edivebuddy Posted February 21 Share Posted February 21 <--Interim treatment I'm so tired all the time. Food taste off when I eat it. Not really hungry with all that's going on. Plastic soup spoons take the metal taste away. So chopsticks are Japanese soup spoons it is. Luckily my house is full of both. Pants don't fit but sweats are fine. Need button up shirts to get over this tumor on my neck. Sleeping is not happening for longer than a couple of hour or so. Have to have my dressings changed on my neck . 2 Abdominal dressings last about 2 hours then drain . I have a beach towel as back up. September 20 2020 the results are in. Finally. Genetic testing results are in. They're for my brain tumors. All targetable mutations are negative. But my PD-L1 is 100% . My oncologist's says I've won the lottery and it's not often to our see 100%. What happened to the other biopsies? Pembrolizumab( keytruda) is the standard of care. Keytruda, Carboplatin and Alimta every 3 weeks for 4 to 6 treatments (minimum of 4) Then Alimta and keytruda maintenance for 2 years. This is where it's nice to personally know your second, in this case third opinion. He tells me as long as everything is going okay and I'm on the standard of care, it's going to be way better being treated here then going the 6+ hours down there. In 3 1/2 years my wife has driven me back and forth over 150 times. Oncologist, radiation oncologist, neurologist, neurosurgeon, dermatologist , ophthalmologist, PET Scans, CT scans MRI, infusions, fluids. That was just for the cancer. Moffitt would have been an EXTRA 92,400 miles driven. If it would have cost it would have been worth every penny. take a multivitamin that contains vitamin e. I also take Claritin (loratadine) every day for my Florida induced allergies. So with the retirement to Florida came year long allergies. Something is always blooming. These would become important and may have helped my treatment. At the time I did not know. https://www.mdanderson.org/newsroom/antihistamines-may-improve-immunotherapy-responses-study-finds.h00-159465579.html https://www.mdanderson.org/newsroom/study-finds-vitamin-e-can-boost-immunotherapy-responses.h00-159538956.html Up next Keytruda the vanquishor Marie002 1 Quote Link to comment Share on other sites More sharing options...
Marie002 Posted February 21 Share Posted February 21 Great post E. I'm 100% PD-L1 also and currently in remission. The Claritin is a surprising finding but I have a histamine problem and it may have been part of how my cancer got started. I don't think I am Keytruda qualified. I had durvalumab. I hope to chat more but busy today. Take care. Quote Link to comment Share on other sites More sharing options...
edivebuddy Posted February 23 Author Share Posted February 23 On 2/21/2024 at 5:41 PM, Marie002 said: The Claritin is a surprising They've known histamines were associated with cancer for a long time but not real how. Turns out that the tumor micro environment pumps out histamines which triggers dysfunction in HRH1 activated macrophages. So even if the PD1 PD-L1 oath were blocked these macrophages still didn't kill the cancer. So the H1 blocking anthistamines are thought to stop this dysfunction. Marie002 1 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted March 29 Share Posted March 29 @edivebuddy So, what happened next? It's been great to read your story. Obs, those dire prediction of "you have months to live" appear to have been inaccurate. That's pretty wonderful. The speed of the tumor growth is amazing! There are some other Keytruda folks hanging around here. When a targeted treatment works, it's truly a miracle. Quote Link to comment Share on other sites More sharing options...
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