Fuck Cancer

[present tense]

FIL received a lung cancer diagnosis today, in shock and processing. I Don’t understand the details but apparently it’s been caught “early” and with “good” prognosis. Vibes welcomed from the TGR community. Vibes shared to all those who are dealing with inter-family dynamics of a complicated and uncertain outlook.

[ötzi]

Memorial Day marked the one-year anniversary of the completion of my treatment and passed with no red flags at all. So that's good. Still feel effects from the radiation on my neck, that shit was fierce. But it's dealable and much better than the alternative.

present tense, they told me I had the only two good words in cancer going for me back at the start of my treatment, "early" and "small", but "good prognosis" should be on that list. He's gonna have some shit to go through but he's just gonna suck it up and deal, it's what you have to do. It's something to get through. Every day is a day closer to the end of treatment and the start of getting back to normal, I guess try to help him keep that in mind if you can.

[Buzzworthy]

I was at that conference over the past few days.

That result is very impressive, but needs context. The drug involved is Pembrolizumab (Keytruda) which is an immune checkpoint inhibitor. It works by releasing a suppressive signal between tumor cells and T-cells that prevent the T-cells from actively killing the tumor cell. It is an amazingly successful drug and is approved in a huge number of cancer types. However, it only helps ~20% of patients (in aggregate). This is because your body has to mount a T-cell response in the first place for the drug to be effective. And which tumors mount a T-cell response? ... those that are massively mutated (genetically mutated) and look more "foreign" to the body. There are many ways to measure this. One subset of patients that have highly, highly mutated tumors are MSI-hi patients. I won't go into what "MSI" stands for unless someone wants this info.

So the bottom line here is that in that clinical trials result you linked, those patients were all MSI-hi and expected to respond to Keytruda. That should temper enthusiasm a bit, but the magnitude of the response is still remarkable. Those patients didn't even need chemo or surgery. So if, God-forbid, you get cancer, it's best to be MSI-hi (typically only occurs in colorectal cancers, btw).

Hope that helps.

My friend a few doors down had stage 3 melanoma. Surgery in two areas to remove bits and also the whole lymph nodes removal on one side of his armpit area. Keytruda was his prescription. He’s cancer free 2 years later. Thankful as he has 3 kids under 6 and he’s only 36.

[present tense]

Thank you for the insight and glad to hear about your one-year anniversary went, here’s to another day at a time to get closer to hear two.

[huckbucket]

My friend a few doors down had stage 3 melanoma. Surgery in two areas to remove bits and also the whole lymph nodes removal on one side of his armpit area. Keytruda was his prescription. He’s cancer free 2 years later. Thankful as he has 3 kids under 6 and he’s only 36.

Melanoma is the prototype for immune checkpoint inhibitor therapies. UV causes DNA strand breaks which lead to the accumulation of mutations. Melanoma is one of the most mutated (i.e. foreign) tumor types which leads to strong immune response that benefits from lifting the brakes on the T-cell activity. Unfortunately, some tumors types are cold. Here's a rough guide;

https://www.pnas.org/doi/10.1073/pnas.1616440113

[ötzi]

So in my treatment, I had a surgeon and a radiation oncologist and, somewhat predictably, the treatment plan was 1. Cut it out and 2. Burn out whatever's left with radiation. Where would a suggestion to try checkpoint inhibition therapy have come from? The old adage that "when you're a hammer, everything looks like a nail" comes to mind. The surgeon said cut, the radiation doc said burn. Go figure.

My treatment was at Hopkins and they have a weekly "Tumor Board" meeting with all the smart people together in a room (or by zoom if there's a pandemic going on as happened in my case) where active cases are reviewed and everyone has a chance to weigh in so I have to assume that somebody would have piped up if this type of treatment was a possibility, but how would I really know?

It became very clear to me in the course of all this that you have to be your own advocate in the treatment process and I'm a good researcher for just being a random schmoe but I had never heard of this therapy until quite recently, so I'm wondering just a little if it was considered in my case and also how a patient like present tense's FIL makes sure that all options are considered.

[jono]

Agree with all that. My surgical oncologist didn't think he could help me (as conveyed to at least two other docs, not so much to me) because differentiation didn't favor surgery (his main hammer). That's not a criticism of him, I'd recommend him in a heartbeat, but perspective matters and no one has time to specialize in your exact personal condition except you.

how a patient like present tense's FIL makes sure that all options are considered.

Am I reading it wrong? Because I think I'd present huckbucket's chart when I ask my doctor about Keytruda.

[huckbucket]

Immune checkpoint inhibitors are only approved in discrete clinical settings where the clinical data support their use. Yes, sometimes off label leads to us finding new places where it can help patients, but the approval landscape for Keytruda is really the place to start when it comes to knowing who should get it and at what stage of their treatment.

I appreciate this is complicated information, but here's the most recent approval data;

https://www.keytrudahcp.com/approved-indications/

There's a lot there. I'd be happy to answer any questions that come from review of that page.

For ötzi;

Here's how Keytruda is used in HNSCC;

KEYTRUDA, in combination with platinum and fluorouracil (FU), is indicated for the first-line treatment of patients with metastatic or with unresectable, recurrent head and neck squamous cell carcinoma (HNSCC).
COMMENT: First line means previously untreated. Note metastatic and unresectable, which it doesn't sound like it applied to you.

KEYTRUDA, as a single agent, is indicated for the first-line treatment of patients with metastatic or with unresectable, recurrent head and neck squamous cell carcinoma (HNSCC) whose tumors express programmed death ligand 1 (PD⁠-⁠L1) [combined positive score (CPS) ≥1] as determined by an FDA-approved test.
COMMENT: PDL1 is a protein marker of T-cell suppression and high levels of PDL1 are associated with response to Keytruda which is why it's a qualifier in this case.

KEYTRUDA, as a single agent, is indicated for the treatment of patients with recurrent or metastatic head and neck squamous cell carcinoma (HNSCC) with disease progression on or after platinum-containing chemotherapy.
COMMENT: Again, metastatic.

[riser4]

I was at that conference over the past few days.

That result is very impressive, but needs context. The drug involved is Pembrolizumab (Keytruda) which is an immune checkpoint inhibitor. It works by releasing a suppressive signal between tumor cells and T-cells that prevent the T-cells from actively killing the tumor cell. It is an amazingly successful drug and is approved in a huge number of cancer types. However, it only helps ~20% of patients (in aggregate). This is because your body has to mount a T-cell response in the first place for the drug to be effective. And which tumors mount a T-cell response? ... those that are massively mutated (genetically mutated) and look more "foreign" to the body. There are many ways to measure this. One subset of patients that have highly, highly mutated tumors are MSI-hi patients. I won't go into what "MSI" stands for unless someone wants this info.

So the bottom line here is that in that clinical trials result you linked, those patients were all MSI-hi and expected to respond to Keytruda. That should temper enthusiasm a bit, but the magnitude of the response is still remarkable. Those patients didn't even need chemo or surgery. So if, God-forbid, you get cancer, it's best to be MSI-hi (typically only occurs in colorectal cancers, btw).

Hope that helps.

So I got that going for me [due to family history and examination of the polyps that have been harvested out ma azz so far in 7+/- colonoscopies over the last 20 years].

[ötzi]

@Huck: Yeah I mean it got into one lymph node but was "completely encapsulated" there so thankfully, apparently not really metastatic. And in any event it appears (and I don't use that word lightly) that they got it all and the treatment worked, so I'm not that concerned about me and Keytruda as things stand.

But I do wish that it had at least been mentioned (even if dismissed) and it got me thinking about the treatment process and how a patient can make sure that all options are considered even if they don't know what all the options are.

[Mazderati]

The whole personal advocacy thing is life advice but especially important in healthcare where the stakes are high. There are good doctors, bad doctors, and lots of in-between. In general, I try to work around some of the hammer effect by looking for physicians old enough to have some experience but young enough to still ask questions.

Glad to hear about your outcome, ice. present, sorry to hear about your FIL. jono, glad you are still on the other side.

[Dantheman]

Deaths due to medical errors are tracked in a few separate categories and if you total them all up they become the third leading cause of death behind heart disease and cancer (well, maybe fourth if you count COVID in the last two years, point stands). Every interaction with the medical system is an opportunity for things to go sideways and you should always be on high-alert.

[Bunion 2020]

Best friend is flying back from Mayo today. 3 rounds of Chemo haven't made a dent in the tumors.

He is sounding pretty down. We have had several honest talks about the next thing and he maybe getting close to it. Anything one can say other than "dude, that sucks, I am so sorry, hang in there"?

Another acquaintance went into to Hospice 2 weeks ago and was gone in 4 days.

FUCK CANCER

[The SnowShow]

Recently learned my friend has stage 4 lung cancer. Non smoker, mid 50s, wife and 2 kids. Starting having some issues breathing that he thought were allergy related. Got some scans and suddenly found out it has spread around his chest, brain and bones. I have been walking around nauseous and shaky for a couple of days. I cannot believe this came on so fast. It scares the shit out of me for him and his family. How the fuck does this happen? How could there have been no signs when it was treatable? Why the fuck does this happen to good people?

[easyrdr]

Sorry to hear that SnowShow. My best friend of 25 years lived with Stage 4 lung cancer for 7 years. Never smoked a day in his life, marathon runner, professional ski patroller, never could catch him on the skin track. Showed no signs of any sickness until the very end. It was a fluke that they even found it to diagnosis him. He died last July, he was 43. Left behind a wife and daughter.......and I still can't comprehend any of it. I wish I had something positive and uplifting to tell you. What I can say is enjoy every fucking minute going forward. Hang in there.

[SumJongGuy]

How do we accept the unacceptable? We can't :-( Lung cancer is quick.

[Meadow Skipper]

FIL received a lung cancer diagnosis today, in shock and processing. I Don’t understand the details but apparently it’s been caught “early” and with “good” prognosis. Vibes welcomed from the TGR community. Vibes shared to all those who are dealing with inter-family dynamics of a complicated and uncertain outlook.

Heartfelt vibes to you and yours.

And to everyone else in this thread, too.

[present tense]

Thanks for the vibes and valuable insight. FIL consulted with a surgeon who recommended removal, radiologist is recommending starting treatments ( not exactly sure what the exact treatment is)

How do you know which dr to listen to or do insurance companies make that decision?

[ötzi]

Well one thing is to get the best doctors you can and not just trust whatever the first guy says. The best doctors tend to be affiliated with the best hospitals but the Mayo Clinic, MD Andersson, the Cleveland Clinic, Dana Farber etc. are all on that list.

A place that specializes in cancer like MD Anderson or Dana Farber or Memorial Sloan Kettering would be my recommendation, they will have access to the latest trials, techniques, equipment etc. Not that other places won't but at the top cancer places you can be confident that they will be fully up to speed on the science.

Don't just wait for whatever insurance says, try to be proactive, pick up the phone and try to make it happen. Google the terms that come up. You have to be your own advocate in this stuff.

[jono]

Definitely no leaving anything to insurance. They'll try to tell you nothing is going to work, he's not a candidate for it for any reason they can find etc because they don't want to pay. They don't really get to make that call, but they put up resistance as SOP.

I wouldn't be as concerned about finding a leading cancer center necessarily as ötzi, but my experience ran to the unusual in that respect and I had to get up to speed on a lot of the treatments just to join the fight with insurance, so by then I was a bit more comfortable picking docs. I also had a few good local options. His situation may differ. (ETA: this is not to argue against going to a leading center, that's a good option for all the reasons listed as well as the fact that they'll have established relationships between disciplines. But if that's not a good option for him he may still be able to find a good local doc who's up to speed on the science and his specific disease. That would be my goal.)

Usually the docs should be talking to each other but if they straight up disagree another opinion is in order for sure--and going someplace farther away for that might be well justified. In any case I'd be asking them all to talk percentages. Don't let the numbers scare you, his situation may be better than most, but the most effective of the options is probably still the right choice, unless they can give reasons otherwise. And they should be familiar with the numbers.

A medical oncologist may also suggest chemo or an immunotherapy--or not. Looking at effectiveness for his specific case should help decide. It's likely he will end up with multiple treatments, but the order is important.

Also, it sounds like good news if they're confirming he has effective treatment options to choose from. Sorry you have to go through this, but good luck!

[TNKen]

Don't just wait for whatever insurance says, try to be proactive, pick up the phone and try to make it happen. Google the terms that come up. You have to be your own advocate in this stuff.

When the insurance company stonewalls you, mention "bad faith" in the sentence...

[huckbucket]

Thanks for the vibes and valuable insight. FIL consulted with a surgeon who recommended removal, radiologist is recommending starting treatments ( not exactly sure what the exact treatment is)

How do you know which dr to listen to or do insurance companies make that decision?

Genomic profiling is quickly becoming routine for lung cancer care. Make sure that whomever he works with is committed to doing this because the results of the profiling can have profound impact on which therapy to choose and how he will respond.

[present tense]

Really appreciate the insight from everyone in this thread. Ot, huck, Jono amongst others. Thanks

[priapism]

I was diagnosed with leukemia (b-cell Ph- ALL) this past May. Funny how symptoms really started during a ski trip in Mammoth. I thought I was acclimatizing poorer than usual with lots of fatigue and tiredness, but it was like that for the whole week. Got to ski some sick inbounds and BC powder though. Took about another month after getting back to sea level before I had to check into the ER–in the meantime useless urgent care and teledoc thought I had some virus and that my swollen lymph nodes were "just a viral rash". ER immediately did a blood test and found my WBC at 104K.

I finished induction therapy like 3 weeks ago and the first follow-up biopsy shows partial remission but still MRD+. Doctors want me to get a stem cell transplant and if all goes well hopefully I could get back on skis as early as December/January. I physically feel fine now and am ready to start the next cycles. Really the worst pain was that first ER day when my liver and spleen just couldn't handle all the white blood cells, and then later with headaches from some blotched spinal tap chemo sessions.

Hate being 29 and all my friends seem to be killing it professionally and I have to deal with fucking cancer. That said I'm optimistic bc ALL is decently survivable and docs have a good arsenal of treatments. Funny thing my employer did layoffs (I'm still on board but they cut like 60% of the company) a week after my dx and said they could go bankrupt in like 1-2 months, which obviously could have me lose my health insurance. Like what else could life throw at me. FUck this system.

[yeahman]

That sucks man, vibes. Hope you beat it and your career stuff works out.