The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

BRAF Combo Update / Help

Forums General Melanoma Community BRAF Combo Update / Help

  • Post
    MattF
    Participant

      I have not posted in a littel while so I wanted to just come in and say hello.

      Been on the Combo since Dec 2013….so far so good. Next scans are first week of May.

      I will say the combo seems to be doing great work and I really have had minimal side effects…although I did start getting a little down after the stage IV progression and I needed to let my oncologist know so he can address the issue.

      other than that i seem to get a lot of gas and bloating from the combo and some constipation…I have had some combo constipation vomiting then diaharea….so far only a couple really bad episodes but each time i think the stomach shrinks and i lose some weight. 

      Anyway…how is everyone else doing on it?

      any issues with abdomen? constipation? diahrea? lack of appitite etc?

      Matt

    Viewing 11 reply threads
    • Replies
        arthurjedi007
        Participant

          I've been on the taf/mek combo only a little over 5 weeks. I get my scan sometime in may.

          Week 3 was fevers but the acetamenophine get them down and I haven't had any more for 2 weeks.

          Week 4 started stomach issue. Felt like something the size of my fist was trying to burn a hole through me. It would last several hours and Tums did not seem to help. Nurse put me on Prevacid. After about a week the burning has gone away. But now almost every day my stomach just hurts. Last night mom put some jello powder in a hot cup of water that I sipped slowly and so far no stomach issues yet. Also I quit taking the Prevacid today for now.

          Other than that I have had no side affects with the combo.

          arthurjedi007
          Participant

            I've been on the taf/mek combo only a little over 5 weeks. I get my scan sometime in may.

            Week 3 was fevers but the acetamenophine get them down and I haven't had any more for 2 weeks.

            Week 4 started stomach issue. Felt like something the size of my fist was trying to burn a hole through me. It would last several hours and Tums did not seem to help. Nurse put me on Prevacid. After about a week the burning has gone away. But now almost every day my stomach just hurts. Last night mom put some jello powder in a hot cup of water that I sipped slowly and so far no stomach issues yet. Also I quit taking the Prevacid today for now.

            Other than that I have had no side affects with the combo.

            arthurjedi007
            Participant

              I've been on the taf/mek combo only a little over 5 weeks. I get my scan sometime in may.

              Week 3 was fevers but the acetamenophine get them down and I haven't had any more for 2 weeks.

              Week 4 started stomach issue. Felt like something the size of my fist was trying to burn a hole through me. It would last several hours and Tums did not seem to help. Nurse put me on Prevacid. After about a week the burning has gone away. But now almost every day my stomach just hurts. Last night mom put some jello powder in a hot cup of water that I sipped slowly and so far no stomach issues yet. Also I quit taking the Prevacid today for now.

              Other than that I have had no side affects with the combo.

              Pennie Jo
              Participant

                My sister is now In her 3rd week of the combo. She has experienced the spike in fevers now controlled w steroids. Her other side effects are nausea / vomiting, constipation (best to use Miralax daily!!)  cronique fatigue, occasional head aches, blurred vision and now dizziness. She was previously taking Zelboraf – to which she responded very well the first few weeks. Unfortunately it ran its course after 4 1/2 months. She is at a very critical stage IV – her oncologist said her level of progression is one of the worst they have experienced in his office. The combo does not seem to be working for her. She is continuing to see more rapid growing of knots and other challenges. She has nodules on her spine (several), ribs and her temple as well as multiple throughout her torso area. We are trying the combo for another 2 weeks to see if she responds. This group has been one of the best things I have encountered over the last 6 months! However, the one thing I have discovered on this journey is – every single case is very different and each person responds to the same treatment differently. Gods graces to you as you continue to fight!!! 

                Pennie 

                Pennie Jo
                Participant

                  My sister is now In her 3rd week of the combo. She has experienced the spike in fevers now controlled w steroids. Her other side effects are nausea / vomiting, constipation (best to use Miralax daily!!)  cronique fatigue, occasional head aches, blurred vision and now dizziness. She was previously taking Zelboraf – to which she responded very well the first few weeks. Unfortunately it ran its course after 4 1/2 months. She is at a very critical stage IV – her oncologist said her level of progression is one of the worst they have experienced in his office. The combo does not seem to be working for her. She is continuing to see more rapid growing of knots and other challenges. She has nodules on her spine (several), ribs and her temple as well as multiple throughout her torso area. We are trying the combo for another 2 weeks to see if she responds. This group has been one of the best things I have encountered over the last 6 months! However, the one thing I have discovered on this journey is – every single case is very different and each person responds to the same treatment differently. Gods graces to you as you continue to fight!!! 

                  Pennie 

                  Pennie Jo
                  Participant

                    My sister is now In her 3rd week of the combo. She has experienced the spike in fevers now controlled w steroids. Her other side effects are nausea / vomiting, constipation (best to use Miralax daily!!)  cronique fatigue, occasional head aches, blurred vision and now dizziness. She was previously taking Zelboraf – to which she responded very well the first few weeks. Unfortunately it ran its course after 4 1/2 months. She is at a very critical stage IV – her oncologist said her level of progression is one of the worst they have experienced in his office. The combo does not seem to be working for her. She is continuing to see more rapid growing of knots and other challenges. She has nodules on her spine (several), ribs and her temple as well as multiple throughout her torso area. We are trying the combo for another 2 weeks to see if she responds. This group has been one of the best things I have encountered over the last 6 months! However, the one thing I have discovered on this journey is – every single case is very different and each person responds to the same treatment differently. Gods graces to you as you continue to fight!!! 

                    Pennie 

                    ecc26
                    Participant

                      Hi,

                      You gotta love medications that have side effects that include BOTH constipation and diarrhea as possibilities, right? I've been on the combo just a couple weeks less than you. I have not really experienced anything noticable for side effects so far, except that I have what I think is a rash (I see the dermatologist tomorrow) on the backs of my legs. As far as the gut- when I started the combo, my gut actually got better (it had gotten quite screwey from the Yervoy). I do have some minor GI issues now and then, but on my last scan they also found an intussusception (where one part of the intestine gets sucked in by then next part, like a telescope). My doctor said it was no big deal in adults unless I was having symptoms, which surprised me as in the veterinary world intussusceptions are a very big deal. Anyway, every couple of weeks I get a day where I get kind of gassy and bloated and go 3-5 times, each time getting looser, until it's basically water. My stomach has always been fine and I've been attributing the bowel issues to the intussusception, but I suppose it could be from the combo. What I experience seems much more mild than what you're dealing with. I do find that I will get gassy, but often it seems to be related to my diet- in particular with the amount of sweet or sugary food I eat. Even a bowl of honey nut cheerios will give me gas these days. Not the worst thing in the world, I suppose, to avoid sugar, but sure makes life less enjoyable sometimes. Are you chronically losing weight, or do you just drop a couple of pounds when this happens then gain it back? If you just drop a little and gain it right back it's probably water loss and you should make sure you're very well hydrated. I'm sure you've talked to your doctor about it- did he have any suggestions?

                      Ironically, my husband (and his father) has episodes similar to what you're describing (constipation followed by diarrhea) and he's never been on any medication for anything. Both he and his father have been to multiple doctors to try and get an answer- it's got to be some sort of irritable bowel or something- but so far no one has been able to figure it out. Perhaps your immune system is affecting your gut a bit? In animals when things aren't normal (in particular I'm thinking of horses), the bacteria in the gut freak out and the balance goes haywiire. The result is often bacterial toxins get produced and leech into the blood stream, causing the animal to feel really ill. I wonder if something similar happens with people?

                      Good luck

                      ecc26
                      Participant

                        Hi,

                        You gotta love medications that have side effects that include BOTH constipation and diarrhea as possibilities, right? I've been on the combo just a couple weeks less than you. I have not really experienced anything noticable for side effects so far, except that I have what I think is a rash (I see the dermatologist tomorrow) on the backs of my legs. As far as the gut- when I started the combo, my gut actually got better (it had gotten quite screwey from the Yervoy). I do have some minor GI issues now and then, but on my last scan they also found an intussusception (where one part of the intestine gets sucked in by then next part, like a telescope). My doctor said it was no big deal in adults unless I was having symptoms, which surprised me as in the veterinary world intussusceptions are a very big deal. Anyway, every couple of weeks I get a day where I get kind of gassy and bloated and go 3-5 times, each time getting looser, until it's basically water. My stomach has always been fine and I've been attributing the bowel issues to the intussusception, but I suppose it could be from the combo. What I experience seems much more mild than what you're dealing with. I do find that I will get gassy, but often it seems to be related to my diet- in particular with the amount of sweet or sugary food I eat. Even a bowl of honey nut cheerios will give me gas these days. Not the worst thing in the world, I suppose, to avoid sugar, but sure makes life less enjoyable sometimes. Are you chronically losing weight, or do you just drop a couple of pounds when this happens then gain it back? If you just drop a little and gain it right back it's probably water loss and you should make sure you're very well hydrated. I'm sure you've talked to your doctor about it- did he have any suggestions?

                        Ironically, my husband (and his father) has episodes similar to what you're describing (constipation followed by diarrhea) and he's never been on any medication for anything. Both he and his father have been to multiple doctors to try and get an answer- it's got to be some sort of irritable bowel or something- but so far no one has been able to figure it out. Perhaps your immune system is affecting your gut a bit? In animals when things aren't normal (in particular I'm thinking of horses), the bacteria in the gut freak out and the balance goes haywiire. The result is often bacterial toxins get produced and leech into the blood stream, causing the animal to feel really ill. I wonder if something similar happens with people?

                        Good luck

                        ecc26
                        Participant

                          Hi,

                          You gotta love medications that have side effects that include BOTH constipation and diarrhea as possibilities, right? I've been on the combo just a couple weeks less than you. I have not really experienced anything noticable for side effects so far, except that I have what I think is a rash (I see the dermatologist tomorrow) on the backs of my legs. As far as the gut- when I started the combo, my gut actually got better (it had gotten quite screwey from the Yervoy). I do have some minor GI issues now and then, but on my last scan they also found an intussusception (where one part of the intestine gets sucked in by then next part, like a telescope). My doctor said it was no big deal in adults unless I was having symptoms, which surprised me as in the veterinary world intussusceptions are a very big deal. Anyway, every couple of weeks I get a day where I get kind of gassy and bloated and go 3-5 times, each time getting looser, until it's basically water. My stomach has always been fine and I've been attributing the bowel issues to the intussusception, but I suppose it could be from the combo. What I experience seems much more mild than what you're dealing with. I do find that I will get gassy, but often it seems to be related to my diet- in particular with the amount of sweet or sugary food I eat. Even a bowl of honey nut cheerios will give me gas these days. Not the worst thing in the world, I suppose, to avoid sugar, but sure makes life less enjoyable sometimes. Are you chronically losing weight, or do you just drop a couple of pounds when this happens then gain it back? If you just drop a little and gain it right back it's probably water loss and you should make sure you're very well hydrated. I'm sure you've talked to your doctor about it- did he have any suggestions?

                          Ironically, my husband (and his father) has episodes similar to what you're describing (constipation followed by diarrhea) and he's never been on any medication for anything. Both he and his father have been to multiple doctors to try and get an answer- it's got to be some sort of irritable bowel or something- but so far no one has been able to figure it out. Perhaps your immune system is affecting your gut a bit? In animals when things aren't normal (in particular I'm thinking of horses), the bacteria in the gut freak out and the balance goes haywiire. The result is often bacterial toxins get produced and leech into the blood stream, causing the animal to feel really ill. I wonder if something similar happens with people?

                          Good luck

                          bj63
                          Participant

                            I had some issues early on with the combo.  No significant nausea, thank goodness. But I fought bowel issues – mostly diarrhea – for about the first four-to-six weeks.  I finally went on a very bland diet – plain rice, mashed potatoes, oatmeal, grits, non-spicy soups, plain white bread, etc.  I also allowed myself seasonings that weren't overly spicy – salt, black pepper (in moderation), a small amount of soy sauce, butter, jams, jellies, etc.  I also took immodium – some times for a few days at a time.

                            Once things started to settle down, I slowly started introducing other foods and I kept a log of the food and the results so I could figure out if specific foods were the problem.  What I found was spicy foods, overly acidic foods (like heavy tomato sauces), oily/greasy foods (deep fried anything), and certain processed foods set me off very quickly.

                            Since then I've kept my diet relatively simple and bland, with the problem mostly clearing up. It seems that this drug combination just makes the stomach more sensitive. I used to eat all kinds of spicy, blazing hot foods but I had to retire all my hot sauces.  The spiciest thing I eat now is yellow mustard.

                            bj63
                            Participant

                              I had some issues early on with the combo.  No significant nausea, thank goodness. But I fought bowel issues – mostly diarrhea – for about the first four-to-six weeks.  I finally went on a very bland diet – plain rice, mashed potatoes, oatmeal, grits, non-spicy soups, plain white bread, etc.  I also allowed myself seasonings that weren't overly spicy – salt, black pepper (in moderation), a small amount of soy sauce, butter, jams, jellies, etc.  I also took immodium – some times for a few days at a time.

                              Once things started to settle down, I slowly started introducing other foods and I kept a log of the food and the results so I could figure out if specific foods were the problem.  What I found was spicy foods, overly acidic foods (like heavy tomato sauces), oily/greasy foods (deep fried anything), and certain processed foods set me off very quickly.

                              Since then I've kept my diet relatively simple and bland, with the problem mostly clearing up. It seems that this drug combination just makes the stomach more sensitive. I used to eat all kinds of spicy, blazing hot foods but I had to retire all my hot sauces.  The spiciest thing I eat now is yellow mustard.

                              bj63
                              Participant

                                I had some issues early on with the combo.  No significant nausea, thank goodness. But I fought bowel issues – mostly diarrhea – for about the first four-to-six weeks.  I finally went on a very bland diet – plain rice, mashed potatoes, oatmeal, grits, non-spicy soups, plain white bread, etc.  I also allowed myself seasonings that weren't overly spicy – salt, black pepper (in moderation), a small amount of soy sauce, butter, jams, jellies, etc.  I also took immodium – some times for a few days at a time.

                                Once things started to settle down, I slowly started introducing other foods and I kept a log of the food and the results so I could figure out if specific foods were the problem.  What I found was spicy foods, overly acidic foods (like heavy tomato sauces), oily/greasy foods (deep fried anything), and certain processed foods set me off very quickly.

                                Since then I've kept my diet relatively simple and bland, with the problem mostly clearing up. It seems that this drug combination just makes the stomach more sensitive. I used to eat all kinds of spicy, blazing hot foods but I had to retire all my hot sauces.  The spiciest thing I eat now is yellow mustard.

                            Viewing 11 reply threads
                            • You must be logged in to reply to this topic.
                            About the MRF Patient Forum

                            The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                            The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                            Popular Topics