Fuck Cancer

[ötzi]

meh that looks okay I guess

haha

Nice action, thanks!

[Meadow Skipper]

…Meadow Skipper wtf? That's bananas.

ikr?

Well at least you're rich now, right? Right?

Yeah, I’m comfortable.

When I went in for surgery I was still completely symptomless. I couldn't even feel the thing in my mouth. The surgeon came to check on me when I was getting prepped and I was like, "Now, you're absolutely sure you got the right guy, right?" He didn't think it was funny, he just said yes. Oh well it was worth checking.

You can imagine my take on this now. Kind of my point - you better be sure.

[Dantheman]

Ruby is going through a pretty rough time. She's still cancer-free, but the entrectinib has had serious side effects on her bones. First, last fall she broke several toes without knowing how and part of her big toe looked mildly necrotic on x-ray. A few months ago her right heel became very swollen. All that was done was to put her in in a boot for a while and give her ibuprofen. When it didn't improve a follow up x-ray showed that the growth plate on the end of her heel had become "like taffy" and the tension on her Achilles tendon had pulled off the end of her calcaneus. She'll need surgery to reattach it.

On July 2nd she took a mild fall, probably because her heel pain made it difficult to walk. She complained of knee pain after in her other leg and her mom took her to Instacare. X-rays rays were negative but her knee continued to hurt. Now with two bad legs, Thursday morning she fell down the 3-foot section of stairs that lead out their back door and spiral fractured her left femur. She had surgery Thursday night to install a full-length plate and around a dozen screws along her femur. The surgeon thinks that she fractured her femur in the July 2nd fall based on some calcification he saw during surgery. We don't know how that fracture was missed on the July 2nd x-ray. She'll need another surgery in a few months to remove the hardware.

They're taking her off the entrectinib for now. Going off the drug is causing withdrawal symptoms on top of her surgical pain. It's also making her worry that her cancer is going to come back.

It's brutal to watch her go through this. The worst part is that it feels like it should never have happened. I'm getting this all second-hand, but her doctors did not seem to be taking her bone problems seriously. It's my understanding that bone problems are known with entrectinib so when she had problems with her toes 10 months ago it should have been a huge red flag. To my layman's eye her heel had looked fucking gnarly for months and the doctor at Instacare on the July 2nd visit was shocked by how it looked, but it didn't seem to be eliciting any serious concern from her orthopedist and oncologist.

A kid with healthy bones would never have broken their femur in either of those falls. It's easy to criticize in hindsight, but at the very least she probably should have had her bone density tested regularly and been advised to be incredibly cautious about falls, avoid contact sports, etc., but that never happened. The medical system is incredible, but it's still deeply flawed and you need to be your own advocate if something doesn't seem right.

[Supermoon]

Damn DTM. I’m so sorry to hear that. I hope that they/you can figure something out. I have a friend with a chronic illness and her #1 complaint has been doctors not taking her concerns seriously. Finding ongoing care you can trust is unfortunately a struggle. Sending all the positive vibes Ruby’s way I can.

[grinch]

Man thats a tough read. Poor kid. I really hope this signals a positive direction for her care. Can't imagine how you must feel. Heartening!

Sent from my SM-G950W using TGR Forums mobile app

[Meadow Skipper]

Ruby is going through a pretty rough time…

Shit.

Shit, shit, shit. I hope you guys get some turnaround and good fortune soon. That sounds really, really tough.

[ötzi]

Jesus, Dan. Poor kid. I don't quite get the function of erectnib in someone who tests cancer-free as it's specifically a cancer treatment but all I did was read the Medscape entry, I don't know shit. It's clearly some pretty toxic stuff though. Hopefully getting off it helps the situation without any other repercussions. Good luck Ruby!

[Buster Highmen]

>>> Vibes, Ruby<<<

[Dantheman]

Jesus, Dan. Poor kid. I don't quite get the function of erectnib in someone who tests cancer-free as it's specifically a cancer treatment but all I did was read the Medscape entry, I don't know shit. It's clearly some pretty toxic stuff though. Hopefully getting off it helps the situation without any other repercussions. Good luck Ruby!

I'm sure they were worried about tumors reappearing if they took her off of it--she was riddled with tumors originally. She was also part of a clinical trial and I believe that contributed. But, clearly they were so focused on the cancer that they failed to recognize the gravity of the situation that was developing.

[ötzi]

It's so tough to be your own (or someone else's) advocate in stuff like this. Shit is so complicated and the people telling you stuff have credentials, experience, training...it's almost impossible not to defer to their judgement sometimes, even if you think it's questionable or wrong. I don't have the answer.

Meadow Skipper's story is another example of something similar. I mean, they're supposed to know. And how are you supposed to know if they don't actually know? When I had my surgery I was thinking along those lines, and I had zero symptoms, and I asked the surgeon, "Now, you're absolutely sure you got the right guy?" He was not amused and simply said "Yes." So I said okay. But if they were wrong he still would've said yes, so asking that question got me exactly nowhere. It's a conundrum.

[Dantheman]

No answers here, either. Meadow Skipper's story is horrifying. Suggestions would be:

Keep your head on the proverbial swivel. If something doesn't seem right, speak up about it until you get a satisfactory answer.

If your doctor seems to get offended by you asking basic questions like that it's not a good sign. If their ego is too big to recognize that they're fallible and surrounded by a huge team of others who will regularly make mistakes despite all their best efforts Murphy's Law will intervene eventually. It's your health on the line, not theirs, and you should be concerned because medical errors are the third leading cause of death behind heart disease and cancer.

Recognizing the flaws in western medicine is no reason to dive head first into the cesspool that is most alternative medicine.

[gravitylover]

Oh man Dan, that sux

[ill-advised strategy]

Fuck cancer............those words don't begin to express the level of ass whooping that disease deserves. I am sorry for each and every one of you going through this shit. I have avoided this thread for a long time because I struggle reading everyone's posts, just hits to close to home on to many levels for me. My best friend has lived with stage 4 lung cancer for the last 7 years, never smoked a day in his life, marathon runner, patroller, I don't get it, diagnosed at 35. He's been struggling hard the last 6 months and especially the last two weeks. Fuck.

You know…weird particulate carcinogens in the lungs stay a long time.
Dude could have had a weird exposure to asbestos dust and never realized it. Fucked up apartment, fucked up school classroom, driving past some demolition site every day for a year…. Whatever.

[ill-advised strategy]

And dang…you guys.

I need to read this thread more. I didn’t realize everything you’re all dealing with. Pretty heinous.

[Dantheman]

You know…weird particulate carcinogens in the lungs stay a long time.
Dude could have had a weird exposure to asbestos dust and never realized it. Fucked up apartment, fucked up school classroom, driving past some demolition site every day for a year…. Whatever.

Asbestos exposure is usually pretty specific to mesothelioma. Radon is a very real thing, though. And with cancer you should never discount genetics and bad luck.

[ill-advised strategy]

Yeah…true.

It’s just one of those things where it’s hard to even know what you’ve been exposed to.

We just get so wired to associate some diseases with specific behaviors…my paranoid conspiratorial tendency gravitates to the fact that giant corporations and industries are kind of flooding the modern human living spaces with carcinogenic compounds, then their media is hammering us about the instances where it’s our behaviors causing cancer but never mentioning the cloud of chemicals and dusts in which we live our overstressed overworked lives.

[jono]

No answers here, either. Meadow Skipper's story is horrifying. Suggestions would be:

Keep your head on the proverbial swivel. If something doesn't seem right, speak up about it until you get a satisfactory answer.

If your doctor seems to get offended by you asking basic questions like that it's not a good sign. If their ego is too big to recognize that they're fallible and surrounded by a huge team of others who will regularly make mistakes despite all their best efforts Murphy's Law will intervene eventually. It's your health on the line, not theirs, and you should be concerned because medical errors are the third leading cause of death behind heart disease and cancer.

Recognizing the flaws in western medicine is no reason to dive head first into the cesspool that is most alternative medicine.

That whole post should be stickied for anyone just starting the fight. Reading Meadowskipper's account makes me feel lucky that the few docs I dealt with who were off the mark were so obvious about it. Giving conclusive opinions while asking for more tests (my case) is such an easy red flag compared to a lab mixup.

In some cases (like skin and GI) a trained eye can give a good guess as to whether something looks like cancer or not. That seems like a rare tool for confirming lab results since a second opinion so rarely involves a second biopsy. Ugh. Sorry Meadowskipper, that sucks.

[jono]

One for the win column: clean scan this week marks 4 years with no evidence of disease for me. Hopefully just one more scan next summer.

That's 9 clean results and it's amazing how much of a relief these still are. My wife is still on pins and needles every time.

[Meadow Skipper]

Sweet, jono.

[PNWbrit]

A friend I've worked with for 22 years died yesterday after a three year battle with stomach cancer.

That I might have his bravery and strength...

I'll miss you JP.

[BmillsSkier]

I’m sorry for JP and you Brit.

Peace to you and his.

[mcski]

A friend I've worked with for 22 years died yesterday after a three year battle with stomach cancer.

That I might have his bravery and strength...

I'll miss you JP.

Vibes. Strength for sure. Stomach cancer is brutal

[GetAmped]

Yesterday I was reminded that, after 7 weeks of radiation and chemotherapy 9 years ago, I continue to be cancer-free. If anyone is out there going through the same or has a loved one fighting this battle, have hope. And since you are reading this, take a few moments to appreciate your life, find the joy in it, and do something every day to share that best part of it with those around you.

[yeahman]

Yesterday I was reminded that, after 7 weeks of radiation and chemotherapy 9 years ago, I continue to be cancer-free. If anyone is out there going through the same or has a loved one fighting this battle, have hope. And since you are reading this, take a few moments to appreciate your life, find the joy in it, and do something every day to share that best part of it with those around you.

That's awesome, way to go. And as much as I try to appreciate every day, it never hurts to get a reminder.

[Dantheman]

One for the win column: clean scan this week marks 4 years with no evidence of disease for me. Hopefully just one more scan next summer.

That's 9 clean results and it's amazing how much of a relief these still are. My wife is still on pins and needles every time.

Great to hear.

A friend I've worked with for 22 years died yesterday after a three year battle with stomach cancer.

That I might have his bravery and strength...

I'll miss you JP.

So sorry, Brit.

Yesterday I was reminded that, after 7 weeks of radiation and chemotherapy 9 years ago, I continue to be cancer-free. If anyone is out there going through the same or has a loved one fighting this battle, have hope. And since you are reading this, take a few moments to appreciate your life, find the joy in it, and do something every day to share that best part of it with those around you.

Great to hear x2.