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.

THMoore

Forum Replies Created

Viewing 8 reply threads
  • Replies
      THMoore
      Participant
        How big were your lesions and are you on any treatment.  We’re you on treatment before you were diagnosed.
        THMoore
        Participant
          I appreciate everyone’s input. My confusion is I had 2. Complete responses and now I have a total tumor burden of the size of your index finger nail. I thought the oncologist would of put me on a clinical trial at a phase 2 level that had anywhere from a 10 to 40% success rate.  Here is a copy of the trial phase 1,

          https://www.prnewswire.com/news-releases/dragonfly-therapeutics-initiates-phase-12-study-of-its-il12-immunotherapy-in-patients-with-advanced-solid-tumors-301096938.html

          also here is the schedule I will be on.

          htttps://clinicaltrials.gov/ct2/show/NCT04423029
          In addition, please find below a sample schedule of visits required for the trial. This list is not comprehensive and final, but just for learning purposes. Starting Cycle 5, visits are just once per month. The CTRC is the outpatient research clinic.
          Screening
          6/15/2021
          Tuesday
          Biopsy, Main lab, Diagnostic EKG, CTRC lab, CT Scan/MRI, Clinic Follow Up
          C1D-1
          6/21/2021
          Monday
          Inpatient Admission
          C1D1
          6/22/2021
          Tuesday
          In patient Admission
          C1D2
          6/23/2021
          Wednesday
          Inpatient Admission discharge
          C1D3
          6/24/2021
          Thursday
          Main lab, CTRC Coordination visit (6 hours), Clinic Follow up
          C1D5
          6/25/2021
          Friday
          Main Lab, CTRC lab (30 mins), Clinic Follow up
          C1D8
          6/29/2021
          Tuesday
          Main Lab, CTRC coordination (1 hour), Clinic Follow up
          C1D15
          7/6/2021
          Tuesday
          Main Lab, CTRC lab (30 min), Clinic Follow up, Biopsy
          C2D1
          7/20/2021
          Tuesday
          Main Lab, Clinic Follow Up, CTRC (6 hours)
          C2D3
          7/22/2021
          Thursday
          Main Lab, CTRC Lab (30 mins), Clinic Follow Up
          C2D8
          7/27/2021
          Tuesday
          Main Lab, CTRC lab (30 mins), Clinic Follow Up
          C3D1
          8/17/2021
          Tuesday
          Diagnostic Imaging, Main Lab, Clinic Follow up, CTRC (4 hours), Biopsy
          C3D3
          8/19/2021
          Thursday
          Main Lab, CTRC Lab (30 mins), Clinic Follow Up
          C4D1
          9/14/2021
          Tuesday
          Main Lab, Clinic Follow up, CTRC (4 hours)
          C4D3
          9/16/2021
          Thursday
          Main Lab, CTRC Lab (30 mins), Physician Follow Up
          C4D5
          9/18/2021
          Friday
          CTRC Lab (30 mins)
          C4D8
          9/21/2021
          Tuesday
          CTRC Lab (30 mins)
          C4D15
          9/28/2021
          Tuesday
          CTRC Lab (30 mins)

          input for questions to my oncologist would be greatly appreciated

           

          Angel Hugs and Love

          Trent

          THMoore
          Participant
            Hi Christina,
            I was diagnosed March 1 2020 after 5 misdiagnoses. I had a lump pop up on my neck, and during surgery at MDA, it was determined I had melanoma of the Parotid gland. No skin cancer ever. So I am a Non Primary, and non V600. Anyway, fast forward to today one year later, I have had surgery, and 2 weeks after 30 grey of radiation, It was determined melanoma had spread to 5 nodes of my neck. Started NIVO immunotherapy and after 3 months, scans showed 5 nodes in my neck were clean but I gained 5 Non Active nodes in my lungs, and a 5CM Active tumor in my liver. Started IPI/NIVO and after the third infusion, developed colitis, dermatitis , arthritis, hypothyroidism and other things. Scans were ran in November of 2020 and I was told I had Stable disease. The 3 infusions basically almost killed me, but I was determined to finish the fourth dose, so in mid January of this year I did. WHEW. So I was rescanned a couple days ago and the oncologist explained, the following:
            Neck is clear, Brain is clear, Liver tumor is completely clear ( Prays GOD ) but the nodes in my lungs have grown too 6MM. The doctor was highly surprised but confused about my lungs. Tests were ran and it was determined I have severe inflammation from arthritis, DUH, I can’t even dress myself due to the pain.

            So in my case my liver tumor completely went away. Keep positive and fight the good fight

            Love and Angel Hugs,
            Trent

            THMoore
            Participant
              Thanks for the kind words Miss Bubbles. The PET SUV uptake in all 4 nodes was 1.5, which they say is very low and hopefully inflammation.   ❤️
                THMoore
                Participant
                  Miss Bubbles,

                  what scares me is the PET radiologist explained the growth of the lung nodes was probably due to metastasis.  They did explain they are confused because the size of the large liver tumor and all neck nodes were no longer cancerous.  The live tumor is there but they explained you can see the outline but everything else is transparent.

                  my question is can inflammation cause lung nodules to increase in size.  3 to 6 MM and 1 is 9 MM.  In the past they were always 3 MM.

                THMoore
                Participant
                  I got colitis after my third combo treatment. MDA did a colonoscopy and put me on infusions of vedolizumab once a month while I continue on immunotherapy. It literally stopped my issues in less then 24 hours. Haven’t had any issues since. Wished I had got it right away but the idiot local doctors wanted me on prednisone and anti diarrhea drugs. Cost me almost 7 weeks. Anyway, check it out. Good luck

                  Trent

                  THMoore
                  Participant
                    Evan;
                    You are a excellent son and your dad is proud. God bless and keep you!
                    Trent
                    THMoore
                    Participant
                      I’m so sorry for your loss. Your mom was a warrior. We all love you and know prayers and hugs will be with you and your family.

                      Angel Hugs
                      Trent

                      THMoore
                      Participant
                        Excellent Mike,
                        Get stronger and stronger. Love having you on line again. If I were there, I would race you in my wheelchair. Hugs and love to you.

                        Trent

                        THMoore
                        Participant
                          Mike,
                          When I was first diagnosed, I turned to this forum. I read hundreds of posts and noticed you had taken the time to answer and help almost every warrior possible. Me included. You and Bubbles are so important to all of us. I have always felt, that life is about giving, helping, and teaching others. You are the ultimate human being when it comes to those things. Please know, I along with numerous others love you from the bottom of our heart. May Angels surround you with their wings and hold you tight with feathered Hugs.

                          Sincerely with the utmost love,
                          Trent

                          THMoore
                          Participant
                            Ed

                            The lead oncologist at MDA just cAlled. 6 PM. He met with the entire oncology team to include De James Allison.  They have decided to place me on Phase 2 of (Dragonfly) or IL12 plus NIVO or KEYTRUDA. I have had great and complete responses with both IPI and NIVO. He explained that in theory. The IL12 should help. He explained the low burden in my lungs is a bonus. So off to study exactly what I’m going in to.

                            thank you for responding.

                            Trent

                            THMoore
                            Participant
                              Thx Mark,
                              The nodules in my brain , and neck appeared in May. 5 in my neck were positive. Started NIVO and in August, only 2 were active but 5 nodules appeared in my lungs and 1 in my liver. Only the liver was active. Now, nothing has disappeared but only the liver is active. The Pet scan list the nodules as treated disease. Again leaving just the liver as active but haven’t grown since July. So all the nodules to include my neck never disappeared. They just no longer show cancer. I am hoping for the best and I am waiting to find out if I can take the last dose. It depends on if I have colitis or not. I am hoping it’s just inflammation. Thanks Mark. Trent
                              THMoore
                              Participant
                                Thx Miss Daisy for the advice. I will surely ask the Dr about Leukine. As for Colitis, I am being tested for it this up coming week. They don’t think I have it, but I do. The scans also show inflammation in my colon. I think they are just looking at the final analysis of the scans and not reading the details.
                                THMoore
                                Participant
                                  Thx for the information. The Dr at MDA just said my disease was considered stable. He would not provide additional information other then let’s continue with immunotherapy. I asked about contingency plans and again, no information was provided other then let’s wait until early March scans.
                                  THMoore
                                  Participant
                                    Thank you Miss Daisy. Excellent article. Hugs.
                                Viewing 8 reply threads