Kamoto

Take your pain meds. My rib pain was so bad, my blood pressure was 190 over 140. Ask for 15mg of morphine. I take as needed. But after being on Tagrisso targeted therapy for two weeks, my rib pain is non existent and I can stop the morphine. Morphine is a wonder drug at 15mg. I don’t even get itchy.

I finally had my 2nd opinion consult with Mayo Clinic today. The agree, Stage IV lung cancer, and agree with the Tagrisso drug plan of action. But they wanted to know why I had no plan in place for the Esophogeal Cancer which they with almost certainty is NOT an EGFR mutation with lungs being the source. Unfortunately there are ZERO drugs which I can take for both Lung and Esophagus Cancer. So Esophagus treatment will not be surgical, as the tumor is at the junction of the stomach. And since I have a stage IV lung cancer, no surgeon will agree to remove the Esophagus tumor. So Chemo is most likely to be recommended for the Esophagus tumor. I don't think I want that. I'm doing so well on Tagrisso, with zero side effects. Two weeks in now, and my rib pain is gone where before Tagrisso the pain was so bad it sent me to the ER. I'm not getting rid of stage 4 cancer with Tagrisso. So why bother to also try and attack the 2nd cancer I have. I'm inclined to live well, on Tagrisso, and when the Esophageal cancer goes stage 4, let it take me. Mayo is formulating their plan, up to me if I want to sign on to it. I don't think I have the will to experience Chemo. My mother did, and it just ruined her last six months of life.

Interesting that your NHS guidelines are Gefitnib. Are you wealthy at all? I take Tagrisso, but it costs insurance providers $16,600 a month. Astra Zeneca is a British company I thought so your NHS must get a good price. Like others have pointed out, Tagrisso is 3rd gen drug. Seems like it’s working, but ask why she can’t take Tagrisso

Was supposed to start on Friday, but I was a bit scared. Took me until Monday July 4th to get the courage. My co-pay ended up being $16.60 a month, which was then picked up by Astra Zeneca as part of their 20,000 per year in financial help to those on the drug. So overall cost to me is $0.00. Overall I don't feel much. Either I haven't had time to build up enough of the drug in the blood stream, or this targeted therapy stuff is pretty ingenious. My allergies have kicked up, so that could be the cause of my drowsiness, but I'd like to see how I feel with zero allergies acting up. I took it at 11:30 PM, so that I could sleep through the side effects which is was the Cancer Center Pharmacist suggested. I have follow-up blood testing in a week. My heart looked great for 57 when they did the baseline Echo Cardiogram.

16 grand a month. I’m hoping Blue Cross Blue Shield of CA covers it. Otherwise anyone got some they can loan me. 🤪

No Susan it isn't. Now I wait again for the bio marker for the Esophagus tumor. Karen, once I see the result posted to my Sanford Chart I'll let you know. So I'm getting my data from here. https://www.tagrissohcp.com/efficacy/metastatic-nsclc-efficacy.html. The data from the trials show at 3 years, 54% of TAGRISSO patients and 44% of EGFR-TKI comparator patients were still alive. So makes sense when you say some are on it for years and years. I hope I react well to be in the survival group. Does anyone Tik Tok their adventures? I'm 57 but very computer savvy, and I've been documenting my adventures on Tik Tok. I'm getting about 800 views of videos which isn't bad for an old guy. I think I need to shed a tear or two to break into the thousands of views

So the bio marker is back. I’m EGFR. So oncologist wants to start Tagrisso. This isn’t chemo, and it isn’t immunotherapy. However it’s toxic after a year and the cancer figures a way around Tagrisso anyway. So this seems like just a delay mechanism. Another complication came in after endoscopy. I have a fairly large esophageal tumor right before it enters the stomach. Lung is rare to metastasize to esophagus. So this possibly means two origin cancers are present. Huh? How can that be. They will send for mutation testing as well just in case it is the same cancer.

I see the local oncologist on Monday. Mayo is pretty adamant, no treatment though which isn't authorized by them. I guess this would eliminate me from any drug trials. My tumor score in the lung was 5%. So maybe that is why I'm not high priority on the list. That seems to be a good thing.

Oncology called me. July 16th is my initial appointment. Sheesh, I'm thinking I'll be dead by then. They prioritize appointments based on the case, so either I'm not so bad, or I'm a goner soon. I know these hospitals want those foreign cash payments, but why do we have to share out healthcare system with the rich around the world? Really irritates me to read Tik Tok people critical of US healthcare, when the elite of their society run to the US whenever they need a complex procedure.

Biomarker is HER2 w Breast scoring negative. I have lung adenocarcinoma with HER2 biomarker. That is why breast score is negative. Only 2% of lung adenocarcinomas are HER2. There is a drug called Enhertu which has been approved recently. Pneumonitis is one deadly side effect. I have PD-L1: Expression I don't have Pan-TRK: not expressed.

Well, I lit up that PET scan. It’s everywhere. Esophagus, nasal cavity, vertebra, ribs, brain with the original lung cancer. I’m guessing I don’t make six months. What can you do. Thanks everyone for the well wishes. I’ll keep ya posted.

Hi All, had my brain MRI today. Results came quick and were not good. Solitary 6 MM enhancing metastasis within the right frontal lobe (16/101) without apparent mass effect. Some other interesting inputs. Couple punctate nonspecific FLAIR hyperintensities in the cerebral white matter. Sounds like I'm also a candidate for stroke, dementia based on those secondary findings. Tomorrow is the PET scan. I have a feeling I'm going to light that up, as my Doc wants to know whats on my gallbladder, liver and my spine. Oh well, what can you do. Once this is done and I get my bio marker results, I guess I'll see what an Oncologist says.

Invasive adenocarcinoma. Poorly differentiated stage 3. A1-3 Thyroid transcription factor is positive. Doc thinks it might be an EGFR mutation they are seeing after COVID in non smokers. You can slow this but the cancer mutates around the current drug from astra Zeneca. The side effects of the immunotherapy drug for NSCLC adenocarcinoma sound worse than the cancer. Decisions decisions.

Missed the call from oncologist. I’ll know tomorrow morning at 8. Biopsy was no issue. Didn’t even have much coughing when I woke up. Had one episode later in the day with a bit of blood but not as bad as they said it would be. Mowing the lawn has become so tiresome though. Out of breath fast

Pulmonologist tried to tell me I might have a lung infection or it could be cancer. Bronchoscope is Friday. He also pointed out a vertebrae issue which could be a tumor causing me the rib pain. Will keep you updated after biopsy. In case I need it, found a great Oncologist at Mass General.

Thanks Cornelia. We sound like the same family heritage. Italians don’t have heart issues, we don’t have high BP, no cholesterol, but cancer loves us. My mother has seven brothers and sisters. Of the eight, six have died of cancer with two still alive. My mom smoked till she was 40, then quit. Everyone else smoked and loved their Pall Malls. I don’t smoke cigs, but I’ve been a cigar smoker since I was twenty two. Maybe one a month on average. Keep me posted and I’ll do the same. Chin up. Ken

Thanks Tom. I agree. I left Stanford Medical where I had a virtual colonoscopy in 2017. Most people still don’t know it exists. I’m from Boston. I haven’t lived there since 1996 but have a massive Italian family there. I’m inclined to move back, and have the oncology team at Mass General be in charge. I’m a permanent home worker these days as Silicon Valley has embraced virtual work. If it’s not so bad, maybe I’ll let Mayo Clinic be my team as that’s a short flight. Used to live in Scottsdale AZ right up the street from the Mayo Clinic there. My daughter is doing her Masters as a Nurse Practioner at the U of Alabama Birmingham, so that’s also an option. Everyone is shocked when I tell them UAB has a top 25 medical school.

Thanks Justin. The pain on opposite side had the Doctors stumped as well. Human anatomy is amazing. Stay strong and I’ll update after meeting tomorrow.

I had COVID in Jan of 2020. X-ray of lung showed pneumonia but no lung mass. About two years ago I moved to the Rocky Mountains. Was short of breath at times and thought it was altitude. It never went away. I went in recently to the ER with left side chest pain and they didn’t know why. My BP was 196 over 114. They did a Chest xray and right lung had a mass. So they ordered a CT scan. I have a right paratracheal and hilar adenopathy consistent with metastasis. Largest node is right paratracheal which measure 1.9 cm. I have a 3.1 x 2.3 speculated mass in in right upper lobe w tagging of adjacent pleura. A continuous band like opacity extends inferioly toward right minor fissure. Couple punctuate nodules left lower lobe and right lower lobe. Subcentimeter subtle focus of enhancement adjacent to gallbladder fossa. Medial limb of left adrenal gland is upper limits of thickness. Meet with pulmonologist was set for 26th of this month but they called and said I must come in Monday. That’s not good at all. Grandmother died of lung cancer, mom died of colon cancer. Both by 65. I’m 57. Don’t have much hope, but I’ve been preparing for years that cancer was coming. Any thoughts on the CT scan?