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- August 1, 2018 at 12:26 am
Hi MK, I can only tell you my experience in hopes it helps. Have been on Taf-Mek for 16 months for stage 4 melanoma. Had surgery to remove 28 lymph nodes in R axilla than was on Yervoy 6 months but abdominal lymph nodes continued to enlarge and had to have surgery on R neck to remove enlarged lymph nodes that were + for melanoma. Yervoy stopped and placed on Taf-Mek 16 months ago. After starting Taf-Mek lymph nodes in abdomen have decreased in size and have remained stable. As far as how long he will be on the treatment depends on how well he responds but usually on it until it becomes ineffective. From what I read and was told that is usually about 1 year but have read other folks have been on it for much longer. I figure it worked for me the past 16 months so am hoping will continue. Side effects vary. I can tell you that my side effects have lessened in that they don't occur as often but can be rough to handle. I do still have fatigue and always feel tired but still work full time (I'm 60) although some days are tough. Biggest side effects I've had are occasional upper and lower GI issues, but in general my appetite is unchanged. The worst I find are the occasional fevers. I've had temps over 103 and the shivering is horrible (bought a heating blanket…best investment) and take tylenol. I use extra strenght tylenol because regular does not help me at all. There was a point about 3 months after starting treatment that side effects got so bad my oncologist gave me a week "vacation" from the meds and lower my dose of Taf to 100mg twice a day instead of 150mg twice a day. It did seem to help a little bit but as noted above did not really lessen the side effects. I know it's rough but give it some time and see if it is working. I can tell you that I feel lucky. Yes, I have to deal with some bad days but they usually only last 3 or 4 days, and I am rolling along and getting to enjoy watching my grandchildren grow. I know it's difficult to keep postive but I always try to remember there is always someone that is much worse off than myself. I wish you and your husband the best and hope things will get better. Please keep us informed on how your husband is doing. Mike
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