r/MadeMeSmile Jan 01 '25

Good News Science works

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u/Lessllama Jan 01 '25

I have more good news. My dad has inoperable, untreatable brain cancer. He's part of a clinical trial for a new cancer drug. His initial prognosis was 1 year left. That was 6 years ago. This drug is going to revolutionize cancer treatment. Science is amazing

641

u/FootSlappies Jan 01 '25

I hope that you have many more good years with your dad. Thanks for the additional good news!

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u/Lessllama Jan 01 '25 edited Jan 01 '25

Thank you. Age is catching up with him so I don't know how much longer I have but I am eternally grateful for this drug because it gave us so many more years than we would have had.

I'm so very excited to see this drug come on the market so other families can have what I did

Edit: the drug is so effective his brain tumor has only grown 1 millimeter in 6 years

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u/jimyjesuscheesypenis Jan 01 '25

What’s the name of the drug if you don’t mind?

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u/NotSassyAtAll Jan 02 '25

I also wanna know the name of drug? I might've read about it in my med books. Just silly curious now.

1

u/Lessllama Jan 02 '25

I don't think it has a name yet, it's still in the first human trial

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u/NotSassyAtAll Jan 03 '25

I don't think so, the doctors/researcher must know. Thanks anyway!

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u/Lessllama Jan 03 '25

I'm sure it has a scientific name, just not a brand name yet. They deliver it to my dad one month at a time in an unmarked box

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u/puppymonkeybabiez Jan 01 '25

Was his brain the original site of the cancer? Will this work on cancers that originate elsewhere and spread to the brain?

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u/Travelgrrl Jan 01 '25

My former husband was diagnosed with 4th stage lung cancer, back when the survival rate was only 5% that would live for a year. It did spread to his brain and other places in his body, but kept getting beaten back by new oral medications.

He lived for almost anther 6 years, which was a blessing. The new drugs can work so well for some people.

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u/Lessllama Jan 02 '25

He was diagnosed with leukemia and the brain cancer at the same time. He went through 3 rounds of chemo and radiation. Chemo completely put the leukemia into remission but neither treatment did a thing for the brain tumor. It's also inoperable due to its position

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u/DropsOfChaos Jan 01 '25

Can you share more info on the trial or drug please? My partner has grade 4 brain cancer, we're looking into options for treatment.

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u/Lessllama Jan 01 '25

Sent you a message

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u/Lessllama Jan 01 '25

I really wish I could unfortunately it's a closed trial. I'm wishing all the best for you though

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u/[deleted] Jan 01 '25 edited Feb 26 '25

grandfather edge political dull scandalous quiet roll makeshift lavish plate

This post was mass deleted and anonymized with Redact

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u/Lessllama Jan 01 '25

Unfortunately there's a lot of legality involved in early stage clinical trials because of proprietary information. I did send that person a message with some breadcrumbs to give them a starting point. I truly wish I could share it but I would be putting my dad's treatment and even the whole trial at risk if I said more

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u/[deleted] Jan 01 '25 edited Feb 26 '25

spotted snails combative ask pen plucky zealous expansion knee practice

This post was mass deleted and anonymized with Redact

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u/Lessllama Jan 01 '25

It's infuriating how long trials last. I mean I get they have to be thorough but it's like come on, let's get this shit out and start saving lives

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u/mosquem Jan 01 '25

It’s kind of interesting because a lot of cancer trials are taking longer now, but it’s specifically because therapies have become more effective and it takes longer before you accrue enough events (usually deaths) to know if the new therapy is more effective.

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u/Aloogobi786 Jan 02 '25

I know it's kind of maddening but it's to make sure that drugs have good bodies of evidence. We need to be confident we aren't causing huge side effects or long term effects. Especially if it's a first in human drug or new drug class. Hopefully it will be available soon!

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u/Lessllama Jan 02 '25

I get it. I'm just impatient after seeing how effective it is. I want more people to have the time I have had with their loved ones

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u/TheAmericanDonut Jan 02 '25

Fortunately people with serious conditions that are deemed terminal can potentially get access to drugs currently in trial . One thing Trump did was pass a law back in like 2018 or something allowing this (essentially making it okay for companies to Provide those drugs in some circumstances if it could potentially help. Some companies have compassionate use programs where they triage these requests , cross check with FDA medical safety and use ethics boards in some cases and provide the drugs for free (not always and some companies don’t even respond which was in the news a year after the law when one of the citizens used as an example still hadn’t gotten access). Small steps in the right direction tho.

If I ever win the lotto, I’d like to create a non-profit that would help patients with those requests along with their physicians but also help facilitate getting the drugs from the companies as quick and efficiently as possible (super hard and obvy $$ is involved) but I’m hopeful we’ll see more progress in this and the overall oncology space

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u/Travelgrrl Jan 02 '25

Unfortunately, that's what the purveyors of Thalidomide thought.

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u/TheAmericanDonut Jan 02 '25

If u look into the history of clinical trials, it’s because of prior “treatments” for cancer that wound up actually not being beneficial at all. The current landscape of using real world evidence and data will help improve things but we’re where we’re at today because of improvements in process to ensure we’re actually doing good vs potentially causing some harm down the line. Lots of variables as well which is why large groups and separate studies are needed

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u/randomguide Jan 01 '25

That's awesome!

My Dad was diagnosed with Alzheimer's two years ago, and quickly joined a clinical trial. He's had no noticeable mental decline since then.

There's still hope in the world.

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u/Comprehensive-Sir270 Jan 01 '25

Where are all the “pHARMa bAd, healing crystals good” crowd? They never show up for the success stories.

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u/Lessllama Jan 01 '25

Yet they're the same people to go to the hospital begging for treatment when they need it. Then blame the drs if it doesn't work

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u/avwitcher Jan 01 '25

Like the guys who ate horse paste to cure COVID and ended up going to the hospital to get something that actually works

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u/Illustrious_One6185 Jan 02 '25

Ivermectin is categorically NOT horse paste. It's an anti-parasite medication on the WHO's list of Essential Medicines, it earned the two primary discoverers the 2015 Nobel Prize for Medicine and has saved hundreds of millions from River Blindness since its approval in the mid-1980s.

For the vast majority of people Ivermectin would have been of no use as a treatment or a prophylaxis for COVID-19, but it at least wouldn't have done any harm without extreme overdosing, and its cheap. But in the case of any COVID patient with undiagnosed Strongyloides (that's threadworm for most of us), treatment with corticosteroids would be fatal in 90% of cases. 370 million people worldwide (estimated) are infected with threadworm but undiagnosed. Ivermectin prevents that.

Science- real science as opposed to "The Science(tm)" we were encouraged to follow like sheep- is a hell of a lot more nuanced than journalist like to make out, and far too nuanced for the attention span of the typical news-viewer or newspaper-reader. As for the attention span of the typical politician and his advisors, don't make me laugh.

1

u/morethan3lessthan20_ Jan 02 '25

I feel like we should put an exception in the Hippocratic Oath for those types

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u/dasgoodshitinnit Jan 01 '25

I mean pharma bad (in unregulated capitalism, but money's heelllllluuuva motivator)

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u/rougecrayon Jan 01 '25

The industry is bad, pharmaceuticals in general are pretty bomb. Crystals pretty.

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u/BigFudge402 Jan 01 '25

I work in clinical trials, and formerly in oncology trials, I love this story

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u/Lessllama Jan 01 '25

Thank you for what you do. Everyone always hails police and fire fighters as heroes but to me people like you are

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u/Corathecow Jan 02 '25

I’m 99% sure I know exactly what trial you’re talking about because it started just months after my grandpa died of a very very aggressive brain cancer. I’m so happy for people who it’s helped but god I wish they made literally just 6 months sooner

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u/Lessllama Jan 02 '25

I'm so very sorry for your loss. I pray this new treatment comes soon so people won't have to grieve like that anymore

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u/Igoritzaa Jan 01 '25

Here's even better news for you -

Scientists invented CRISPR and is not talked enough.

It's a scientific breakthrough as large as Fire, Engine, or electricity, it's the biggest discovery in the history of medicine

Short info, simplified:

There's a certain Bacteria that has the ability to edit and change DNA

Some smart people used it's process, to invent our own version of changing the DNA

It is so efficient, that it can even change White cell DNA and RNA instructions to target specific diseases

It is SO EFFICIENT that chinese crew removed extra chromosome 21 in-vitro (like, literally curing Down syndrome)

How is this important - we can target EVERYTHING that is killing people

Up until 2019, people with Huntintons had one of the worst diseases ever. Suicide rate after turning 30 is 75%, because you lose your entire body function. The biggest effort in medicine to battle Huntingtons was to alleviate symptoms, even Stem cells would only give you a couple of extra years

CRISPR can erase your Huntigton's disease (has the potential to).

At this point I am amazed that they released it, but then, also scared as to why so few people are talking about it

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u/Seek3r67 Jan 01 '25

Use CRISPR (in lab setting), it is not so simple or easy. There’s ALOT of problems, but the main one is this - your DNA is the same in every cell in your body (more or less). So to “cut out” a gene for say a brain disease, you need to do CRISPR on the billions of cells in your brain…how do we deliver such a drug to every cell in an organ? Or in the body? And how can we do that without messing up what’s already there or accidentally cutting what’s important. That’s just one of the many barriers.

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u/Igoritzaa Jan 01 '25

Use CRISPR (in lab setting), it is not so simple or easy. There’s ALOT of problems, but the main one is this - your DNA is the same in every cell in your body (more or less). So to “cut out” a gene for say a brain disease, you need to do CRISPR on the billions of cells in your brain…how do we deliver such a drug to every cell in an organ?

Gene therapies are the general idea.

And how can we do that without messing up what’s already there or accidentally cutting what’s important.

Yeah, until 2014 we called a lot of DNA "junk" when in fact, it was a huge amount of necessary data that we didnt know what it's use is for.

The idea is to influence specific gene sequences, large genome spices, that hold the genetic mistake, or instructions, or protein generating systems, and so on. Ones that we know of, what they do and what is their main function

It's in early stages but it is one of the most promising inventions in medicine. It's literally a 50+ years skip if we find a way to perfect the process

4

u/Insert_Non_Sequitur Jan 01 '25

Wow, that's amazing!

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u/LegendofLove Jan 01 '25

I don't know if that first part is good news but good stuff that your dad is doing well

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u/Lessllama Jan 01 '25

Lol yes i worded that badly but I had to lead with the bad to get to the good

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u/[deleted] Jan 01 '25

I love this for you stranger

1

u/Lessllama Jan 01 '25

Thanks ❤️

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u/01029838291 Jan 01 '25 edited Jan 04 '25

My mom had brain cancer, glioblastoma multiforme, she was given 3 months but it was 2 years before the tumor started showing signs of growing. She chose to do assisted suicide after that, but I thank the clinical trial she was apart of for the extra year and nine months we had.

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u/velveeta-smoothie Jan 02 '25

My friend recently was part of a team that developed such an effective treatment for a rare type of leukemia that it can basically be called a cure. It used to be a six-month-death-sentence and affected around 10K people per year from infants to the elderly!

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u/Lessllama Jan 02 '25

Science is so amazing!

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u/minicpst Jan 01 '25

Congrats!!!!

1

u/rando_sissy Jan 01 '25

CAR-T? TIL?

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u/FernandoMM1220 Jan 01 '25

what type of brain cancer and which drug is it?

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u/Lessllama Jan 01 '25

Tbh i don't think they've named the drug yet. It's still in first stage of human trial. And i can never remember the name of his type of brain cancer. Its extremely rare.

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u/thisaccountgotporn Jan 01 '25

Awesome to have a dad who's a good omen to the world!

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u/Lessllama Jan 01 '25

He's a pretty awesome Dad too

1

u/d-licouse Jan 01 '25

Do you know what company makes it? I think that's a good investment opportunity.

1

u/Lessllama Jan 02 '25

It's not being produced yet, it's still in first human clinical trial

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u/PainItself1 Jan 02 '25

Name of the drug?

1

u/personplaygames Jan 02 '25

man i hope this also happens to my dad

he has liver cancer a rare one

very costly but i hope it works

0

u/No-Mousse4832 Jan 01 '25

What drug is this, I have an uncle that's dying from throat cancer.

1

u/Lessllama Jan 02 '25

It's still in trial and probably will be for another 5-10 years unfortunately