edivebuddy

July 29th 2020 the real end of normal. The pandemic is on us. The new normal is not too bad. Spending a lot of time working on the yard. It's actually made life a little easier. They now get all my stuff and load it in my truck for me. l I built this Japanese bridge. Take a break and pull up some pompous grass before calling it a day. Well the pompous grass is hiding a nest of yellow jackets and they're real mad at me destroying their abode and hundreds let me know up close and personal. I'm allergic to ant venom and I guess wasps too. But I'll stick it out. I don't have an epi pen but the neighbor does. Later on something's not right. I'm light headed normal, but my head is pounding. And my blood pressure is sky high. 202 over 102. Off to the ER. They take my vitals and see me right away. The doc is asking questions and I can tell it's cancer related. Hey doc I'm here because I was stung by a bunch of wasps. Asks if I'm spitting up any blood. Yes. My BP is 205 over 101. I have a bloody nose and it's running down my throat. He orders a chest x-Ray. I tell him I don't have cancer. He's like we're going to check anyway. Get a covid test and nurse say you sure do have a bloody nose. But then the X-ray. There's a definite spot I see it and I'm stunned. Doc orders a chest CT and a head CT. I whisper to my wife I think I have cancer. I leave the ER with an appointment to have an MRI for Monday. Oncology and Pulmonologist on Wednesday. Monday after ENT who's going to do a biopsy Wednesday. How did this Guy know? Later I find out he's retired doing ER work and radiology between Denver and Jacksonville. Why was he in Pensacola? Biopsy on the 12th comes back adenocarcinoma of the lung. Not a surprise but still not ready. Haven't slept or eaten much at all. Having full on hallucinations. Talking to my dead relatives. At least I know it's not real. Where we stand. Thorax. Lymph nodes (lymphadenopathy) •3.9 x 4 cm Right supraclavicular • 3.1 x 3.6 cm Right paratracheal •2.3 x 3.9 cm. Right hilar •1.9 x2.6 cm Subcarinal Liver •8 mm Mass left lobe of liver •3 x 3 cm Cavitary lesion in the right upper lobe of the lung. May represent primary lung neoplasm. Brain •3.1cm right parietal •3.2cmRight occipital lobe (started at 5 mm) •3 mm Right Temporal •7 mm pineal cyst. Aug 12 biopsy Stage IV NSCLC Adenocarcinoma Prognosis 12 to 18 months Waiting for genetic testing to start treatment. 25 August 2020 • 1.1cm skin metastasis right neck. Prognosis Changed to 3 to 5 months. Time for some Xanax. I can see the tumor on my neck growing. It's bigger every time I look at it. It looked like a small pimple two days ago. Two weeks of waiting. Not that long really but when you know it feels like a whole lot of time being wasted. September 2 2020 chemo port installation day. In the parking garage I notice I can't see to the left. Wife has to park the truck. I'm still happy and skip into the surgery center. Fight is about to begin. Wake up and there are so many doctors in my room. My radiation oncologist. My neurosurgeon, my ENT surgeon, my general surgeon, my oncologist another oncologist I haven't met. Not really sure what's going on but I gather my installation was stopped. This has got to be bad. It's hard enough getting to see one doctor let alone all of them at the same time, after hours. Notice i am in the ICU! Why? Well during a planning. MRI the brain lesions grew to big, too fast for comfort and Gamma knife surgery is out. The new lesion in my neck was growing faster than anyone had seen. It was decided that after my Port was put in I'd have a craniotomy and start chemotherapy with a plan to change therapy once the genetics come back. That was their plan. General surgeon would not put in the port. She believed it had to be an infection because she just saw me 3 days ago and I way could a tumor grow that fast New MRI and Neck CT Way. Tumor could and did grow that fast. New plan. PICC line, Craniotomy, chemotherapy, gross dissection of the neck if I i don't need a tracheotomy before they find a surgeon willing to do it. Additional malignancies. Neck 16.1 cm (161mm) x 4.7cm mass in my right neck An 8.2 cm mass on my neck Multiple lymph nodes in the right neck too numerous to count. Poorly differentiated squamous cell carcinoma of the Head and neck.I have whole new cancer. Prognosis unknown Next mind Blown ->>>

Exactly except 180 days. 19 the first 3 years . Hoping to only need 6 the second 3. No edema this time after upping the Boswellia dose back to 4800. 1200 mg c You are having visual changes?

Hey hello there. Have your MRI yet?

First UK patients receive experimental mRNA therapy for cancer (vaccine) https://www.imperial.ac.uk/news/251213/first-uk-patients-receive-experimental-mrna/

Waiting truly does just suck. Not like the hurry up and wait of boot camp. More like waiting in a hospital for word on a loved ones condition. Just it's you. They are most likely waiting on genomic testing results. This will guide their treatment. Normally 2 to 4 weeks. Hopefully you've had an MRI by now and are fully staged. Know this. Lung cancer is not an automatic death sentence. I was diagnosed stage IV with Mets to my liver, skin ,and brain July 2020. The next month I developed a whole new stage 3 head and neck cancer. I've been in full remission since March 2021. If you read the statistics just use them as a guide to treatment. Don't trust them as a guide to life. Trust that you can be treated.

I won't use the VA . My son only uses the VA. my dad uses TriCare and the VA pharmacy. Kinda scary if you're in Omaha. https://nebraskapublicmedia.org/en/news/news-articles/deadly-mistake-omaha-vietnam-vet-dies-after-va-fails-to-notify-him-of-potential-cancer-his-widow-worries-hes-not-alone/

These lesions (right back) always worry the radiologists. They are not cancer even though they are FDG avid. They are some form of acne caused by Avastin. My skin metastasis started as what looked like acne but quickly grew. And I'm supposed to monitor them with the dermatologist but I stopped when mine moved. Now ill go to my wifes if she tells me.

Unfortunately I don't think he'll be able to receive immunotherapy at stage 1 unless his tumor was larger than 4cm. Someone should run a clinical trial of chemoradiation plus immunotherapy for early stage lung cancer. I wonder if it would be ethical.

I've had many surgeries over the years and none were as bad as I thought they would be. I statistically had about a 1% chance of making it past 6 months. I'm here 42 months later because while not believing in odds per se. I do believe they're useful in choosing treatment options. I always choose the one with the best odds for success. Ask the radiation oncologist what the 5 year survival rate is for SBRT. Then ask the same thing from the thoracic surgeon. Finding lung cancer early is so rare. Continued good luck to the booth of you. It's very possible to beat this no matter what direction you choose.

Is there a reason for SBRT over surgery? Surgery is the gold standard for curative intent. Below is literally the Healio clinical guidance verbatim. SBRT represents a potential loss in life-years among this patient population. https://www.healio.com/news/hematology-oncology/20230601/surgery-confers-higher-5year-survival-rates-than-radiotherapy-in-earlystage-lung-cancer

He will. It's immensely curable. The most common cancer (3m+ a year) in the most common location. Assuming It's still small since the dermatologist was willing to take it. Are you Japanese? If so basel cell carcinoma would be extremely rare (.26 per 100k or about 400 a year in Japan) even more so than the extremely rare squamous but still immensely curable.

Not a doctor but before you worry needlessly, over 80% of solid pulmanary lesions are benign. But just in case You should ask for a PET/ CT scan as recommended by the NCCN guidelines for solid lesions >8mm. You need to register to see anything but it's free. https://www.nccn.org This is the RADS that will tell what's suspicious. https://www.acr.org/Clinical-Resources/Reporting-and-Data-Systems/Lung-Rads While a PET is not perfect it's way safer and less painful than a biopsy. If nothing glows you can probably skip the biopsied If the PET comes back not suspicious then LDCT in 3 months if no charge 6 months then yearly LDCTs until you're longer a candidate for definitive treatment Don't settle for less than the guidelines.

It worked incredibly well. My disease spread and grew faster than any heard of. If died faster than anyone could have hoped for. 12 days later looked like this. I no way is this indicative of a normal response. But it is about what the on call oncologist in the ICU said. Cancers that grow fast if the respond to treatment tend to respond fast.

Call your dermatologist and see if they can get you in sooner. A CT will show a some lesion but for your skin your eyes are much better. A PET can also pick them up. Cutaneous metastasis is extremely rare. Do not pay attention to the prognosis. I was given a poor prognosis after developing a skin lesion. But here I am over 3 years later. I've also had other lesions biopsied that were not Cancer done at the dermatologists office. Here's my Cutaneous metastasis before starting keytruda

But seriously think it was 8 pages deep to find this forum.

I'll post a deeper history in a bit. Retired 11 years. Air traffic controller, software engineer, now just a beach bum with everlasting Doctors appointments. And glad I have the opportunity to have them

Jello. July 2020 ER visit led to stage IV NSCLC and SCCHN diagnosis. Remission since March 2021 but I knew well before then. This forum is impossible to find. Even from longevity.org homepage you can't find the forums.