MRF-Logo2019-Horizontal-RGB
Progress on combo
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Progress on combo

› Forums › General Melanoma Community › Progress on combo

  • Post
    • November 27, 2014 at 10:33 am
    rick1981
    Participant

      Hi all,

      After the Stage IV melanoma diagnosis in early June (2 days after our daughter was born), my wife has been put on the BRAF/MEK combo with immediate results: the skin lesions disappeared in days, the first scan in August showed a significant reduction in tumor load and in October the PET scan was fully negative. We had hoped to be on our way to NED or at least to have a long run on the combo.

      However, our MD called yesterday to let us know both LDH and plasma (experimental test to identify resistence against the combo) signal disease progress. We'll see him tomorrow and then have a scan early next week.

      But it seems like the combo only lasted 5-6 months (high LDH values apparently correlate to a short impact period of the combo) and we're on to immunotherapy.

      In principle that's not a bad thing, but it just produced a big dent in my wife's optimism and strength. She was convinced that with the combo, cannabis oil, supplements, yoga etc she would beat this thing against all odd. It's still possibly, but we'll have to move to Plan B and I'll do all I can to bring back her positivity and we'll keep fighting.

      Will keep you posted,

      Rick

    Viewing 8 reply threads
    • Replies
        • November 27, 2014 at 4:24 pm
        BrianP
        Participant

          So sorry Rick. Prayers to you and your wife. Very natural for your wife to feel down. I felt the same way when I progressed to stage IV after having made so many changes to diet and supplements. I know you guys will bounce back with immunotherapy. 

          • November 27, 2014 at 4:24 pm
          BrianP
          Participant

            So sorry Rick. Prayers to you and your wife. Very natural for your wife to feel down. I felt the same way when I progressed to stage IV after having made so many changes to diet and supplements. I know you guys will bounce back with immunotherapy. 

            • November 27, 2014 at 4:24 pm
            BrianP
            Participant

              So sorry Rick. Prayers to you and your wife. Very natural for your wife to feel down. I felt the same way when I progressed to stage IV after having made so many changes to diet and supplements. I know you guys will bounce back with immunotherapy. 

              • November 28, 2014 at 5:06 pm
              Jubes
              Participant

                Hi rick 

                hopefully this is just a quicker way to the immunotherapy which will really give her great results. 

                Wishing you both well

                jubes

                • November 28, 2014 at 5:06 pm
                Jubes
                Participant

                  Hi rick 

                  hopefully this is just a quicker way to the immunotherapy which will really give her great results. 

                  Wishing you both well

                  jubes

                  • November 28, 2014 at 5:06 pm
                  Jubes
                  Participant

                    Hi rick 

                    hopefully this is just a quicker way to the immunotherapy which will really give her great results. 

                    Wishing you both well

                    jubes

                    • November 28, 2014 at 7:40 pm
                    arthurjedi007
                    Participant

                      Maybe it isn't as bad as they think. If I understand right you were happy with the October PET scan. It is just recently the doc is worried because of the LDH and this new plasma test thing.

                      If so I remember talking to the clinical nurse at Sarah Cannon about LDH. She said last year they had 5 types of PD1 trials going and patients would have their LDH all over the place. Some with tumors shrinking were high LDH and vice versa. As a general rule high LDH is bad but like she said it can also mean the body is having a hard time taking out all the waste (ie destroyed cancer cells) thus high LDH.

                      Some docs can overreact and be rather stupid so if I were you I would try to keep doing what you were doing when you were convinced it was working good and hope the scans turn out better than they think.

                      Artie

                       

                        • December 1, 2014 at 9:33 am
                        rick1981
                        Participant

                          Thanks Artie, will keep calm until this week's PET scan and maybe the LDH is not such a bad thing after all. However, our MD is doing explorative research to determine whether cell-free DNA in plasma can predict the body's resistence moment against the BRAF/MEK combo:

                          http://swog.org/Visitors/Fall14GpMtg/TM/cfDNA-Kopetz-SWOG-TM-v2.pdf

                          And that one was more active as well…

                          Anyway, we've calmed down a bit 🙂 and hope that if there is indeed progress/growth, we can move to PD-1 quickly and that she is a responder!

                          Thanks all & good luck,

                          Rick

                          • December 1, 2014 at 9:33 am
                          rick1981
                          Participant

                            Thanks Artie, will keep calm until this week's PET scan and maybe the LDH is not such a bad thing after all. However, our MD is doing explorative research to determine whether cell-free DNA in plasma can predict the body's resistence moment against the BRAF/MEK combo:

                            http://swog.org/Visitors/Fall14GpMtg/TM/cfDNA-Kopetz-SWOG-TM-v2.pdf

                            And that one was more active as well…

                            Anyway, we've calmed down a bit 🙂 and hope that if there is indeed progress/growth, we can move to PD-1 quickly and that she is a responder!

                            Thanks all & good luck,

                            Rick

                            • December 1, 2014 at 9:33 am
                            rick1981
                            Participant

                              Thanks Artie, will keep calm until this week's PET scan and maybe the LDH is not such a bad thing after all. However, our MD is doing explorative research to determine whether cell-free DNA in plasma can predict the body's resistence moment against the BRAF/MEK combo:

                              http://swog.org/Visitors/Fall14GpMtg/TM/cfDNA-Kopetz-SWOG-TM-v2.pdf

                              And that one was more active as well…

                              Anyway, we've calmed down a bit 🙂 and hope that if there is indeed progress/growth, we can move to PD-1 quickly and that she is a responder!

                              Thanks all & good luck,

                              Rick

                            • November 28, 2014 at 7:40 pm
                            arthurjedi007
                            Participant

                              Maybe it isn't as bad as they think. If I understand right you were happy with the October PET scan. It is just recently the doc is worried because of the LDH and this new plasma test thing.

                              If so I remember talking to the clinical nurse at Sarah Cannon about LDH. She said last year they had 5 types of PD1 trials going and patients would have their LDH all over the place. Some with tumors shrinking were high LDH and vice versa. As a general rule high LDH is bad but like she said it can also mean the body is having a hard time taking out all the waste (ie destroyed cancer cells) thus high LDH.

                              Some docs can overreact and be rather stupid so if I were you I would try to keep doing what you were doing when you were convinced it was working good and hope the scans turn out better than they think.

                              Artie

                               

                              • November 28, 2014 at 7:40 pm
                              arthurjedi007
                              Participant

                                Maybe it isn't as bad as they think. If I understand right you were happy with the October PET scan. It is just recently the doc is worried because of the LDH and this new plasma test thing.

                                If so I remember talking to the clinical nurse at Sarah Cannon about LDH. She said last year they had 5 types of PD1 trials going and patients would have their LDH all over the place. Some with tumors shrinking were high LDH and vice versa. As a general rule high LDH is bad but like she said it can also mean the body is having a hard time taking out all the waste (ie destroyed cancer cells) thus high LDH.

                                Some docs can overreact and be rather stupid so if I were you I would try to keep doing what you were doing when you were convinced it was working good and hope the scans turn out better than they think.

                                Artie

                                 

                            Viewing 8 reply threads
                            • You must be logged in to reply to this topic.
                            About the MRF Patient Forum

                            The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                            The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                            Popular Topics