jack14

Update: I have received nine tri-weekly infusions (paxel / Carbo), and my scan results have revealed no evidence of disease! I am now on a monthly physical exam. My Oncologist says that I could remain clear for months or years. My prayers are for all of us to beat this horrific disease.

Hi Michelle Sorry, I missed this until this evening when I decided to check in. I am still skeptical, and hesitant to try it. But, if I run out of conventional options…..

Just saw the results from my last CT scan: IMPRESSION: Radiation changes in the left upper lobe No evidence of recurrent or metastatic disease. My blood labs however revealed a lower platelet value, of 86. I see my Oncologist later today and suspect that she will probably take me off the Taxol Carboplatin for a month?

And there’s the Joe Tippen Protocol (fenben). Well worth looking into IMO.

Glad to hear that! I had to stop taking it because it caused bilateral pneumonitis. I was experiencing shortness of breath with mild exertion, like walking short distances. I bought a pulse oximeter from Amazon to keep an eye on my oxygen levels and it was dropping into the lower eighties! I ignored it as I was scheduled to get an oxygen needs evaluation through the VA. Anyway, I went to see my oncologist to get my check up and after I walked in with the nurse from the waiting area to the exam room, I was breathing so much that she sat me down and went to get my doctor. They were in a near panic, and ordered an emergency CT scan! They were thinking, PULMONARY EMBOLI. I sure was hoping not. That is a killer. The staff in the cancer center stayed past closing to take care of me. The results of the scan ruled out a PE, or an exasperation of my disease. It did reveal significant bilateral pneumonitis. The Tabrecta, which was helping to reduce my tumors, was immediately discontinued. I was given steroids and allowed to go home. I was given a healthy dose of steroids and slowly got my breath back, thank the Lord. So watch her breathing, and notify her doctor right away if it worsens. Good luck, and I hope it doesn’t give you guys any trouble.

So sorry to hear that. I remember how I felt hearing that I had stage 4 adenocarcinoma NSCLC. That was a bit over two years. I had immunotherapy, target therapy, and now chemotherapy. I would get a second opinion if I got anything I didn’t like in regards to the treatment plan. I have been told to find a “comprehensive cancer” center if possible, as they typically get better results than those who lack that designation. Immunotherapy and targeted therapy is a game changer for many of us! Trials are also a promising bet, as I have been told. I think it’s also a wise idea to ask about palliative care to be added to the plan. Last of all, I am getting my fifth chemotherapy infusion (three months so far), as I am typing. It has not been that bad, hair loss and fatigue for a few days after my infusion. They have found ways to eliminate the agony many experienced in the past, so if they offer it, it’s worth trying. You can also halt it at any point. Lastly, I would ask for a panel of genes from Foundation One to reveal any targetable gene mutations, if you haven’t gotten this information yet. It needs doing before any treatment. Good luck to both of you!

It sure helps me sleep when I have insomnia. That’s a big plus for me. As for curing cancer, I am skeptical.

I should know soon. I’m going to try the trial sample next week.

I want to try the Rick Simpson Oil regimen too. The oil counters the side effects of chemo too, as I understand it. Nausea and insomnia in particular.

The immunotherapy drug keytruda worked for almost two years. Then the Tabrecta was working for a couple of months and then it began causing lung problems. Bi-lateral pneumonitis and almost did me in. So, now I am in chemotherapy and so far no real bad issues. Second round this week.

Thank you Tom I just saw this... duh Not on top of things lately staying the course! thanks and apologies again

I’m waiting for a VA home visit oxygen needs evaluation. Has anyone had one of these, or know someone who has? What can I expect? Sure hope it’s not involving any arterial blood gas draws. thanks

I have metastatic NSCLC and have been through immunotherapy and presently on hold after being on tabrecta. So, I am searching for another line of therapy before doing chemo.

https://www.amgen.com/newsroom/press-releases/2021/05/fda-approves-lumakras-sotorasib-the-first-and-only-targeted-treatment-for-patients-with-kras-g12cmutated-locally-advanced-or-metastatic-nonsmall-cell-lung-cancer