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AB

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      • March 1, 2017 at 3:19 am
      AB
      Participant

        Hi Bill,  27 infusions is amazing. How long did it take to get used to the side effects, and feeling sick in perpetuity? 

        I had my 2nd Keytruda infusion last Friday and as a very active, athletic, FT working and traveling cross country every other week, mother of twin 8th graders….I've been pretty depressed about the side effects I've had. I'm relatively exhausted (60% strength), weaker, have a constant headache and cough, am very hoarse and shortness of breath. I plan to stop feeling sorry for myself and accept that it could be a lot worse…..

        I'm trying to get my head around the fact, that if Keytruda works, I will be sickly the rest of my life, but I will be alive to see my kids get to college- which is my goal.

        Did you experience these side effects? Did they dissipate? I had fevers from 102-4.

        Thanks- Andrea- stage 4 (4 mets in right leg &1 in right foot, and 1 active lymph node on each left and right hip- no brain, chest, abdomen, pelvis activity)

        • May 5, 2017 at 2:32 am
        AB
        Participant

          Hi Lydia- please keep me posted! Frustrating to take a running break, and Keytruda makes my joints and large muscles ache. 

          • May 5, 2017 at 2:29 am
          AB
          Participant

            Thanks! The toxicity and unknown side-effects are a real issue, in the long-run. That's our concern…no history

            • May 5, 2017 at 2:27 am
            AB
            Participant

              Thanks Paul. How often do you get scans now?

               

              • May 5, 2017 at 2:27 am
              AB
              Participant

                Thanks

                • May 5, 2017 at 2:26 am
                AB
                Participant

                  Thank you- may we hear many more stories like mine!

                  • May 5, 2017 at 2:25 am
                  AB
                  Participant

                    Thank you! My onc suggests a total of 8…And then a 2nd scan.

                    I felt OK after the 1st 3, but the last 2 suck- exhausted and major muscle/joint pain. I still may do the last 3…

                    • April 30, 2017 at 3:14 am
                    AB
                    Participant

                      Hello Lydia and everyone. I agree FEET should never have moles and foot moles have a history of metastasis.

                      my primary in Nov 2007 was a pencil point size mole on the top of my foot.

                      As a mother of twin 4 year olds, at the time, I immediately had it removed- wide margin and skin graft, sentinel node biopsy, PET/CT follow up Twice. All was clear. Other than being stressed out, it was nbd – was back running races in 6 weeks.

                      9 years later, I was told my 5+ month misdiagnosed running injury, was actually a plum size melanoma tumor in my foot and the PET/CT revealed 4 large tumors in the same leg, &  lymph nodes on the right and left hips with melanoma.

                      Please be vigilant! I did my research, visited 5 hospitals and chose to start with Keytruda- it had the least side effects of my options and allowed me to continue my active, executive, traveling, competitive athlete, uber mom, life as-is.

                      after 2 months I had a complete response and am NED. Merck's $$$$$ assistance program is great too!  Please let me know if I may assist you in any way. 

                      Much health, 

                      Andrea

                       

                      • April 30, 2017 at 2:54 am
                      AB
                      Participant

                        Thank you all for your help and direction! NED now what?????

                        I had a complete response after 3 Keytruda infusions- NED!

                        Will have 8 total infusions, and then a 2nd scan to solidify NED….unless someone on the site has a better plan.

                        Merck and my Dr., don't have enough Keytruda his tot to provide any real direction.

                        My side effects are very minimal…a little tired, hungry, and limited itch skin/scalp (not visibly different). Any other thoughts on staying on/ going off Keytruda.

                        Thanks,

                        Andrea  

                        • April 27, 2017 at 2:31 am
                        AB
                        Participant

                          Follow up : NED and felt great from 3/1- now!

                          I knew 2 weeks after my 1st infusion, on 2.3.17, that it was working. The ping pong sized lymph nodes on both sides of my hip/upper inside of leg had shrunk.

                          keytruda side effects have been minimal- can only do 2 hours of cardio band yoga daily- that's 1 less hour- I'm not as fast, a little achy at times and a little itchy.

                          3 infusions later- I'm NED. I had 5 tumors in my right leg the size between a plum and a tennis ball and they, as well as the lymph node cancer is all gone.

                          • February 28, 2017 at 3:32 am
                          AB
                          Participant

                            My dr couldn't care less about side effects, or how I feel

                            • February 28, 2017 at 3:31 am
                            AB
                            Participant

                              Great to hear you are fine now! I'm waiting for Dr. Jang to respond…usually takes 2-3 business days to get any response, and I'm always made to feel my call is an inconvenience. Even when I had 104 fever and couldn't breath or swallow, so I went to the ER…I put a call into another Dr for a new oncologist. 

                              • February 28, 2017 at 3:25 am
                              AB
                              Participant

                                I am having a terrible experience with him….no response, no advice or direction, Aloof, etc. Really loved Merrick Ross & Michael Wong at MD Anderson, and the teams at NIH and Sloan ( found Dr.Atkins extremely knowledgeable, but the sales pitch was too strong). 

                                • February 28, 2017 at 3:22 am
                                AB
                                Participant

                                  Thank you

                                  • February 28, 2017 at 3:21 am
                                  AB
                                  Participant

                                    Thank you so much! I put in a call this AM to Dr. Lipson.

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