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Taf/Mek side effects

Forums General Melanoma Community Taf/Mek side effects

  • Post
    Mom2Addy
    Participant

      Help please! My husband has stage IV Melanoma with slow progression since 2014. While IPI and Nivo failed, his slow growth gives us time to try new meds. About 6 weeks ago he started Taflinar and Mekinist with minimal side effects, other than worsening of his Rheumatoid Arthritis which came on with the  Nivo. However lately, last 3 weeks or so, his mood swings toward me and our daughter have worsened. He's not physical but says really hurtful things and his anger and frustration go from 0 to 60 over the smallest things. I got to listen to what a terrible wife I am for two hours since I didn't say 'the right thing' this morning over a minor issue. Our daughter is 8 and if she doesn't listen the first time he snaps at her. I know he's stressed but his tumors have all been very small and now pretty much disappeared and our doctor tells him he's at no risk. I'm just wondering if anyone else has seen this type of side effect. It's not listed in the literature but I did see an old post here from another care giver. This is new for him and I'm afraid to even bring it to his attention. I'm beginning to withdraw and that's not going to help either of us. Plus I've been dealing with my own critical illness on top of it. Thanks for listening. 

      Footnote: I used to be a regular poster on here but feel it's best to be anonymous on this topic. I, too, struggled being on the site after Artie passed. 

    Viewing 17 reply threads
    • Replies
        Patina
        Participant

          Something like 40% of melanoma patients end up with brain mets. Mood changes can be a indicator that there is a problem. I would ask for a brain MRI to check this off the list first. If your doctor doesn't order one right away, find another doctor and get it done. You don't want to mess around with things like this.

          If it isnt' a brain met, start checking any medications he may be on and keep at it until you know what's what.

          Good Luck!

           

          Patina
          Participant

            Something like 40% of melanoma patients end up with brain mets. Mood changes can be a indicator that there is a problem. I would ask for a brain MRI to check this off the list first. If your doctor doesn't order one right away, find another doctor and get it done. You don't want to mess around with things like this.

            If it isnt' a brain met, start checking any medications he may be on and keep at it until you know what's what.

            Good Luck!

             

            Patina
            Participant

              Something like 40% of melanoma patients end up with brain mets. Mood changes can be a indicator that there is a problem. I would ask for a brain MRI to check this off the list first. If your doctor doesn't order one right away, find another doctor and get it done. You don't want to mess around with things like this.

              If it isnt' a brain met, start checking any medications he may be on and keep at it until you know what's what.

              Good Luck!

               

              kylez
              Participant

                I agree with what Patina is saying.

                kylez
                Participant

                  I agree with what Patina is saying.

                  kylez
                  Participant

                    I agree with what Patina is saying.

                    Jubes
                    Participant

                      Is he taking any steroids for the rheumatoid arthritis? I was pretty bitchy to my husband while on those. But I could hear myself and could note it at the time. I was aware. 

                      Anne-Louise 

                      Jubes
                      Participant

                        Is he taking any steroids for the rheumatoid arthritis? I was pretty bitchy to my husband while on those. But I could hear myself and could note it at the time. I was aware. 

                        Anne-Louise 

                        Jubes
                        Participant

                          Is he taking any steroids for the rheumatoid arthritis? I was pretty bitchy to my husband while on those. But I could hear myself and could note it at the time. I was aware. 

                          Anne-Louise 

                          Jubes
                          Participant

                            Is he taking any steroids for the rheumatoid arthritis? I was pretty bitchy to my husband while on those. But I could hear myself and could note it at the time. I was aware. 

                            Anne-Louise 

                            Jubes
                            Participant

                              Is he taking any steroids for the rheumatoid arthritis? I was pretty bitchy to my husband while on those. But I could hear myself and could note it at the time. I was aware. 

                              Anne-Louise 

                              Jubes
                              Participant

                                Is he taking any steroids for the rheumatoid arthritis? I was pretty bitchy to my husband while on those. But I could hear myself and could note it at the time. I was aware. 

                                Anne-Louise 

                                GAngel
                                Participant

                                  Hello.  I'm so sorry to hear that your husband is suffering from this side effect and I do believe that it IS a side effect.  My husband had been on the Taf/Mek combo for 2 1/2 years (intermittently) and is no longer taking it by choice. He remains NED according to his latest scan 2 weeks ago, and he has never had brain mets or any other problems with his brain.

                                  My husband definitely had periods of extreme moodiness during the time he was on the combo where he would get so angry and lash out for minor things that normally wouldn't have made him react at all.  His behavior was so unlike him because normally he is a type "B" personality, and just an overall nice person. Realizing that his outbursts were only happening while he was on the combo I aptly named his behavior “combo rage”.

                                  I feel terrible that you and your young daughter are dealing with the same “combo rage” that our family dealt with and I wish I had a solution, I don’t. I can only share with you what I did. First, I learned not to react whenever my husband was suffering from one of his episodes (which was hard at times because I am a type "A" personality) and I would just remind myself that it was the medication making him act that way. If I did react it was a conquer the situation with kindness approach and I would tell him I loved him when I really was thinking the opposite, lol, in an attempt to disarm him or diffuse the situation. Sometimes it worked, sometimes not. 

                                  We have two sons, now ages 17 and 27.  It was hard on them as well but because they are older they were able to understand why dad was acting so crazy; sadly, it may be harder for a little girl your daughter’s age to comprehend. The good news is that my husband’s episodes seemed to happen less frequently as time passed so hopefully that will be the case with your husband.  

                                  I did mention my husband’s outbursts to his oncologist when it started happening and he was hesitant to connect his moodiness and anger to the medications and felt that it was probably more to blame on depression associated with his cancer diagnosis.  I eventually concluded that his oncologist was wrong and that there is a connection to the meds but that's just my opinion. You should tell his oncologist what is going on and maybe he will be able to assist you on the best way to handle the situation. 

                                  I wish you and your family the best in dealing with this issue as well as all of the other hurdles that you will face in the melanoma journey.  It won’t be easy but you will get through it.

                                  Blessings!

                                  Gina

                                  GAngel
                                  Participant

                                    Hello.  I'm so sorry to hear that your husband is suffering from this side effect and I do believe that it IS a side effect.  My husband had been on the Taf/Mek combo for 2 1/2 years (intermittently) and is no longer taking it by choice. He remains NED according to his latest scan 2 weeks ago, and he has never had brain mets or any other problems with his brain.

                                    My husband definitely had periods of extreme moodiness during the time he was on the combo where he would get so angry and lash out for minor things that normally wouldn't have made him react at all.  His behavior was so unlike him because normally he is a type "B" personality, and just an overall nice person. Realizing that his outbursts were only happening while he was on the combo I aptly named his behavior “combo rage”.

                                    I feel terrible that you and your young daughter are dealing with the same “combo rage” that our family dealt with and I wish I had a solution, I don’t. I can only share with you what I did. First, I learned not to react whenever my husband was suffering from one of his episodes (which was hard at times because I am a type "A" personality) and I would just remind myself that it was the medication making him act that way. If I did react it was a conquer the situation with kindness approach and I would tell him I loved him when I really was thinking the opposite, lol, in an attempt to disarm him or diffuse the situation. Sometimes it worked, sometimes not. 

                                    We have two sons, now ages 17 and 27.  It was hard on them as well but because they are older they were able to understand why dad was acting so crazy; sadly, it may be harder for a little girl your daughter’s age to comprehend. The good news is that my husband’s episodes seemed to happen less frequently as time passed so hopefully that will be the case with your husband.  

                                    I did mention my husband’s outbursts to his oncologist when it started happening and he was hesitant to connect his moodiness and anger to the medications and felt that it was probably more to blame on depression associated with his cancer diagnosis.  I eventually concluded that his oncologist was wrong and that there is a connection to the meds but that's just my opinion. You should tell his oncologist what is going on and maybe he will be able to assist you on the best way to handle the situation. 

                                    I wish you and your family the best in dealing with this issue as well as all of the other hurdles that you will face in the melanoma journey.  It won’t be easy but you will get through it.

                                    Blessings!

                                    Gina

                                    GAngel
                                    Participant

                                      Hello.  I'm so sorry to hear that your husband is suffering from this side effect and I do believe that it IS a side effect.  My husband had been on the Taf/Mek combo for 2 1/2 years (intermittently) and is no longer taking it by choice. He remains NED according to his latest scan 2 weeks ago, and he has never had brain mets or any other problems with his brain.

                                      My husband definitely had periods of extreme moodiness during the time he was on the combo where he would get so angry and lash out for minor things that normally wouldn't have made him react at all.  His behavior was so unlike him because normally he is a type "B" personality, and just an overall nice person. Realizing that his outbursts were only happening while he was on the combo I aptly named his behavior “combo rage”.

                                      I feel terrible that you and your young daughter are dealing with the same “combo rage” that our family dealt with and I wish I had a solution, I don’t. I can only share with you what I did. First, I learned not to react whenever my husband was suffering from one of his episodes (which was hard at times because I am a type "A" personality) and I would just remind myself that it was the medication making him act that way. If I did react it was a conquer the situation with kindness approach and I would tell him I loved him when I really was thinking the opposite, lol, in an attempt to disarm him or diffuse the situation. Sometimes it worked, sometimes not. 

                                      We have two sons, now ages 17 and 27.  It was hard on them as well but because they are older they were able to understand why dad was acting so crazy; sadly, it may be harder for a little girl your daughter’s age to comprehend. The good news is that my husband’s episodes seemed to happen less frequently as time passed so hopefully that will be the case with your husband.  

                                      I did mention my husband’s outbursts to his oncologist when it started happening and he was hesitant to connect his moodiness and anger to the medications and felt that it was probably more to blame on depression associated with his cancer diagnosis.  I eventually concluded that his oncologist was wrong and that there is a connection to the meds but that's just my opinion. You should tell his oncologist what is going on and maybe he will be able to assist you on the best way to handle the situation. 

                                      I wish you and your family the best in dealing with this issue as well as all of the other hurdles that you will face in the melanoma journey.  It won’t be easy but you will get through it.

                                      Blessings!

                                      Gina

                                      Momofjake
                                      Participant

                                        My son is 19 now. 2 years since diagnosis. He is on Taf. He could not tolerate the combo. His mood gets pretty tough. I do believe it's a side effect. Jake occasionally actually speaks to me and says he just doesn't feel like himself. It's hard to live with but even harder to watch. Caregivers can have a rough go I know. I just try to take it all I can and know it's a privilege to be his person in this. I am sorry for the heartache! We are all in this together!

                                        Kerri

                                        Momofjake
                                        Participant

                                          My son is 19 now. 2 years since diagnosis. He is on Taf. He could not tolerate the combo. His mood gets pretty tough. I do believe it's a side effect. Jake occasionally actually speaks to me and says he just doesn't feel like himself. It's hard to live with but even harder to watch. Caregivers can have a rough go I know. I just try to take it all I can and know it's a privilege to be his person in this. I am sorry for the heartache! We are all in this together!

                                          Kerri

                                          Momofjake
                                          Participant

                                            My son is 19 now. 2 years since diagnosis. He is on Taf. He could not tolerate the combo. His mood gets pretty tough. I do believe it's a side effect. Jake occasionally actually speaks to me and says he just doesn't feel like himself. It's hard to live with but even harder to watch. Caregivers can have a rough go I know. I just try to take it all I can and know it's a privilege to be his person in this. I am sorry for the heartache! We are all in this together!

                                            Kerri

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