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Lilara
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Lilara

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      • December 27, 2020 at 9:08 pm
      Lilara
      Participant
        My mom is being treated at SunnyBrook as well. I would ask about medication for BRAF. They work pretty well for a while . My mom does not respond to keytruda or pembo. So I have asked for combination therapy ipi/nivo and province denied it because she started with mono therapy . I have even offered to pay for one treatment but they are very slow in making the decision and put her on it . I am not having a good experience with Sunnybrook. I am so worried about my mom and I feel like they are taking their time. I hope your have a better experience. Hope she can tolerated the targeted therapy and works . It is very hard time. I totally understand how you feel .

        Lila

        • December 27, 2020 at 4:26 am
        Lilara
        Participant
          I am sorry to hear about your diagnosis. My mom has also stage 2B in September 2017 and in April 2017 stage 4. You need to make sure they do the pet scan or ct scan every 6 months . In my mom case they just look through her skin no ct scan was done . I wish I knew this before . They did not have that as part of their protocol since she has a negative snlb.

           

          • December 27, 2020 at 4:13 am
          Lilara
          Participant
            Hi, I am sorry to hear this about your mom. My mom is  in the same situation and she was also put on pembo. But it is progressing . We are in Canada too. Which hospital do you go to ? There are more clinical options but I am not sure if she can handle that. Also she can try ipi and nivo which the province won’t pay since she has not started on it . But that is also immunotherapy. So might not be the best option. I am also new to this , there are many members here with experience and might direct you to the right direction. If she is braf positive then targeted therapy might work for her . My mom is not braf positive she has Nras mutation.
            Thanks
            • August 10, 2021 at 7:53 pm
            Lilara
            Participant
              Thanks for putting this article . Very interesting

               

              • August 10, 2021 at 7:48 pm
              Lilara
              Participant
                The oncologist did a test and found out that my mom has NRAS mutation.

                thanks

                • August 10, 2021 at 7:47 pm
                Lilara
                Participant
                  Thanks Mark for your advice . I will find out about this trial more . But I am still thinking maybe my mom should try the ipi nivo combo and might work before considering the trial.
                  • February 1, 2021 at 10:05 pm
                  Lilara
                  Participant
                    Thanks Mark for your response . My mom was on keytruda but the tumors were not shrinking so the dr is looking at her tumor to see if she is eligible for pd1 and lag3 , since she was denied ipi/nivo

                    but now at her biopsy they have found extensive necrosis . So we will see the dr on Thursday. So I hope the cancer cells are dying . But I don’t know why her tumor is growing :-(. Thanks for your response . I am praying all the time so that she can have something that works for her .

                    Lila

                    • November 27, 2020 at 2:05 am
                    Lilara
                    Participant
                      Thank Ed for this great article . Yes I will use that . But now I think the Ontario government only approve ipi/nivo on native treatment not as a second line . I wish the oncologist would tell us that . She gave keytruda and now we only have ipi as a second line . I have seen articles about low does of ipi and pembonor nivo and we might just get the pembo with low does of ipi and pay for low does ourselves . Do you know about clinical trails in USA that have ipi/nivo for second line treatment ?
                      Thanks
                      Lila
                      • November 26, 2020 at 3:13 pm
                      Lilara
                      Participant
                        Happy Thanksgiving to you and I am thankful for your answer . I am glad that you are NED .
                        • November 26, 2020 at 3:11 pm
                        Lilara
                        Participant
                          Thanks Ed for your response . I think low does of ipi and nivo could work better as well. I have requested from another hospital for second opinion but in Canada it takes too long .
                          • November 26, 2020 at 3:30 am
                          Lilara
                          Participant
                            Hi, I just read your post . I hope you are doing well. My mom is also the same situation as you. We are in Ontario and my mom progress on Keytruda . My oncologist wants to start me her on ipi only . I have suggested ipi/nivo combo but she is saying too much side effect . So I told her about Keytruda and low does of ipi after all the research and she said they do not cover it . So I would like to know the cost for low does of ipi if we want to pay it privately .
                            Please let me know and also how it worked for you.
                            Thanks
                            • November 24, 2020 at 3:32 am
                            Lilara
                            Participant
                              Hi Mark ,
                              Thanks for your advice and providing the doctor information:
                              Unfortunately, my mom has to be in USA to be seen by the doctor . In Canada the oncologist wants to try ipi by itself . Even though I think ipi and nivo will
                              Work better and according to dr Weber ipi1 mg and nivo 3mg might get rid of the side effects . I do not know what to do really . I have called john Hopkins and they told me they can’t see patient outside of Maryland .
                              Thank for your message
                              • November 24, 2020 at 3:28 am
                              Lilara
                              Participant
                                Hi Mark ,
                                Thanks for your advice and providing the doctor information:
                                Unfortunately, my mom has to be in USA to be seen by the doctor . In Canada the oncologist wants to try ipi by itself . Even though I think ipi and nivo will
                                Work better and according to dr Weber ipi1 mg and nivo 3mg might get rid of the side effects . I do not know what to do really . I have called john Hopkins and they told me they can’t see patient outside of Maryland .
                                Thank for your message
                                • November 22, 2020 at 3:32 am
                                Lilara
                                Participant
                                  Thanks Mark for sharing this information. I think TVec and Pembrolizumab might work , but in Canada they don’t offer it . Do you mind sharing the doctor information for the second opinion for tvec even though he might be in USA
                                  Thanks
                                  • November 22, 2020 at 3:30 am
                                  Lilara
                                  Participant
                                    Thank you for sending this information. I have also talked to Dr Weber and he suggested ipi nivo flip does in order to get lower side effect . Ipi 1mg and nivo 3
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