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Adenocarcinoma - newly diagnosed

Lung Cancer | Last Active: Jul 17, 2023 | Replies (164)

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@nonobaddog

Hi Sandy,
I was diagnosed with NSCLC one year before you(Feb 2022). Mine was stage 3B. I couldn't have surgery because it had spread from the lung tumor into two lymph nodes, one Hilar node and one Mediastinal node. But I did have radiation and chemo similar to your plan. The radiation I had was proton radiation though instead of photon radiation(x-rays). If that is an option for you I definitely would recommend it.
I had 6 weeks of radiation 5 days per week and 6 weeks of chemo 1 day per week over the same 6 week period. My chemo was same as yours, Carboplatin and Paclitaxel. You have to infuse the Paclitaxel first before the Carboplatin but they will know that. The first time I had a bad reaction immediately to the Paclitaxel. They had to stop it and give me some other meds and wait for 45 minutes so I could tolerate it and then it proceeded OK after that. The meds were just stuff like benadryl, famotidine, some steroid and Tylenol. For the following weeks they would just give me that stuff first and the whole series went well.
For side effects I was pretty lucky. They gave me prescriptions for anti-nausea drugs, Odansetron and Prochlorperazine, but I did not take any since I didn't get nauseated enough. They gave me quite a few sample bottles of Boost and Ensure in case I had trouble swallowing because of the esophagus reaction but I didn't have very much trouble with that either. I was able to eat chew-food the whole time. I did have fatigue from the chemo and a vague feeling that I wasn't "normal" during the whole six weeks and beyond but that fades away.
I did get an area of "sunburn" on my back in the later weeks of the radiation treatment since about two thirds of my radiation came in through the back and one third through the front. I couldn't reach it well but the techs here would put lotion on it for me so that wasn't too bad either and it faded over a few weeks after the radiation was over.
I did not lose my hair. I might have had more thinning but it was thinning before anyhow. It was impossible to tell if the thinning trajectory changed at all. I didn't try doing anything about hair so I am no help there.
I just finished one year of immunotherapy. Just a one hour infusion every four weeks. This drug was targeting my specific cancer genetic mutation and was much easier to tolerate than chemo. Just some fatigue which I hope will start fading away pretty soon.
During this last year I did lose my gallbladder but that was probably completely unrelated to the cancer or treatment. I also lost most or all of my thyroid gland function and that was caused by my immunotherapy drug. This happens to about 20 percent of patients taking that drug and I was one of them. In the big picture that is a small price to pay for the cancer killing protection of the immunotherapy.
Now I am all done with therapy and just have followup CT scans. These followup CT scans become extremely important to cancer patients. That is the only way you learn what good and what bad is going on inside you.

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Replies to "Hi Sandy, I was diagnosed with NSCLC one year before you(Feb 2022). Mine was stage 3B...."

Hi nonobaddog, as I sit here hysterical reading your message, it means so much to me to hear from you and how similar we are on this wretched road. Just having a really bad day today - just found out how much radiation and chemo will cost, so working to possibly get my insurance plan changed. Not only do we have to battle cancer, but all of the nonsense and monetary outlay that goes with it. Please tell me how people stay so positive throughout this? The onco and surgeon have still not ruled out surgery, but I'm not convinced it will happen, especially since I'm 77. I was curious about where they would target the radiation - front or back, but you had both? Did you have a port put in for the Chemo? My onco says I may not need one if they can get the vein - I figure I've got 2 arms and 2 hands they can look for veins without having to go thru surgery to have a port put in 🙁 I will also be on immunotherapy but not sure if onco mentioned after the chemo & radiation or after the surgery...I also have thyroid issues - had the left lobe removed about 50 years ago, so being on medication for life was no big deal for me. I'm so happy you are through it all and having your f/u CT scans. And thanks so much for sharing with me...you def made me feel better! (p.s. assume you have a dog? we have a little toy fox terrier named Pixie..she is now 12 and I swear she knows I have cancer)!