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MK3475 (PD1) Experiences
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MK3475 (PD1) Experiences

› Forums › General Melanoma Community › MK3475 (PD1) Experiences

  • Post
    • May 11, 2014 at 1:55 pm
    cbs805
    Participant

      Interested to hear how patients are doing on expanded access PD1.  My husband has had chemo, surgeries, radiation, Cyberknife, 2 rounds of ipi and now 2 doses of PD1.  After first dose his LDH was lower and he has been feeling better than he has in a year.  He was diagnosed in April 2013.

    Viewing 8 reply threads
    • Replies
        • May 11, 2014 at 5:16 pm
        arthurjedi007
        Participant

          2 doses of the expanded access PD1 and he is feeling better is good news for me to hear. I've really been worrying about this EAP but for me I see it as my only choice at this time so to hear good news from it is a blessing. I'm waiting on the call for when I'm supposed to start it. Either this coming week or next week but not sure yet. I'll try to update the forum how it turns out.

           

          • May 11, 2014 at 5:16 pm
          arthurjedi007
          Participant

            2 doses of the expanded access PD1 and he is feeling better is good news for me to hear. I've really been worrying about this EAP but for me I see it as my only choice at this time so to hear good news from it is a blessing. I'm waiting on the call for when I'm supposed to start it. Either this coming week or next week but not sure yet. I'll try to update the forum how it turns out.

             

              • May 12, 2014 at 6:11 pm
              cbs805
              Participant

                We go to the Beverly Hills Cancer Center, Dr. O'Day.  John, my husband doesn't have any tumors that can be felt so we won't know for sure what is happening until his scans in July.  Hope all goes well for you.   Very grateful for this drug. 

                • May 12, 2014 at 6:11 pm
                cbs805
                Participant

                  We go to the Beverly Hills Cancer Center, Dr. O'Day.  John, my husband doesn't have any tumors that can be felt so we won't know for sure what is happening until his scans in July.  Hope all goes well for you.   Very grateful for this drug. 

                  • May 12, 2014 at 6:11 pm
                  cbs805
                  Participant

                    We go to the Beverly Hills Cancer Center, Dr. O'Day.  John, my husband doesn't have any tumors that can be felt so we won't know for sure what is happening until his scans in July.  Hope all goes well for you.   Very grateful for this drug. 

                  • May 11, 2014 at 5:16 pm
                  arthurjedi007
                  Participant

                    2 doses of the expanded access PD1 and he is feeling better is good news for me to hear. I've really been worrying about this EAP but for me I see it as my only choice at this time so to hear good news from it is a blessing. I'm waiting on the call for when I'm supposed to start it. Either this coming week or next week but not sure yet. I'll try to update the forum how it turns out.

                     

                    • May 12, 2014 at 1:28 pm
                    sweetaugust
                    Participant

                      I'm 1.5 years into MK-3475 and doing great!  I no longer have progressive disease and have almost no evidence of disease as all but one spot have cleared up.  That last bad lymphnode seems to almost be back to normal size though…so all going in the right direction.  Still working fulltime and living a basically normal life.  Feeling good and happy to be here appreciating each moment.  🙂

                      Much luck to you!

                      Laurie

                        • May 12, 2014 at 2:20 pm
                        killmel
                        Participant

                          Laurie,

                           

                          Did you ever discussed with your doctor that if you stopped the trial, then you had a recurrecnce, that you would be able to get back on the trial?

                          What is Merck policy about stopping the trial after 2 yrs then wanting back on the trial because of disease progression?

                          • May 12, 2014 at 3:09 pm
                          sweetaugust
                          Participant

                            I don't actually see my doctor again until after I scan again in mid June.  Until then, I just see my nurses for my treatments.  We will look at my scan results and then I will ask again about Mercks rules on stopping the trial after 2 years, and the ability of getting back on the treatment if it starts growing again.

                            • May 12, 2014 at 3:09 pm
                            sweetaugust
                            Participant

                              I don't actually see my doctor again until after I scan again in mid June.  Until then, I just see my nurses for my treatments.  We will look at my scan results and then I will ask again about Mercks rules on stopping the trial after 2 years, and the ability of getting back on the treatment if it starts growing again.

                              • May 12, 2014 at 3:09 pm
                              sweetaugust
                              Participant

                                I don't actually see my doctor again until after I scan again in mid June.  Until then, I just see my nurses for my treatments.  We will look at my scan results and then I will ask again about Mercks rules on stopping the trial after 2 years, and the ability of getting back on the treatment if it starts growing again.

                                • May 12, 2014 at 2:20 pm
                                killmel
                                Participant

                                  Laurie,

                                   

                                  Did you ever discussed with your doctor that if you stopped the trial, then you had a recurrecnce, that you would be able to get back on the trial?

                                  What is Merck policy about stopping the trial after 2 yrs then wanting back on the trial because of disease progression?

                                  • May 12, 2014 at 2:20 pm
                                  killmel
                                  Participant

                                    Laurie,

                                     

                                    Did you ever discussed with your doctor that if you stopped the trial, then you had a recurrecnce, that you would be able to get back on the trial?

                                    What is Merck policy about stopping the trial after 2 yrs then wanting back on the trial because of disease progression?

                                  • May 12, 2014 at 1:28 pm
                                  sweetaugust
                                  Participant

                                    I'm 1.5 years into MK-3475 and doing great!  I no longer have progressive disease and have almost no evidence of disease as all but one spot have cleared up.  That last bad lymphnode seems to almost be back to normal size though…so all going in the right direction.  Still working fulltime and living a basically normal life.  Feeling good and happy to be here appreciating each moment.  🙂

                                    Much luck to you!

                                    Laurie

                                    • May 12, 2014 at 1:28 pm
                                    sweetaugust
                                    Participant

                                      I'm 1.5 years into MK-3475 and doing great!  I no longer have progressive disease and have almost no evidence of disease as all but one spot have cleared up.  That last bad lymphnode seems to almost be back to normal size though…so all going in the right direction.  Still working fulltime and living a basically normal life.  Feeling good and happy to be here appreciating each moment.  🙂

                                      Much luck to you!

                                      Laurie

                                      • May 13, 2014 at 12:18 pm
                                      Tina D
                                      Participant

                                        I am not in the eap, but have been in the Merck trial since end of July 2013. Have had an 83% response thus far. Feeling well most of the time aside from symptoms caused by adrenal insufficiency and hypothyroid ( side effects from this and prior treatments)… these are easily treated with meds. 

                                        Tina

                                        • May 13, 2014 at 12:18 pm
                                        Tina D
                                        Participant

                                          I am not in the eap, but have been in the Merck trial since end of July 2013. Have had an 83% response thus far. Feeling well most of the time aside from symptoms caused by adrenal insufficiency and hypothyroid ( side effects from this and prior treatments)… these are easily treated with meds. 

                                          Tina

                                          • May 13, 2014 at 12:18 pm
                                          Tina D
                                          Participant

                                            I am not in the eap, but have been in the Merck trial since end of July 2013. Have had an 83% response thus far. Feeling well most of the time aside from symptoms caused by adrenal insufficiency and hypothyroid ( side effects from this and prior treatments)… these are easily treated with meds. 

                                            Tina

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