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- May 28, 2021 at 8:23 pm
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,also here is the schedule I will be on.
htttps://clinicaltrials.gov/ct2/show/NCT04423029In 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.Screening6/15/2021TuesdayBiopsy, Main lab, Diagnostic EKG, CTRC lab, CT Scan/MRI, Clinic Follow UpC1D-16/21/2021MondayInpatient AdmissionC1D16/22/2021TuesdayIn patient AdmissionC1D26/23/2021WednesdayInpatient Admission dischargeC1D36/24/2021ThursdayMain lab, CTRC Coordination visit (6 hours), Clinic Follow upC1D56/25/2021FridayMain Lab, CTRC lab (30 mins), Clinic Follow upC1D86/29/2021TuesdayMain Lab, CTRC coordination (1 hour), Clinic Follow upC1D157/6/2021TuesdayMain Lab, CTRC lab (30 min), Clinic Follow up, BiopsyC2D17/20/2021TuesdayMain Lab, Clinic Follow Up, CTRC (6 hours)C2D37/22/2021ThursdayMain Lab, CTRC Lab (30 mins), Clinic Follow UpC2D87/27/2021TuesdayMain Lab, CTRC lab (30 mins), Clinic Follow UpC3D18/17/2021TuesdayDiagnostic Imaging, Main Lab, Clinic Follow up, CTRC (4 hours), BiopsyC3D38/19/2021ThursdayMain Lab, CTRC Lab (30 mins), Clinic Follow UpC4D19/14/2021TuesdayMain Lab, Clinic Follow up, CTRC (4 hours)C4D39/16/2021ThursdayMain Lab, CTRC Lab (30 mins), Physician Follow UpC4D59/18/2021FridayCTRC Lab (30 mins)C4D89/21/2021TuesdayCTRC Lab (30 mins)C4D159/28/2021TuesdayCTRC Lab (30 mins)input for questions to my oncologist would be greatly appreciated
Angel Hugs and Love
Trent
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- May 24, 2021 at 9:10 pm
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 -
- March 4, 2021 at 6:08 pm
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. ❤️-
- March 6, 2021 at 12:29 pm
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.
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- February 7, 2021 at 6:43 pm
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 luckTrent
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- November 30, 2020 at 3:54 pm
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 -
- May 27, 2021 at 8:00 pm
EdThe 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
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- November 22, 2020 at 3:36 pm
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 -
- November 19, 2020 at 3:30 am
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. -
- November 19, 2020 at 2:58 am
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.