk. I go to Moffitt Cancer Center in Tampa – it's about 2 hours from my house but on the bright side they are building two satellite centers within 10 and 30 mins from my front door. Not all that crazy about my Dr. sometimes but as you said for the moment what are you gonna do – don't want to mess with my trial.
Where are you cruising to? Have a great time and let us know how you are doing – As MsMarilyn said having a great response to the drugs so I am hoping to hear the same from you soon.
Hugs and Smiles
Dawn
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- May 22, 2011 at 12:48 am
Hey there, Hi there, Ho there, Harry,
I ain't gonna lie – this Mel crap is a pain in the ASS! Flip side I lost my Mom to Stage IV Breast Cancer and compared to what she went through BRAF/MEK is a cake walk. I only hope it stays a cake walk. I go to Moffitt Cancer Center in Tampa – it's about 2 hours from my house but on the bright side they are building two satellite centers within 10 and 30 mins from my front door. Not all that crazy about my Dr. sometimes but as you said for the moment what are you gonna do – don't want to mess with my trial.
Where are you cruising to? Have a great time and let us know how you are doing – As MsMarilyn said having a great response to the drugs so I am hoping to hear the same from you soon.
Hugs and Smiles
Dawn
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- May 22, 2011 at 5:37 pm
Doing an Alaska cruise. This was planned 6 months ago – before the recent nastiness was discovered. So I can only hope the side-effects stay at bay.
I live about 350 miles from my clinic, so I envy your "short" commute."
Please look below – mrsmarilyn posed a question to you, but it was posted as a reply to me. Just want to make sure you see it.
Best wishes,
Harry
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- May 22, 2011 at 5:45 pm
Oops – I have mind fog! (probably not BRAF/MEK related). I now see it was you trying to contact her. Anyway, you might try posting it in a more direct way.
– Harry
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- May 22, 2011 at 5:45 pm
Oops – I have mind fog! (probably not BRAF/MEK related). I now see it was you trying to contact her. Anyway, you might try posting it in a more direct way.
– Harry
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- May 22, 2011 at 5:37 pm
Doing an Alaska cruise. This was planned 6 months ago – before the recent nastiness was discovered. So I can only hope the side-effects stay at bay.
I live about 350 miles from my clinic, so I envy your "short" commute."
Please look below – mrsmarilyn posed a question to you, but it was posted as a reply to me. Just want to make sure you see it.
Best wishes,
Harry
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- May 21, 2011 at 9:10 pm
Thanks Emily. I'm now into 2nd week & doing fine. Hopefully the 4-6 week issues I'm hearing about won't bite me too hard.
Best wishes,
Harry
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- May 21, 2011 at 9:10 pm
Thanks Emily. I'm now into 2nd week & doing fine. Hopefully the 4-6 week issues I'm hearing about won't bite me too hard.
Best wishes,
Harry
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- May 18, 2011 at 6:43 pm
Hi Harry,
My husband has been on both of the drugs but separately. On Mek, the side effects happened in weeks 4-6 with dry itchy skin and a rash. On BRAF, side effects happened in week 4, with joint pain, fatigue , rash and nausea.
Cortinsone and Predisone took care of it both times….
Have a great cruise!
Emily
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- May 21, 2011 at 3:01 pm
Hi! the cruise sounds great! My brother Gary's experiences –very similiar to Dawn's. He was into his sixth week and the high fever – around 104 F – remained constant – and he was told to back of the meds for about 5 days. He resumed the meds and it took him about a week to feel himself again. Severe joint pain, nausea and high fever went away. He is golfing this week – and almost 100% – with slight fatigue.
BUT-he has excellent response to BRAF/MEK GSK. All tumors have dissappeared except one. So keep going and enjoy your cruise! Maybe check with his dr. just in case some of these symptoms appear – and take extra meds –to relieve him.
Best of luck
MrsMarilyn
sister of Gary Stage IV
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- May 21, 2011 at 3:01 pm
Hi! the cruise sounds great! My brother Gary's experiences –very similiar to Dawn's. He was into his sixth week and the high fever – around 104 F – remained constant – and he was told to back of the meds for about 5 days. He resumed the meds and it took him about a week to feel himself again. Severe joint pain, nausea and high fever went away. He is golfing this week – and almost 100% – with slight fatigue.
BUT-he has excellent response to BRAF/MEK GSK. All tumors have dissappeared except one. So keep going and enjoy your cruise! Maybe check with his dr. just in case some of these symptoms appear – and take extra meds –to relieve him.
Best of luck
MrsMarilyn
sister of Gary Stage IV
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- May 21, 2011 at 9:14 pm
Thanks for the answer. I really hope the side-effects won't be too severe. Our cruise is scheduled for my week 4-5!
Best wishes,
Harry
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- May 21, 2011 at 9:14 pm
Thanks for the answer. I really hope the side-effects won't be too severe. Our cruise is scheduled for my week 4-5!
Best wishes,
Harry
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- May 23, 2011 at 4:35 pm
My husband has been on GSK BRAF/MEK trial at UCSF, taking the maximum dose of MEK. He has been on the trial for 10 weeks and has had intermittent fevers and chills, often lasting for several hours. Some days he is without symptoms and others are difficult. We can't seem to predict when the fevers and chills will hit. When they do hit, he is in bed until it passes. The good news is that his last PET scan showed a 61.8% shrinkage in his tumors, so it is certainly worth it.
Deborah
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- May 23, 2011 at 4:35 pm
My husband has been on GSK BRAF/MEK trial at UCSF, taking the maximum dose of MEK. He has been on the trial for 10 weeks and has had intermittent fevers and chills, often lasting for several hours. Some days he is without symptoms and others are difficult. We can't seem to predict when the fevers and chills will hit. When they do hit, he is in bed until it passes. The good news is that his last PET scan showed a 61.8% shrinkage in his tumors, so it is certainly worth it.
Deborah
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- May 23, 2011 at 4:35 pm
My husband has been on GSK BRAF/MEK trial at UCSF, taking the maximum dose of MEK. He has been on the trial for 10 weeks and has had intermittent fevers and chills, often lasting for several hours. Some days he is without symptoms and others are difficult. We can't seem to predict when the fevers and chills will hit. When they do hit, he is in bed until it passes. The good news is that his last PET scan showed a 61.8% shrinkage in his tumors, so it is certainly worth it.
Deborah
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- May 23, 2011 at 4:35 pm
My husband has been on GSK BRAF/MEK trial at UCSF, taking the maximum dose of MEK. He has been on the trial for 10 weeks and has had intermittent fevers and chills, often lasting for several hours. Some days he is without symptoms and others are difficult. We can't seem to predict when the fevers and chills will hit. When they do hit, he is in bed until it passes. The good news is that his last PET scan showed a 61.8% shrinkage in his tumors, so it is certainly worth it.
Deborah
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- August 16, 2011 at 3:45 pm
Hi,I’m new to the forum, thanks for posting, it’s really helpful to read whats going on. My husband was diagnosed in January 2011 with stage 4 melanoma. We’ve bee going to UCLA and have been participating in the BRAF study. The drug worked great for about 5 months then the demon cancer figured out a new pathway.
A slot just opened up for the BRAF/MEK study. Can anyone tell me what the screening process is like? What tests and what kind of results are they looking for in order to qualify??
Thanks,
Tadams -
- August 16, 2011 at 3:45 pm
Hi,I’m new to the forum, thanks for posting, it’s really helpful to read whats going on. My husband was diagnosed in January 2011 with stage 4 melanoma. We’ve bee going to UCLA and have been participating in the BRAF study. The drug worked great for about 5 months then the demon cancer figured out a new pathway.
A slot just opened up for the BRAF/MEK study. Can anyone tell me what the screening process is like? What tests and what kind of results are they looking for in order to qualify??
Thanks,
Tadams-
- August 16, 2011 at 6:11 pm
Hi,
Every trial has its own entry requirements. Typically they look for measurable disease in organs or soft tissue. Also, they want someone healthy enough to participate.
Again, every trial is different – the one I'm on is closed to new patients, so you must be referring to a different one. You should find out if the previous BRAF trial will not disqualify you.
Best wishes,
Harry
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- August 16, 2011 at 6:11 pm
Hi,
Every trial has its own entry requirements. Typically they look for measurable disease in organs or soft tissue. Also, they want someone healthy enough to participate.
Again, every trial is different – the one I'm on is closed to new patients, so you must be referring to a different one. You should find out if the previous BRAF trial will not disqualify you.
Best wishes,
Harry
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- August 16, 2011 at 3:46 pm
Hi,I’m new to the forum, thanks for posting, it’s really helpful to read whats going on. My husband was diagnosed in January 2011 with stage 4 melanoma. We’ve bee going to UCLA and have been participating in the BRAF study. The drug worked great for about 5 months then the demon cancer figured out a new pathway.
A slot just opened up for the BRAF/MEK study. Can anyone tell me what the screening process is like? What tests and what kind of results are they looking for in order to qualify??
Thanks,
Tadams -
- August 16, 2011 at 3:46 pm
Hi,I’m new to the forum, thanks for posting, it’s really helpful to read whats going on. My husband was diagnosed in January 2011 with stage 4 melanoma. We’ve bee going to UCLA and have been participating in the BRAF study. The drug worked great for about 5 months then the demon cancer figured out a new pathway.
A slot just opened up for the BRAF/MEK study. Can anyone tell me what the screening process is like? What tests and what kind of results are they looking for in order to qualify??
Thanks,
Tadams -
- August 16, 2011 at 3:56 pm
Can anyone please tell me what the screening process is like for the MEK study? My husband is already taking PLX 4032. Just got word this morning that a slot has opened up .Thanks,
Tadams-
- August 17, 2011 at 12:28 am
Hi Tandams,
I am a little confused…Has the slot open in a combo BRAF& Mek trial or just a Mek trial.
In either case, you should be able to find out what the clinical trial number is. Then you
would be able to find out the criteria & exclusions.
Typically, the screening process includes labs & scans.
What location site will the Braf/mek slot be open?
Good Luck with the trial,
Jan
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- August 17, 2011 at 12:28 am
Hi Tandams,
I am a little confused…Has the slot open in a combo BRAF& Mek trial or just a Mek trial.
In either case, you should be able to find out what the clinical trial number is. Then you
would be able to find out the criteria & exclusions.
Typically, the screening process includes labs & scans.
What location site will the Braf/mek slot be open?
Good Luck with the trial,
Jan
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