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TAF/MEK severe side effects
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TAF/MEK severe side effects

› Forums › General Melanoma Community › TAF/MEK severe side effects

  • Post
    • May 5, 2018 at 3:12 pm
    VinceMart
    Participant

      I am a 46 year old male diagnosed with Stage 4 at least 3 liver mets, and 1 lung met.  After failing 3 months of Pembro I started Taf/Mek in April.  After 7 days on combo, severe side effects including, rash over 50 percent of body, pain in joints, back pain, cough, headache, fevers, chills, severe shaking, pain in soles of feet, Dr. held meds for 5 days.  Started again with am dose and 4 hours later all side effects were back 10 times worse than the first time.  Went to ER that night for dehydration.  Now on steriod and antibiotic for possible lung infection.  Meds being held again until Dr. appt next week.  Anyone else experience this severity on Taf/Mek?  I was on interferon for a year in 2014 and did not have anything like this.  Worried to give this a try again.

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        • May 6, 2018 at 8:26 am
        doxiemom
        Participant

          I also experienced similar side effects with the TAF/MEK combo (fevers/rashes). I was taking it 7 days a week, but had to stop due to the side effects. I am now on a staggered schedule — 4 days on/3 days off — and I’m tolerating it fine …no more fevers/rashes. 

            • May 6, 2018 at 9:59 pm
            VinceMart
            Participant

              Thanks Dixiemom for the update. I see my oncologist on Tuesday and hopefully they will try a staggered approach as well. Were you rashes just like acne or were there painful, hive like welts that felt like bruises?

              Thoughts and prayers for you and everyone in this group. I hope you get well soon. 

              Thanks again for your response, it is very helpful. 

               

              • May 6, 2018 at 10:11 pm
              Linda5
              Participant

                I have these welts on a recurring basis…they are apparently fairly common and werediagnosed as erythema nodosum.  I was given a prescription for low dose prednisone to fill if they became hard to tolerate.

                • May 9, 2018 at 6:26 pm
                VinceMart
                Participant

                  Hi Linda,  Mine are extremely painful like shingles.  Did you experience pain with the welts?

                  • May 9, 2018 at 6:59 pm
                  Linda5
                  Participant

                    Yes, although I would say moderately on my part.  they feel like tender bruises, and really sting if you bump them into something.  I have not had to resort to the prednisone prescription yet…mine come in waves and the first was the worst so far. 

                    • May 9, 2018 at 10:46 pm
                    VinceMart
                    Participant

                      Mine are all over and very painful and my joints and tendons in my legs and back seize up. 

                      • May 9, 2018 at 10:54 pm
                      Linda5
                      Participant

                        I was on Taf/Mek initially then flipped to Keytruda and Yervoy with mixed results…flipped back to the Taf/mek as a couple of mets were progressing (lung and 1 sub q).  The first round I had mild side effects but worked throughout…this time I have been off work.  My onco did say that they’re finding that folks who have been on immunotherapy seem to have stronger side effects than those who are using it first line…

                        i hope they can sort this out for you.  

                        Linda

                        • May 8, 2018 at 11:18 pm
                        s Mom
                        Participant

                          Hi VinceMart.  My daughter started on Interferon with minimal side effects.  Disease progressed.  She did 3 rounds of Keytruda with minimal side effects and the cancer spread.  She started the Mek/Taf combo on April 19, 2018.  Started with flu like symptoms.  She has been in ICU since May 1.  High fever, low blood pressure, fluid retention.  She had to be on a ventilator.  Today, she is still in ICU and is trying to speak and has started physical therapy.  The doctors cannot find a reason that this has happened.  We were told that the minute a fever reaches 100.5 we need to call triage.  I wish the very best for you. This medicine scares me.  It was supposed to have amazing results.  We almost lost her.

                          • May 9, 2018 at 6:21 pm
                          VinceMart
                          Participant

                            Hi Amanda’s Mom,  Thank you for your reply.  After meeting with my oncologist yesterday, we started back today with prednisone prior to my am dose of Taf.  Within 2 hours, all my symptoms were back,  e nodosum rash,  aches, shakes, low blood pressure. I can’t continue like this.  I am wondering if this just cannot be tolerated by some people.  I am so sorry your daughter has been in I C U.  Wishing her recovery to be quick and a better treatment option on the horizon.  I will have to speak with my Dr. regarding your daughters experience as I feel I am approaching that myself if I continue.    

                          • May 7, 2018 at 12:31 pm
                          marta010
                          Participant

                            HI VinceMart – my husband has been on Tafinlar for 4+ years and started before MEK was available.  He was originally on Taf/MEK but we found he couldn't tolerate Mekinist – every time we introduced it, he ended up in the ER with severe chills and fevers.  After much trial and error, he ended up on 3/4 dose (2 pills in the am and 1 at night) which eliminated the fever/chill problems.  He has had a few issues with large painless welts on his skin – sort of like hives – stops taking the Tafinlar for a few days until it resolves and then gets back on.  Hope you're able to find a dosage schedule that works for you.

                            Ann

                              • May 9, 2018 at 6:25 pm
                              VinceMart
                              Participant

                                Thank you Ann,  I am happy to hear your husband is doing well in the adjusted dosage.  Unfortunately, I don’t feel I am going to be able to continue.  Hoping there is another option for me.  Best wishes for continued health for your husband.

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