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Northern Son

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      Northern Son
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        Hi i have dealt with this throughout my Taf/Meck treatment i have been on combo 20 months and have been on and off for this reason.They are sore and come on legs arms and back and can number as many as 34.They resolve in about 2 weeks once treatment is stopped.They are starting quicker the longer i am on treatment,used to come after 8 weeks now can come after 9 days. I am on lowest dose in attempt to keep them manageable. Dr. now thinking of using low dose prednesone daily to try prevent them,not sure i want to go on that as i am NED and have sleep issues now which the steriods wont help. Being on and off them hasent seemed to hurt treatment to much as have been NED the whole time.
        Hope they are not to painful for you and your tratment goes well, blessings to you.
        Northern Son
        Participant
          I was diagnosied with recurrance melanoma stage 4 2 years ago and surgury was not possible i was told ,large tumor in neck. I was put on Roche combo and was on just 11 days had bad skin reaction so stopped treatment. Over next 3 months tumour shrank away and PET SCAN then showed NED.I then started Novartis combo and have erytha nodosum like leasion as side effect that clear up when off Dabrafeneb and Meck. So am off and on drugs every 3 weeks even though i am on lowest dose.Iam still NED 21 months later. I hope this gives you hope as even at low doses and sometimes short time frame they can work wonders.Sending love and prayers to you,try to keep positive outlook i know that has helped me i hope it will help you as well.
          Northern Son
          Participant
            Hello Anni, i am on this combo and because of side effects am on reduced dosage and in effect been on intermittent dosing as well because of taking breaks when erythum nodosum becomes to numurous and painful.It worked out that i ended up being on meds about 3 weeks and taking 2 week break till ED resolved.I have been on combos for 2 years now and one of my Dr.s said there is some history of patients that end up taking breaks from meds for symptom reasons have longer response to drugs before possible resistance sets in.That is what i have read from animal studies on the internet as well.There is a human study in the U.S. that is using a 1 week on combo 3 week off then 4 week back on schedule, so a 56 day cycle. ed has posted a link to it SWOG 1320 in a previous post on intermittant dosing about a week ago.
            So i am now trying this routine started 3 weeks ago ,it comes down to 5 weeks on and 3 weeks off over the cycle.I have had good results from the targeted therapy even though lower dose and taking breaks as i am NED now.Wishing you and your sister luck.
            Hope this is helpful,wish you
            Northern Son
            Participant
              I would agree with JulieT that talking to DR. about dose reduction could be very helpful.At full dose of the combo i had many symptoms you describe and for me it was best to go on lower dose. I am NED and have heard other stories of people who became NED on lower doses of the DAB/MECK combo.I wish you all the best with your continued treatment.
              Northern Son
              Northern Son
              Participant
                Thanks for the link Ed much appreciated .
                Northern Son
                Participant
                  Hi Linda i am on theTaf /Mek COMBO as well and have erythema nodosum as well and take breaks every 2 weeks as i can get as many as 30 spots.My doctor is suggesting steriods to possibly stop them , did you try steriods to resolve your E N.
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