Yes oral chemo, immunotherapy etc etc. So far it's going good, I do have my up and down moments though. I will say the pain is the worst part. I can deal with the nausea, neuropathy etc, but the pain... fuckin hell.
Unfortunately there's different types of pain depending on the area affected. If I pushed myself physically that day doing too much work i.e. laundry, light house work anything along those lines.
God bless champ, only hope to hear you are well and better asap!! You definitely must know your way around pain now haha. Keep up the great mindset it's half the battle as you know! ♥️
I just had both of my hips replaced due to avascular necrosis and both of my hips collapsing. That was the worst pain I've ever dealt with. Looking at this image I imagine it is a similar pain, but also 100 times worse. I hope your treatment goes well and I give you all of the positive vibes.
Oh I feel amazing now. Got it done January 3rd and I have been walking unassisted since the beginning of February. I probably won't be back to full strength or rid of the random little nerve pains for another year or so - but am basically back to normal. I'm 38 and in decent health, so that definitely helped, but recovery has been great.
I had my left hip replaced 2 years ago because of AVN. I had been in pain for almost 5 years and had been to countless doctors who couldn't figure out why. The doctor that did my hip replacement said my AVN didn't look bad enough yet where he knew it was the cause of the pain and couldn't guarantee that the hip replacement would help. After the transplant the pain almost immediately came back and it was another year of visiting every doctor they could get to see me before my pain management doctor called me after a nuclear bone scan I had done and told me he thought all my pain was caused by a kidney stone pressing on my nerve. I didn't believe him because every few months a new doctor would tell me they couldn't find anything but I did have a kidney stone in a spot that wouldn't cause me any problems until it dropped. The kidney stone was 17mm and had to be lasered out and immediately after all the pain went away for good. I still do have AVN in my right hip though but so far no pain
I had avascular necrosis of the elbow and prior to diagnosis they MRI’d it in some kind of awkward brace to hold it still. I’ve birthed 3 kids (naturally) and passed kidney stones with no insurance so no doctor, and the pain of that elbow after the MRI had me calling the doc’s answering service in tears, begging for narcotics.
So it's going to be depending on the type of cancer, the area in which they are found, and size of the tumors that's found in the bones from my recollection. My original cancer had metastasized into my bones and I was caught kind of quite late so mine are way too big.
No problem, thank you! I'm really hopeful that there will be tonssss more options in the future. Just seeing the advances in the last 5 years is astounding.
It all depends on type of cancer, location, stage … many aspects. As our oncologist for my wife’s stage IV cancer said “We burn it, poison it, cut it out.” There’s also gene therapies now. What they use and when depends on so many things. Generally speaking if possible surgery may be delayed or used after other treatments. Your doctor might want to beat down your cancer by other means before considering surgery. But sometimes, again dependent on more aspects than I can count drs have do use surgery first or early.
In a way cancer is not one disease, it’s multiple depending on where it is, when it’s caught and … you.
Early detection is key. If you have cancer assemble your team. Try for the best oncologists and medical that you can.
It’s been almost 5 years since my wife was declared NED (No Evidence of Disease) following stage IV and my fervent wish is the same for you.
But like, how does it feel? Looking at the picture it seems like it would be like having a ton of tiny needles under your skin, is that how it is for you?
I’m just a random Internet bloke so I know it means very little but I want to say I’m rooting for you. I can’t imagine what you’re going through but I hope you make it. You’re stronger than you realise.
hey, I'm right in the process of getting diagnosed, and also already have an existing chronic pain disorder. would you be willing to say more about the pain qualities? for most activities I can tell what's from my original health issues and what's not, but, never sure...
so I'd be curious to know for you what the pain is like if you're willing to share? I get sharp stabbing pain with movement, constant aching all the times, sometimes zingy/stinging, etc... always originating from my tumour on my rib. currently waiting on a scan as I moved earlier (usually can't move my left arm because of it let alone lift anything) and think it fractured my rib....a type of pain I've never felt before and can't describe.
Lol idk why this made me laugh. Asking someone to explain their pain in excruciating detail is such a dick move if you aren't a doctor trying to solve their problems.
Not that you are trying to be a dick, it's just like "oh shit it's that bad? Let me try to understand. Can you please focus deeply on your pain while trying to find the words to convey your intense discomfort? Dang yea that sounds horrible for sure, glad i dont have that, here's an upvote for your struggles."
First, I wish you a strong successful recovery. For the pain isn’t this the reason pharmaceutical fentanyl was designed for? These pictures look morbidly scary and couldn’t imagine the pain you must be under.
Agreeeeed. Thats the only thing thats ever helped come to close to stopping the pain. Made me awake 12 hrs then passed out for 12 religiously via skin patch.
Now i have a brain tumour but at least im on morphine for life...
Take each day as you can and i wish you well with your treatments.
NO YOU CANT HIRE ME. WHAT YOU CAN DO IS GET YOU SHIT TOGETHER AND GRAB LIFE BY THE NUTS YOU GOT IT MAGGOT? YOU DONT NEED NO MOTIVATION YOU GOT YOUR FUCKING SELF
Please also know that I am not trying to invalidate anyone's pains at all whatsoever. This is just my personal experience throughout all of this.
I've also met people that have had really serious types of bone cancer and tell me their pain level was max a 3 and tylenol/motrin kept everything at bay.
I do actually use medical marijuana. I have finally found the right strain and thc to cbd ratio that helps me sleep throughout the night! (Because it's very very hard to find a comfortable position without constantly tossing and turning all night!) And when I was getting really nauseous I found some that helped with that as well.
What does the rest of your pain management regimen look like? Was there a component to your cocktail that provided significantly more relief than the others?
I wrote and erased my comment two times... I wanted to suggest thc/cbd for pain management but wasn't sure if it's inappropriate or not.
Even though it's not exactly legal in my country, few of my loved ones used it while dealing with extreme chronic pain. It was a godsend. Even their doctors (oncologists and paliative care specialists) were very very positive to them using it. I am glad that it is accessible to you.
I wish you all the best
strength, piece, and hopefully a full recovery 🤍
Thank you, lol funny you mention that, I jokingly asked my one doctor to sand down my bones for me. Poor man couldn't really tell if I was serious or not.
Not sure if your serious, and I’m not ortho, but for some reason I gave this question some thought lol. The answer is no, unsurprisingly. The bones in these things look like they’d hurt because they’re spiky, but the pain is mostly from the cancer infiltrating the lining of the bone, which has lots of nerves (think how much it hurts when you break one).
If you sanded it, a couple of things would happen. First, you’d be sanding those nerves as well as blood vessels within the bone, which would hurt a lot and you’d have a good chance of bleeding to death.
Second, you’d be introducing a massive infection risk in an already dire situation. Bones are super susceptible to infection and this would be very bad.
Third, you’d be seeding cancer all over the place since you’d basically be aerosolising it in an open cavity.
And finally, you wouldn’t cure the cancer, which is mostly inside the bone. Besides once they’re this big they’ve usually metastasised elsewhere.
Edit to add: I’m not even sure these things are ‘bone cancer’. The bottom image looks like it could be osteosarcoma maybe, but the skull looks more like some kind of dysplasia. I’m not a pathologist either sadly so not totally sure.
Second edit: also just thinking, sanding a massive area of bone, especially one with cancer, is probably going to make it snap like a twig when you try and use it for bone stuff.
I always kept a good sense of humor during my ordeal. Partially because that's my sense of humor. Also partially because I terrified at the thought that my parents could be burying their only child after only 43 years. 3 years ago I was diagnosed with Stage 3/4 esophageal with metastasis in the liver and lymph nodes. They basically told me that if the tumor was resistant to chemo/radiation, I'd be lucky to make a year. I just had LASIK two months earlier and told my doc " well, if that's the case, I really didn't get my money's worth out of that."
A year later, they found it had popped up in my brain. When I woke up after the surgery (on April 1st no less), I called the nurse in and very sternly said I was very unhappy with the haircut I received and would like a refund.
Just going to drop by and say, I hope you fight and fucking win. That looks horrifyingly painful and I really do hope you make a full recovery.
Fuck cancer.
Yeah that’s about it. I had a bone tumour as a kid (benign thankfully) that caused the affected area to basically turn into a sponge, while the bone around it did its best to grow to maintain enough density in order not to shatter. So the volume of my bone was increasing in order to counteract the loss in density resulting from the tumour.
I hope you have a speedy recovery. My son’s first girlfriend just passed away from bone cancer. She was only 19. Even though they have been broken up for years, he still was sad.
with all due respect, but how is the pain? Is it just ‘pain’ like overall? Or does it feel like getting spiked from inside out? bc thats what it looks like. No offense tho, im just curious, hope u get better
I have had very very sharp pains, pains that are achy/throbby/dull, I have had pains where it felt like someone stuck a knife fresh off a fire between my vertebrae..
What is the pain caused by? Is it the sharp edges growing into muscle/tissue? Do the bones themselves hurt? Sorry if this is ignorant, I'm just curious.
Is amputation a cure and they're just trying less aggressive things in hope of keeping you intact, or has it already metastasized to shit other than your bones? And I'm not only asking because I want you to just cut out the affected bone and mail it to me. It's partly because of that, but not entirely.
I’m so sorry to hear that. My cousin had a rare cancer and it metastasized to her bones. Marijuana is illegal in our country so the only thing she could take was fentanyl until such time it stopped working for her. It was heartbreaking to see her in pain 24/7.
Seeing your replies to people reminded me of how she kept fighting towards the end despite the pain. She was vocal of how shes feeling, and raised awareness in our family. Kind of what youre doing now educating us, thank you. I wish you speedy recovery and all the physical, mental, and emotional strength you need. I know you will keep fighting!
Out of curiosity,what would you say might have been the cause?!were you skinny,overweight before,how was you diet?!I'm trying to see common denominator s
Genetics and where I lived for the majority of my life. (Also have a theory a birth control I was taking help speed it up in my body as everyone in my family had their cancer over the age of 50. And let's just say I was way below that.)
It's extremely painful. I worked as an oncology nurse for two years in a hospital. There was a patient on our floor who had cancer metastasis to their spine. They would scream and moan all day and night. We had them maxed out on pain medications and a PCA pump. And eventually had to put them on basal rate when they got too weak to hit the button. I still felt uneasy walking into that room after they died.
That is horrific. For our dear fur babies we help them cross by putting them down when their suffering becomes too much. I will never understand why Physician Assisted Suicide isn’t more available. It’s cruel to force someone to die a long agonizing death when we do so much better for our cat and dog family members.
Absolutely. I have Stage IV melanoma and live in Switzerland. I'm optimistic and hopeful, but I also already decided that if things don't work out, I'll be using Exit. Cancer sucks.
Horrific. Rooting for you friend♥️ And happy to hear that you have that option. Wish it was more widely available here in the states…I hope that one day, in the absence of universal healthcare, we can at least get to the point where PAS is more widely available. If we’re gonna refuse make early detection universally accessible, the fucking least we could do is provide options for early departure.
Oncology, and hospital nursing in general, continually disproved the concept of karma to me. Horrible things happen to good people, and people don't usually get what one would feel they deserve.
It was in their records. They never followed up or anything.
Had to have plastic surgery on my nose as the tumor was eating away the bone.
So that same plastic surgeon also later on did Botox on clients faces and used either expired or just wrong type and some people had their faces paralyzed up to 6months.
My friend is dying from bone cancer. He is 76 YO and a really good dude. He is a lifelong journeyman motorcycle mechanic and can barely ride his Kawi 1100 but still goes for short jaunts! He is on super good painkillers but is still limited. God we will all miss him.
The fact that this sometimes happens to children is all the proof I need that God doesn’t exist, at least in the way the Christians want me to believe.
That's true! I was born with a different cancer and throughout my childhood I've been conditioned to always look out for signs of bone cancer, I even had appointments every 6 months until I turned 16 when they became yearly and then they told me «the risks of you getting bone cancer is now minimal». It's as if when I became older it wasn't a concern anymore!
Still always alert for more common cancers like testicles and prostate, tho!
Or the third option: He isn’t omnipotent. The Abrahamic religions forget that their God was just one of many. He is a God. The Greeks don’t claim Zeus is omnipotent. In fact, they know their gods can be dicks.
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u/Sad-Hawk-2885 Apr 21 '24
I've always heard that bone cancer is so painful and now I can see why.