[ghjnut]

This is me. I'm 34 years old and was diagnosed with stage 3B non-small cell lunge cancer in February- a 3cm adenocarcinoma in my right lung as well as metastases in some lymph nodes. When they tested me they found my cancer to have an ALK+ biomarker which is frequently found in young, non-smokers. Luck of the draw I guess.

[EForEndeavour]

Sorry to hear. I don't know much about cancer, but that sounds scary to say the least.

What was your pathway to diagnosis? Was it picked up in a routine checkup, or did you feel symptoms that convinced you to see a doctor?

[ghjnut]

I had a dry cough for about 3 months that only seemed to crop up in the evenings. I didn't think much about it as I have quite a few allergies and chalked it up to that. I decided to visit the doctor when I started getting some chest tightness when I was going to sleep and I was also getting what I can only describe as hot flashes just as I was falling asleep. It felt like just as I was about to fall asleep I'd get an adrenaline shot and I'd spring back up wide awake.

My PCP did a clean EKG which showed nothing, then it showed up on X-Rays. I immediately got PET scans which showed 2 masses. I then had a bronchoscopy to ensure it was malignant where they noticed additional lymph nodes. I then had a mediastinoscopy showing spread in 3 clusters of chest lymph nodes. I went through 6 weeks of chemo and radiation that resulted in a 25% reduction in the primary tumor and no change in the metastases in a hilar lymph node. I'm now scheduled for a bi-lobectomty to remove my superior and middle lobe on the right side, as well as however many lymph nodes they can get a hold of (check out "da vinci thoracic surgery" to see the robot beast the surgeon will be using).

I have almost no symptoms outside of a slight cough and still run 1-2 miles per day.

I've generally been a grin-and-bear-it guy when it comes to my health. Please suck up your pride and stay on top of your health.

[rockyj]

I was diagnosed with "Thymus Carcinoma", pretty similar story as yours. Had chemo, surgery and radiation. Doctors also did "hot chemo" during the surgery. With the grace of Jesus I am alive today.

It was a tough few months, but because of my trying times I think I got stronger in my faith and I would say it was worth it. It's a good feeling to live life knowing that God is by you, makes one more empathetic and puts value back on the important things like family.

Everyone has their own journey, I just want to encourage you :)

[EForEndeavour]

Thank you for sharing this extremely detailed experience. I could definitely see your comment helping to save some stranger's life when they google something like "adrenaline shot before sleep chest tightness."

Best of luck with your impending encounter with the da Vinci bot and life after cancer.

[usgroup]

You’re an awesome human. I’m in awe of your composure and wish I could do the same if it ever happened to me.

[quenix]

The "adrenaline shot" you describe -may- be normal. It's called a [hypnic jerk](https://en.wikipedia.org/wiki/Hypnic_jerk).

[ghjnut]

That sounds a lot like it. Maybe the cancer triggered it or maybe I just lucked out with an unrelated symptom prompting me to visit a doctor.

[moooo99]

Thank you for sharing your story, that pathway sounds scary to say the least. I am absolutely impressed how well you seem to take it.

I which you the best of luck and a long life after your encounter with that incredibly scary yet fascinating robot!

[pazimzadeh]

I'm sorry to hear that. You might want to look into high dose IV Vitamin C injections for solid tumors (which have the oppposite effect of oral Vitamin C).

High-dose vitamin C enhances cancer immunotherapy https://stm.sciencemag.org/content/12/532/eaay8707

Scroll down to cancer treatment: https://ods.od.nih.gov/factsheets/VitaminC-HealthProfessiona...

[voldacar]

I was about to downvote but that first study actually looks legit. Still a mouse model, but maybe worth looking into further.

[pazimzadeh]

My understanding is that Linus Pauling and others had incredibly promising human trials, but attempts to replicate always seem to alter one 'minor' detail or another like adding glutathione (an anti-oxidant) or giving high dose vitamin C orally instead of intravenously. This is before they knew that Vitamin C is pro-oxidant when deliver at high dose in the blood. You want anti-oxidants to prevent cancer but once you have cancer you want oxidants. Like you want bullets.

What the mouse model suggests is that you need an immune system in the first place to get the benefits of high dose IV vitamin C (HDIVC), since the mice lacking an adaptive immune system didn't get the effect. It's unclear how exposure to different amounts of chemo, which messes with the immune system, disrupts the effectiveness of HDIVC. i.e should it be tried first, or in what combination?

[IndySun]

Interesting that patients who already had high vit C / good immune system in their body did not see a significant or relevant change.

Quote...

"During the 1970s, studies by ... Pauling suggested that high-dose vitamin C has beneficial effects on quality of life and survival time in patients with terminal cancer. However, some subsequent studies—including a randomized, double-blind, placebo-controlled clinical trial ... did not support these findings. ...patients with advanced colorectal cancer who received 10 g/day vitamin C fared no better than those receiving a placebo. The authors of a 2003 review assessing the effects of vitamin C in patients with advanced cancer concluded that vitamin C confers no significant mortality benefit."

[ghjnut]

Definitely not the craziest think I've heard (vitamin B17 is). I'll check it out.

[rootbear]

My sister (age 67) was diagnosed with exactly this a year ago, except she's stage 4. She's on Alecensa (alectinib) and is doing well, all things considered. Her left lung doesn't work very well, but she's dealing with it. Her cancer isn't localized, so surgery isn't an option. She did have radiation therapy on one tumor.

Alecensa is freaking expensive. Even with Medicare, it's costing her about $10,000 a year in deductibles and copays.

I wish you all the best for your treatments.

[ghjnut]

That's actually better than I heard. Since ALK is more generally rare biomarker (as opposed to EGFR) more of the drugs are still in trial. I asked an oncologist friend about costs and she said $11,000/month.

[rootbear]

The raw cost of Alecensa is around $18,000/month, if I recall correctly. Medicare covers all but $800 of that, once the copays are spent.

[cschneid]

That's the cancer my dad has - non-smoker, just a surprise stage 4. He's had great success with a few different inhibitors over the years.

His doctor's approach has been using them to reduce the cancer to near-zero, and then radiation (and in future, chemo) to knock down any stray masses that get a foothold.

[azalemeth]

I'm very sorry to hear that. It is my understanding that there are several ALK tyrosine kinase inhibitors that have specific approval for use in your condition (crizotinib, ceritinib, alectinib, and brigatinib) and I do hope you get the best care you can possibly get and fight the good fight.

[ghjnut]

That is correct. Unfortunately the TKIs are more for slowing/stopping spread temporarily until the cancer no longer responds - then on to the next one. My doctors were going for curative so I've been going the more traditional route and those will likely be tagged on post-surgery in an effort to keep anything missed in check. Also ALK+ is non-responsive to immunotherapy which would have been nice weapon to have in the arsenal as a cleanup crew.

It may be a pipe dream, but I'm hoping to hold on long enough that some of these new mRNA approaches start offering clinical trials I might be able jump in on.

[magicalhippo]

If you haven't, ask your doctors where it might to spread to, and carefully monitor changes in those areas.

I have experienced three cases in my close relationships where spreading was not picked up for a long time due to being in different body parts.

In one of the cases asthma medication and physiotherapy was prescribed for a year before an unrelated shoulder x-ray caught the attention of the radiologist, and further images showed the cancer had spread to lungs and spine...

[ghjnut]

I hadn't considered that. Thank you, I'll bounce that off them.

[agumonkey]

> It may be a pipe dream, but I'm hoping to hold on long enough that some of these new mRNA approaches start offering clinical trials I might be able jump in on.

According to Vince DeVita (ex head of NCI) it was the way they did things in the early days. Make people survive until something new came up.

Hopefully with the advances in medical research things will accelerate.

Best wishes

[azalemeth]

I am very glad to hear that you are getting neoadjuvant chemotherapy. I really do hope the resection is complete, and the chemotherapy works.

Regarding "holding on long enough" -- something that there has been shoddy but interesting evidence for over a number of years in dragging yourself further to the right of a Kaplan-Meier plot is dietary modification. As you probably know, one of the hallmarks of cancer is metabolic dysregulation [1] -- specifically a shift towards "anaerobic" glycolysis, that is, the increased uptake of glucose and an increase in the proportion of which ends up as its ultimate metabolic fate as lactate rather than entering the TCA cycle as pyruvate and being oxidised. Some thing that has been explored in the past is providing the organism with ketones as a primary fuel source (which enter the TCA cycle directly as either beta-hydroxybutyrate or acetoacetate) and do not get transported through the glut glucose transporters: in non-cancerous cells with some degree metabolic flexibility there is significant scope for generating other needed metabolites from the TCA cycle and a series of beautiful pathways to let that process happen. As a result, there are a series of papers that indicate that a purely ketone-based diet (exogeneous or endogenous) may be associated with an increase in life expectancy [2, 3, 4; or google scholar GS1] as -- the narrative goes -- cancer cells can't utilise the alternative fuel source as effectively. In mice, with a well controlled tumour xenograft, this has shown to extend survival, fairly significantly.

However, take this with a large grain of salt: there is some evidence that ketone utilisation might be associated with "stemmness" and baddness in general [5, 6] which (and herein starts a "I am hypothesising" warning) may be due to a selection pressure for metabolic flexibility and the return to a more fetal phenotype. The diets are also very difficult to adhere to in patients. These diets are just starting to be assessed properly, in people, in RCTs (e.g. [7]), but I can't find any evidence of a trial in lung cancer patients without a background of smoking specifically.

The most recent major review on the topic I can easily find [8] does seem to hint quite strongly that it might be worth considering, and there is some evidence that it potentiates tumours to other chemotherapies. If I were in your unfortunate position, I would personally discuss the concept with the oncologist in charge of my care – the basic idea "makes sense" to me, at least.

---- [1] https://www.sciencedirect.com/science/article/pii/S009286741... or https://sci-hub.st/https://www.sciencedirect.com/science/art...

[2] https://onlinelibrary.wiley.com/doi/abs/10.1002/ijc.28809 or https://sci-hub.st/https://onlinelibrary.wiley.com/doi/pdfdi...

[3] https://nutritionandmetabolism.biomedcentral.com/articles/10... or https://sci-hub.st/10.1186/1743-7075-4-5

[GS1] https://scholar.google.co.uk/scholar?hl=da&as_sdt=0%2C5&q=ke...

[4] https://link.springer.com/article/10.1007/s12032-017-0930-5 or https://sci-hub.st/https://link.springer.com/article/10.1007...

[5] https://www.tandfonline.com/doi/abs/10.4161/cc.10.8.15330 or https://sci-hub.st/10.4161/cc.10.8.15330

[6] https://www.tandfonline.com/doi/abs/10.4161/cc.9.17.12731 or https://sci-hub.st/10.4161/cc.9.17.12731

[7] https://www.mdpi.com/2072-6643/10/9/1187

[8] https://www.sciencedirect.com/science/article/pii/S221287781...

[ghjnut]

I have been turned off by how the approach is to treat me and I'm primarily a passenger for this ride. In response, I did the same research you did and came across the same stuff. During the chemo/radiation I was on a strict ketogenic diet with a less strict intermittent fasting schedule. Post-surgery I'm going to go the full 9 yards and extend to 7-day fasting once a month after hearing this anecdotal story:

https://www.saronarameka.com/ https://www.frontiersin.org/articles/10.3389/fonc.2020.00578...

[imoverclocked]

If you are looking for recipes or a second opinion relating to food, my girlfriend (who used to work as an neuro-immunologist doing cancer research) now does keto coaching and also has a ton of recipes online.

https://primalwellness.coach

[ghjnut]

Thank you. This is exactly the stuff I'm looking for as a newbie to keto.

[kozikow]

"Cancer as a metabolic disease" seems to be getting popular, but traditional oncologists are very suspicious of those approaches. Cases like Steve Jobs gave them a bad reputation, but they should be considered as an addition to traditional therapy, rather than a replacement. It is also harder to design and fund such a study - e.g. dietary changes or repurposed medicine like Metformin may not work accross different cancer types or even different geographies, based on local dietary patterns - especially if expecting the same effects in America, Europe and Asia. Someone has to pay for a study, and it's easier to find funding for $10,000 per month therapy rather than a dietary change or a generic diabetes drug.

https://www.amazon.com/How-Starve-Cancer-Jane-McLelland/dp/0... seems to be recommended as an introduction, but I still didn't finish it.

[azalemeth]

"Cancer as a metabolic disease" has been known since the 1920s when Otto Warburg discovered that shift towards "aerobic glycolysis"; that is, glycolysis even in presence of adequate oxygen for fatty acid oxidation. It's the basis of some treatment and medical imaging approaches – e.g. 18-FDG PET images the extra uptake of glucose caused by cancers' voracious thirst for glucose.

I agree that interest in diet is an increasing vogue – and I would never recommend replacing a medical therapy with dietary modification, but some of the citations I linked to above indicated that it may potentiate the effect of some other chemotherapies, particularly those that themselves have a metabolic effect. I agree with you about the difficulty in funding such trials, and the difficulty in both monitoring patient compliance with them and obtaining a robust and reproducible readout of their effects. Cancer is a heterogenous disease of life, and its response to therapy is too.

[kozikow]

My mother is on Osimertinib for Adenocarcinoma with EGFR Exon 19del mutation. Oncologist only recommended Osimertinib without any additions. Oncologist won't recommend anything that hasn't been confirmed by Phase 3 study. Phase 3 studies in oncology seem to be rare for treatments you can't make money on like $10K per month Osimertinib therapy. There are many things that have been shown effective alongside EGFR TKI inhibitors with minimal side effects based on smaller studies, cell models, retrospective data analyses etc.

So far we added Metformin [1][2] (not as diabetic drug), Aspirin[3], Vitamin D, low glycemic index, no red meat, mediterranean diet, freshly made juices from vegetables and fruits with anti-angiogenic or confirmed anti-cancer properties (e.g. kale, brocolli, apples, carrots, celery, turmeric, red grapes, berries). Metformin has been confirmed with an endocrinologist.

One issue with things like Keto is that it is too extreme to convince a regular 50+ years old person to consider such approaches. And frankly, neither of us has medical training, so we are afraid of trying too-unconventional approaches. Some other medications or supplements I heard recommended, but we didn't decide to include yet are reservatol, simvastatin, altrexone, doxycycline, boswellia, quercetin, keto, intermittent fasting.

1. https://jamanetwork.com/journals/jamaoncology/article-abstra...

2. https://www.frontiersin.org/articles/10.3389/fonc.2020.01605...

3. https://www.lungcancerjournal.info/article/S0169-5002(20)305...

[ArkanExplorer]

What level of air pollution exposure do you have? Have you monitored your indoor air quality with a PM2.5 device, or used an air purifier? Do you live near a busy road, or a coal plant?

Good luck for your treatment and recovery.

[ghjnut]

I live in Denver. I have not done any testing but moved into this house June 2019. Our inspection found the radon levels to be 3.9 pCi/L (4.0 is the recommended actionable cut-off). I recently installed a radon abatement system as we're refinishing the basement. Wish I knew for sure.

[tomcam]

Holy shit, my best to you.