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1st post – If Keytruda doesn’t work..
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1st post – If Keytruda doesn’t work..

› Forums › General Melanoma Community › 1st post – If Keytruda doesn’t work..

  • Post
    • December 7, 2015 at 10:21 pm
    IvanaDim
    Participant
      Dear melanoma colleagues… I’ve been reading and learning so much from u all for months now, and you are amazing source of info and hope… Now this is my story..any advice is more than helpfull

      My father (59 years old) has metastatic melanoma, primary on rectum, spread to liver. The doctors recommended urgent surgery with which they removed the rectum and the lymph nodes that were affected with cancer cells. He has stoma bag now. The surgery was on July 2015.

      BRAF and C-KIT tests are negative.

      We are from Macedonia – small country on the Balkan with list of cancer drugs not updated for 8 years no, so immunoterapies are not available even if you can buy them out of your pocket! 🙁

      We managed to find immunotherapy keytruda in Greece (near my country 2h by car) and started keytruda in August. Since the immunotherapy is very individual and slow process, the oncologist can not guarantee anything at this stage. In october, before he takes the fourth dose he felt chest pain and the oncologist suggested CT scan to revise the situation. Unfortuntelly the liver metastasis seemed to be bigger and we did 2 chemoembolizations now. Last week he took the 6th dose of keytruda combined with DTIC.. Next is another chemoembolization. The dr is stopping with keytruda now..proceeding DTIC.

      I really need advice what to do next, all these drugs cost a lot of bank loans and selling assets so far, but it is all worth if it helps. I cant believe that there are no more options.

      Can anyone recomend some clinical trial that might be appropriate?

      Sorry for the long post….i had to share my pain with people that really understand..My father is my all..

      God bless you all…thank you for any advice in advance

      Ivana

    Viewing 5 reply threads
    • Replies
        • December 8, 2015 at 8:10 pm
        Fen
        Participant

          Ivana – I am so sorry to hear about your father and the difficulties you have in getting treatment.  I think if you go to the melanoma international foundation forum you will get more people who will be able to help.   Here is the link  http://melanomainternational.org/

          That group has a forum but it has people from many different countries who know what drugs are available and where.    I hope you find a solution that will help your father.

          Fen

          • December 8, 2015 at 8:10 pm
          Fen
          Participant

            Ivana – I am so sorry to hear about your father and the difficulties you have in getting treatment.  I think if you go to the melanoma international foundation forum you will get more people who will be able to help.   Here is the link  http://melanomainternational.org/

            That group has a forum but it has people from many different countries who know what drugs are available and where.    I hope you find a solution that will help your father.

            Fen

              • December 9, 2015 at 10:38 pm
              IvanaDim
              Participant
                Thank you for the recomendation…I wrote there and hopig for any pathway…

                Kindert regards!
                Ivana

                • December 9, 2015 at 10:38 pm
                IvanaDim
                Participant
                  Thank you for the recomendation…I wrote there and hopig for any pathway…

                  Kindert regards!
                  Ivana

                  • December 9, 2015 at 10:38 pm
                  IvanaDim
                  Participant
                    Thank you for the recomendation…I wrote there and hopig for any pathway…

                    Kindert regards!
                    Ivana

                    • March 16, 2018 at 10:15 am
                    rogan
                    Participant

                      Hi Ivana,

                      I just read your older posts and I am sorry to hear the situation with your dad.

                      We are also Macedonian and experience similar problem as you had. We have young –  very close relative with metastasis Melanoma and we have been recommended he starts with anti-PD1 therapy Keytruda / Opdivo.

                      As you know in Macedonia these drugs are not approved by the Government and Health Care, maybe in very limited sources as donations which are almost not accessible.

                      Paying the whole process privately is extremely expensive so we are also searching some information for a possible financial help or maybe clinical trials in Europe based on anti PD1 therapy for patients who are not from US or not EU members. 
                      I also read the  Financial assistance for Melanoma patience page through this web site, but those are related to US citizens.

                      Do you know some info about this or does anyone through this forum know something about it ?

                      As we are coming  from the same region and I guess having similar disadvantages I wondering if you want to share some of your experience with me would be very helpful? How can I get in touch with you ?

                      Thank you.
                      Rogan

                    • December 8, 2015 at 8:10 pm
                    Fen
                    Participant

                      Ivana – I am so sorry to hear about your father and the difficulties you have in getting treatment.  I think if you go to the melanoma international foundation forum you will get more people who will be able to help.   Here is the link  http://melanomainternational.org/

                      That group has a forum but it has people from many different countries who know what drugs are available and where.    I hope you find a solution that will help your father.

                      Fen

                      • December 9, 2015 at 3:07 am
                      BrianP
                      Participant

                        Ivana,

                        So sorry for your father's illness.  I just want to second Fen's recommendation about Melanoma International Foundation.  Katherine is pretty knowledgeable on international trials and has contacts that may be helpful to you.  She is very responsive to questions.

                        Brian

                          • December 9, 2015 at 10:42 pm
                          IvanaDim
                          Participant
                            Thank you for the recomendation…I wrote there and hopng for any pathway…

                            Kindert regards!
                            Ivana

                            • December 9, 2015 at 10:42 pm
                            IvanaDim
                            Participant
                              Thank you for the recomendation…I wrote there and hopng for any pathway…

                              Kindert regards!
                              Ivana

                              • December 9, 2015 at 10:42 pm
                              IvanaDim
                              Participant
                                Thank you for the recomendation…I wrote there and hopng for any pathway…

                                Kindert regards!
                                Ivana

                                • December 10, 2015 at 1:48 pm
                                tschmith
                                Participant

                                  I don't know if this is a possibility, but the National Institute of Health in Bethesda, Maryland offers clincal trials.  I have participated in one and it was cost free. They might have a trial that your father would qualify for.  A social worker would meet with you and go over financial details, etc.  People from all over the world are treated there.  I have to get ready for an appointment now, but can look for the contact information later today.  The care there is wonderful, however you must qualify for treatment.  I just wanted to toss that idea to you since.  Somehow I hope you can get help paying for these very expensive treatments.  

                                  Blessings to you!

                                  Terrie

                                  • December 10, 2015 at 1:48 pm
                                  tschmith
                                  Participant

                                    I don't know if this is a possibility, but the National Institute of Health in Bethesda, Maryland offers clincal trials.  I have participated in one and it was cost free. They might have a trial that your father would qualify for.  A social worker would meet with you and go over financial details, etc.  People from all over the world are treated there.  I have to get ready for an appointment now, but can look for the contact information later today.  The care there is wonderful, however you must qualify for treatment.  I just wanted to toss that idea to you since.  Somehow I hope you can get help paying for these very expensive treatments.  

                                    Blessings to you!

                                    Terrie

                                    • December 10, 2015 at 9:43 pm
                                    IvanaDim
                                    Participant
                                      Terrie, please share any contact info/links that you have…We have not many options, I would like to reach them . Thank you very very much!

                                      Greetings!
                                      Ivana

                                      • December 10, 2015 at 9:43 pm
                                      IvanaDim
                                      Participant
                                        Terrie, please share any contact info/links that you have…We have not many options, I would like to reach them . Thank you very very much!

                                        Greetings!
                                        Ivana

                                        • December 10, 2015 at 9:43 pm
                                        IvanaDim
                                        Participant
                                          Terrie, please share any contact info/links that you have…We have not many options, I would like to reach them . Thank you very very much!

                                          Greetings!
                                          Ivana

                                          • December 10, 2015 at 1:48 pm
                                          tschmith
                                          Participant

                                            I don't know if this is a possibility, but the National Institute of Health in Bethesda, Maryland offers clincal trials.  I have participated in one and it was cost free. They might have a trial that your father would qualify for.  A social worker would meet with you and go over financial details, etc.  People from all over the world are treated there.  I have to get ready for an appointment now, but can look for the contact information later today.  The care there is wonderful, however you must qualify for treatment.  I just wanted to toss that idea to you since.  Somehow I hope you can get help paying for these very expensive treatments.  

                                            Blessings to you!

                                            Terrie

                                          • December 9, 2015 at 3:07 am
                                          BrianP
                                          Participant

                                            Ivana,

                                            So sorry for your father's illness.  I just want to second Fen's recommendation about Melanoma International Foundation.  Katherine is pretty knowledgeable on international trials and has contacts that may be helpful to you.  She is very responsive to questions.

                                            Brian

                                            • December 9, 2015 at 3:07 am
                                            BrianP
                                            Participant

                                              Ivana,

                                              So sorry for your father's illness.  I just want to second Fen's recommendation about Melanoma International Foundation.  Katherine is pretty knowledgeable on international trials and has contacts that may be helpful to you.  She is very responsive to questions.

                                              Brian

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