Stopping Keytruda treatment?
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Stopping Keytruda treatment?

› Forums › General Melanoma Community › Stopping Keytruda treatment?

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    • February 19, 2018 at 9:31 pm
    RedRobyn
    Participant

    Hi there! I have been having Pembrolizumab treatment for one year. My melanoma had spread to my lungs, a rib, and right shoulder. All were very small and caught early. I have since had three clear PET scans. I count myself as one very lucky woman. Just wondering if anyone has stopped treatment because there's no evidence of disease and if so, how are your side effects and have you remained clear of melanoma?

    TIA

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      • February 19, 2018 at 10:14 pm
      Casitas1
      Participant

      Hi! I came of treatment (Pembro) after 7 Mo. Due to side effects. I have been NED  for 20 months now. The side effects were brutal ( Arthritis, Pancreatitis, Cough and body aches ) been off treatment a little over a year and side effects still significant mainly joint pain body aches.

      Congrats on NED,

      Paul

      • February 20, 2018 at 3:13 pm
      cancersnewnormal
      Participant

      I stopped Pembro after 20 months, due to developing mild pancreatitis and increasingly bad arthritis. My last infusion was July 5, 2016… I'm still clear. I was on sulfasalazine for the arthritis, but stopped taking that 6 weeks ago and seem to be "ok". I still have minor issues with it, but nothing like the debilitating pain that I had for half of 2016. Thyroid still shot… still on anti-seizure meds… #2's have FINALLY returned to a more normal state… pancreatitis seems to have gone away, although I do have to watch certain foods and avoid alcohol. It seemed terrifying to stop the infusions initially, so we set our minds that this was more of "taking a break" to clear up the pancreatic side effects. With no new mela-meat issues, the break seems to be getting more an more permanent with each passing scan! Unfortunately, there are no solid answers on when it's ok for any particular individual to stop. Scans are still very nerve wracking, but I'm pretty certain that'll be a "forever" feeling. Good luck with your decision, and CONGRATS on the NED! 

      • April 22, 2018 at 8:03 am
      ldcroberts
      Participant

      I was NED after 3 months on keytruda so i stopped it after 9 months, I’ve since had 2x 3 monthly scans since both clear. I had no side effects then or now. Good luck.

      • June 1, 2018 at 2:19 pm
      dennis.p
      Participant

      Hi RedRobyn,

      My dad has been on Keytruda for 6 months now (today he had his 9th infusion). The doctors say that for melanoma it is kinda lifelong treatment… Indeed if you see the leaflet https://www.accessdata.fda.gov/drugsatfda_docs/label/2016/125514s012lbl.pdf – please compare pts. 2.2, 2.3 and 2.4 – they say to stop keytruda for lung/head&neck cancers after 24 months in case of no progression, but nothing for melanoma… 

      This was a rather disappointing news (as the drug is prohibitively expensive), but it would be very interesting to hear what others' doctors say in other parts of the world (we are located in Ukraine).

      Stay healthy 🙂

       

       

       

       

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