MRF-Logo2019-Horizontal-RGB
sks2019
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.

sks2019

Forum Replies Created

Viewing 5 reply threads
1 2 3 4 5 6
  • Replies
      • October 1, 2020 at 4:11 am
      sks2019
      Participant
        Good Luck Trent ! Hope IPI/Nivo is killing it .
        • September 23, 2020 at 8:42 pm
        sks2019
        Participant
          Thank you everyone with all your advice and thoughts ! grateful to hvae this group by my side.
          • September 22, 2020 at 6:45 pm
          sks2019
          Participant
            You are a true warrior. More strenght and healing to you Mike ! Reading your posts gives me strength to fight this for my mom. Sorry for the suggestion but I would recommend you change your name from MelanomaMike to FighterMike. Take that melanoma out of your name. Good Luck
            • August 20, 2020 at 8:51 pm
            sks2019
            Participant
              Sorry didnt wanted to post as Anonymous
              • February 25, 2020 at 7:43 pm
              sks2019
              Participant
                thank you Mike for posting, I have been waiting for your post and praying you were doing ok but knew you must be having a tough time being absent from here.
                Glad that the big one is out. Wish you good luck and health.
                • February 24, 2020 at 6:03 pm
                sks2019
                Participant
                  Sorry I have no insights for you. My mom also has the same mutation but after talking to two oncologist found there is no targeted treatment for this mutation. So I dont know what benefits it adds knowing that you have a CDKN2A
                  • October 21, 2020 at 4:34 pm
                  sks2019
                  Participant
                    Thanks you Daisy028 , I had teh same thoughts. Thankfully her appetite is ok and her feeding tube is also out now. Only issue right now is the strength. She has been in bed for more than a month and even sitting straight makes her tired. I am scared to bring her home looking at how much support she needs but i know she will be able to gain her strength much faster if she is home compared to a nursing facility which is not even allowing any visitors due to covid. Living isolated in a nursing faciity will make her more sick. Thanks for listening and getting back. Makes me feel better.
                    • October 1, 2020 at 4:09 am
                    sks2019
                    Participant
                      thanks for sharing the lovely thoughts Celeste , Looking at mom’s family and no one had melanoma , infact when she was diagnosed i googled “melanoma” .
                      when i searched for familial melanoma it came with the gene CDKN2A , which is what mom has . It says CDKN2A deep depletion. Terrified is a small word right now.
                      • September 10, 2020 at 4:45 am
                      sks2019
                      Participant
                        Its always so good to hear from you Mike , Good luck for the nerve block I hope it gives you releif. Keep up the spirits!!
                        • August 21, 2020 at 4:57 pm
                        sks2019
                        Participant
                          thanks Judi, He wants to do two cycles of carbo+taxol and repeat scan , objective is to reduce pain by shrinking the tumor and then start with a targeted treatment trial which is not yet available at UCSF and he working on to getting it approved at UCSF. I am looking for experienes with Carbo + taxol and to my surprise no one on this board has responded so I am thinking not many people go that route
                          • August 20, 2020 at 11:16 pm
                          sks2019
                          Participant
                            thanks Ed, you are always out there with your ears open . She was throwing up with oxycodone and on Norco now. I am concerned what lies ahead. Looking for how many folks here have had carbo +taxol successfully.
                            • July 30, 2020 at 7:43 pm
                            sks2019
                            Participant
                              TimCT, There is another trial that my mom is considering after failing ipi/nivo here is the link. This is basically herpes virus injected into tumor with opdivo infusions. I am not sure if anyone here has tried this.

                              https://clinicaltrials.gov/ct2/show/NCT03767348?term=RP1

                              • July 8, 2020 at 8:58 pm
                              sks2019
                              Participant
                                Jackie, I dont know the person who is asking for TILs here but my heart feels so happy to read the help you have offered. This is the greatest empathy i have seen in mankind i my life ( I am only 38 yrs )
                                It just makes me feel how compassionate a stranger can be and I have also seen some blood relations been ____ ( I lost the word ) . Thank you and God bless you !
                                • February 8, 2020 at 1:06 am
                                sks2019
                                Participant
                                  Thanks Ed not sure what to make out of it. I am so down right now thinking about it. Ipi/nivo vs Niraparib. Niraparib is exploratory and Ipi/nivo showed only progression so far.
                                  • February 7, 2020 at 9:56 pm
                                  sks2019
                                  Participant
                                    Ed, It’s going to be Niraparib drug only . His thought process is to target the ATRX gene mutation which he thinks is targeted by Niraparib.
                                Viewing 5 reply threads
                                1 2 3 4 5 6