MRF-Logo2019-Horizontal-RGB
Johnjk04
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.

Johnjk04

Forum Replies Created

Viewing 9 reply threads
1 2 3 … 16 17 18
  • Replies
      • November 15, 2021 at 12:57 pm
      Johnjk04
      Participant
        My bad, it’s: “ Everything’s Gonna Be Alright”.

        Someone better come on and tell, what is so ironic about this song and artist.

        • November 15, 2021 at 11:45 am
        Johnjk04
        Participant
          Christina D., maybe you can help me.
          Who was the artist that performed the song “ Everything is Going to be All Right”?
          • November 5, 2021 at 9:21 pm
          Johnjk04
          Participant
            Ladies, no reason to get down and out.

            In 2012, I had melanoma in pretty much every organ, brain and spinal cord.

            I had two craniotomy, with the surgeon removing twenty eight pieces of anything that resembled cancer.

            Never got the count, which were benign or malignancy. Also had three Gamma Knifes for some more brain tumors. I did have some bleeding in the brain.

            I received  the Ipi / Nivo treatment for two years. Nine years later, all has been wonderful.

            Put yourself with the best melanoma doctors and all should end up well.

            • October 11, 2021 at 9:58 am
            Johnjk04
            Participant
              Way to go Adam !!!
              • October 10, 2021 at 4:44 am
              Johnjk04
              Participant
                Christinad, yes it does feel nice. Had my brain MRI and CT scan last week. My oncologist is on a two month vacation (isn’t that crazy?). The office asked if I’d like to see a different oncologist, I told them I’d wait for two months (isn’t that crazy?).

                Christinad, your last scan day and oncologist visit will come as well. Just carry faith, hope and patience along with your journey.  Dr. Allison and Dr. Honjo, both made brilliant discoveries in immunotherapy. Their are plenty of scientists working now to make even more advanced revelations.

                May the peace of our Lord, Jesus Christ, keep you company. Christinad, you’ll be in my prayers !!

                • October 8, 2021 at 10:12 pm
                Johnjk04
                Participant
                  Christinad, I became NED, seven months into the trial.

                  I received sixteen treatments of Ipi / Nivo over the course of two years.

                  According to the trial’s protocol, I am not a full nor even partial responder. I had two brain tumors, six months into the trial.

                  So keep your faith and hope. This immunotherapy is one helluva treatment.

                  My trial was at Yale – New Haven (excellent, superb). I’ve moved to northern Arizona and the cancer care here is straight up lousy.

                  Just glad that it’s my last set of scans and also last oncology visit.

                  • October 8, 2021 at 5:21 pm
                  Johnjk04
                  Participant
                    Christinad, I know that you’re going through a tough time now. It will get better.

                    Jan. 2012, I had melanoma in the brain, both lungs, liver, kidney, gall bladder, left adrenal gland and spinal cord.

                    Two craniotomy, three Gamma Knife (brain) and the first clinical trial of ipilimumab and nivolumab did me well.

                    I have been NED a for nine years now.

                    Be patient, the immunotherapy takes it’s sweet time. Wishing you the absolute best.

                    • August 24, 2021 at 8:47 am
                    Johnjk04
                    Participant
                      Chris’ wife, I apologize if I come over as too cold or hard. I do hold myself to the same standards. During my sixteen treatments of Ippi / Nivo, I suffered plenty of adverse side effects.
                      During the lowest point on my melanoma journey, my marvelous , eighteen year old son died by suicide.
                      Melanoma at it’s absolute  worse, will never ever come close to the pain I felt at Kyle’s death. Once again, wishing the best for Chris and you.

                       

                       

                      • August 23, 2021 at 8:24 pm
                      Johnjk04
                      Participant
                        Chris’ wife, let’s hope that this reaction is a mute point in the future.

                        There are people that are no longer active on this sight, they were dealt a worse hand of cards than immunotherapy side effects.

                        Best wishes Chris and his wife, I’ll see both of you in my prayers !!

                        • August 20, 2021 at 10:00 pm
                        Johnjk04
                        Participant
                          During my second craniotomy, I developed a blood clot in my ankle. It was stabilized with an IVC filter. The clot was so large that it completely shut down my inferior vena cava. Took many years to have alternate veins develop.

                          January 2012 – melanoma in brain, both lungs, liver, kidney, gall bladder, left adrenal gland and spinal cord.

                          August 2012 – NED    Still riding the train. I’m very fortunate. No complaints.

                          MK, I wish for the same results for you. You will be spending some time in my prayers.

                          • November 8, 2024 at 5:44 pm
                          Johnjk04
                          Participant
                            Chris and Lucas, all of your words about Celeste were so thoughtful, caring and loving.
                            Thank you very much.
                            • November 8, 2024 at 10:56 am
                            Johnjk04
                            Participant
                              Cat, you are so welcome. Celeste was such a brilliant, caring, encouraging friend of so many people.
                              Cat, I have been in remission since August 2012. So big, big congratulations 🎊 to both of us.
                              Please don’t let cancer hold you prisoner. You beat it fair and square. Cat, you are the champion. Wake up every morning and put on your survivor tiara. You won.
                              Now go out and “keep living the dream”!
                              • November 6, 2024 at 10:17 pm
                              Johnjk04
                              Participant
                                Just want to apologize. With Cat’s assistance, Celeste only had two types of cancer.
                                She beat the melanoma with the first Opdivo trial.
                                Some years later, she was sadly given the adenocarcinoma of the appendix cancer.
                                With treatment, she went into remission. Sadly it did come back to her and took her life.
                                Sorry to mislead any of you.
                                Thanks Cat.
                                • November 6, 2024 at 7:58 pm
                                Johnjk04
                                Participant
                                  Okay the details Cat! Celeste’s nicknames are Les and Bubbles.
                                  Her husband is Brent or B as she liked to call him.
                                  Pretty sure they have one daughter and one son.
                                  Celeste was in the first nivo trial, I was in the first nivo / Ipi trial.
                                  So Celeste and me became buddies from this forum.
                                  I even dined with Celeste and Brent at Pepe’s Apizza, New Haven.
                                  Once I was ten years remission, I left this forum, cancer took enough of my time.
                                  Came up with an idea to have a celebration party for Dr. James Allison.
                                  MD Anderson has given us approval for an October 2025 party (it’s a surprise, shhhhh).
                                  Will get back to all 5 year Yervoy survivors later. I promise.
                                  So I reconnected with Celeste in August, to help plan the party.
                                  Celeste and I really enjoyed each other’s company.
                                  Her husband, Brent, knew about our special friendship and sent me an email with the devastating news.
                                  And now, you know the rest of the story.
                                  Glad that you are still living the dream, Cat. Congratulations 🎊!!!
                                  • November 6, 2024 at 6:53 pm
                                  Johnjk04
                                  Participant
                                    Cat, all of us are feeling an enormous amount of pain.
                                    I received an email from her this past August.
                                    Sadly Les was in the midst of her third different cancer.
                                    It’s called adenocarcinoma of the appendix.
                                    She did sign a no recitation form.
                                    No where in her email, did I get a sense that her life was closing down.
                                    All of us are so fortunate to have her in our lives.

                                    Les is a superstar ⭐️.

                                Viewing 9 reply threads
                                1 2 3 … 16 17 18