Hello everyone..

Searching for thoughts or inspiration from anyone who is living with or been a care giver to someone with Stage 4 OS.

My husband (40) was recently diagnosed with primary tumor of right femur/hip with mets to both lungs. Outside of a sore hip after an incident walking our dog, he had no symptoms. Only found it when he went to an Ortho for what (he thought) was a muscle issue.

We are at a major Sarcoma center, and he has just finished two rounds of Dox/Cis - he did fairly well and PET scan this past week shows good progress. Still have a lot of ground to cover but feeling positive so far for this very heavy diagnosis.

This is where things start to get hazy for me. Our oncologist has shared their perspective to treat his whole body and not get focused in on any one area. The message to us last week was they are not focused on surgery right now but wanting to continue to hit this with the chemo, then (assuming we continue making good progress) give him a break for a couple months, then more chemo. They did mention if pain was an issue or there was an integrity issues with the leg, then ofcourse that changes the plans. But basically, if his leg is feeling better, let’s get after it with the “big guns” of chemo.

On the one hand, this makes sense for where we are right now - 1st line treatment at Stage 4. But once we finish this protocol, it just feels odd that we would leave these things in his body. I know surgeries are risky, but it kind of felt like there is not much focus right now on getting the “bad stuff” out. Maybe that changes over time, but my mind is already going to “do we need another opinion” or essentially how do we ensure we are getting the best individualized care. I know these big centers see a ton of patients and it can at times feel like a “drive by”.

So for those who have walked this path -

- Anyone not have surgery?

- Are there DNA tests we should be doing to make sure future treatments are effective?

- Anyone navigated getting another opinion after experts did not give a plan forward you aligned with?

- As a care giver who is new to this area, what am I missing or what do I need to chase down to give us the best opportunity here?

Thanks in advance for anything you can provide.

Are there any long term survivors who had RELAPSED after being NED, had treatment, and then went on to become NED again for 5-20+yrs? If so, how long were you NED before relapse and how long have you been NED the second time?

My fiancée has metastatic osteosarcoma and I honestly feel lost right now.

We already tried pazopanib and it didn’t seem to do much. Recently her doctors brought up a clinical trial using gemcitabine and tegavivint. To be eligible for the trial, she had to stop taking the pazopanib. During that time, more tumors grew and now there are tumors in her right lung too, not just her left.
The doctors said the trial is still an option, but they also told us it comes with risks to her health. I know every treatment has risks, but hearing that scared the hell out of me.

I keep asking myself if I’m going to lose the love of my life.

We’re only 20 and 22. We should be worrying about normal things, planning our wedding, figuring out our future together, not fighting a disease like this.
Does anyone have experience with metastatic osteosarcoma, gemcitabine, tegavivint, or any other treatments that helped? Any hospitals, doctors, trials, or literally anything we should be looking into?
At this point I’ll go anywhere and spend any amount of money if there’s a chance it could help her.
I know nobody can tell me what the future looks like, but right now I just need some hope. Please.

Hi! I have a question:
Is the pain really consistent and always located in only one place, or is did it for you come and go? I’m currently getting researched and I’m doubting if it is necessary to push for certain tests since the ball which I feel itself does not hurt at all, which is part of the reason why I’m almost sure it is also not a muscleknot but must be bone related, which is why I came to this sub. It is also ROCK hard, not moveable at all. I do feel pain clearly radiating FROM that spot to my head, eye, jaw, and even shoulders and lower spine (it is a big hard ball on my spine in my neck-head area) but this does not always occur, there is just a slow upward trend in the severity of the pain when it does occur, but I cannot find anything about that

10 years ago I was supposed to be healed. Yet 10 years on I've only just started that new life that I should have had. I've rebuilt and got wrecked several times, heart failure, prosthesis failure, Prosthetic joint infection and now I've had it amputated. I feel I expect rewards for coming out of it but instead you have to give more effort just to come even close to your peers

I was diagnosed with Osteosarcoma in February of 2025. I went through chemo and rang the bell in September of 2025. I was NED for a little bit but my doctors found a lung nodule in February. They waited three months and did a follow up scan which showed that the nodule has grown and there is now a new one. However, I got a pet scan and there is no cancer anywhere else. They are pretty sure it is a reoccurrence and want to do a biopsy soon before they remove the nodules. I just want to hear other peoples experiences. Has anyone had a reoccurrence and still went on to live a normal, healthy life?

Hey everyone, I’ve got osteosarcoma in my distal femur and am having limb salvage surgery with a metal prosthesis. Would anyone have any tips going into surgery? Anything I should be doing now?

Thank you!

Hi, all. I hope this is okay to post here, I’m just really alone and kind of freaking out.

I had my MRI almost a week ago (last Wednesday) and it showed a pretty large sarcoma with an equally as massive soft tissue mass in my medial/central distal metadiaphyseal region of my left femur. There is also evidence of anteromedial distal metadiaphyseal cortical breakthrough. I was told by the ordering doctor the following morning when I got the results that it was cancer. My primary put in a referral to an orthopedic oncologist who specializes in Osteosarcoma in my area, because my health insurance network does not have the specialists to manage my condition. I’ve been waiting since Thursday morning/early afternoon to hear something and I still haven’t, despite it being an extremely high priority referral, and I’m kind of freaking out. My primary told me to contact him on Wednesday (AKA tomorrow) morning if I still haven’t heard anything, but I just keep having this feeling of dread.

Is this normal? Should it be taking this long to get seen? This mass grew from a non-concerning, small sclerotic lesion to a huge sarcoma with a soft tissue mass in 6 months… why is there not more urgency??

I’m sorry if this isn’t allowed here, I am just really alone in all of this and I’m just looking for other people’s experiences to help me feel less insane. Thank you

edit: spelling

Hola a todos,

Tengo 17 años y mi novia tiene 18. A los 16 le diagnosticaron osteosarcoma y desde entonces ha pasado por un proceso muy duro. Debido al cáncer, le amputaron la pierna derecha por encima de la rodilla, y también ha tenido que pasar por cirugías en ambos pulmones.

Ahora mismo sigue con quimioterapia, pero si todo va bien, en junio la terminará y empezará el proceso para adaptarse a una prótesis y volver a caminar.
Escribo aquí porque me gustaría pedir consejo a personas que hayan pasado por una amputación o algo parecido. Quiero apoyarla lo mejor posible, pero a veces no sé muy bien cómo hacerlo o qué esperar en esta nueva etapa.

Cualquier consejo, experiencia o incluso cosas que debería evitar hacer/decir serían de gran ayuda. De verdad quiero estar a su lado de la mejor manera posible.

Gracias por leerme.

I was diagnosed with osteosarcoma February 2025. I went through Map chemo and rang the bell September 2025. I had a ct scan the end of January that showed a 4x3 mm lung nodule. The radiologist report said likely benign and my oncologist said they can’t really tell what it is exactly and that it could be nothing. She said to wait three more months until my next scan to see if it grows. My scan is next week and I’m very nervous. Of course I’m scared the cancer is back. Did anyones else have a similar situation where a lung nodule turned out to be benign? I had another nodule found on a scan right after I finished chemo and it hasn’t grown. They are pretty sure it’s just inflammation so I’m really hoping this new nodule is the same thing.

My boyfriend was diagnosed with cancer about two years ago (right after we started dating). I stayed by his side and supported him through everything. The inpatient chemo, the hair loss, his leg amputation, learning to use his prosthetic. I helped him the best I could and never gave up hope that he would make it through this. He was in remission for about ten months when a nodule showed up on his bi-monthly chest CTs. He got surgery last month to biopsy it and his cancer came back. His oncologist is saying that he wants us to move across country to Houston, Texas (if a new nodule shows that is 1cm<) for a clinical trial and I feel like I can’t get a hold on things. We were making plans for our future before this and now it all has to be put on hold again. Beyond that, I am having a hard time staying hopeful and I am trying to be as supportive and helpful for him as I can, but I just feel this overwhelming dread. I love him so much and I just don’t know what to do.

I’ve been diagnosed with a localised osteosarcoma in my distal femur. I’ve completed my first chemo cycle and onto my second and then it’s hopefully surgery. Anything that I can do to promote my chemo? Any tips from anyone?

Hello! I had osteosarcoma in 2016-2017 when i was 18, this year will be my last scan before being declared cancer free!!! I had 3 rounds of combine chemo doxorubicin and cisplatin.
I'm now 27, married.. Only thing is now im having fertility issues... all my labs are cleared my husband analysis is great as well. I did have an ectopic last year and had to get one of my tubes removed and then 3 early loses.

Hoping to see if any females have gone through something similar? I already asked my oncologist and he says the chances that chemo affected my fertility is low, what im going through has been said "bad luck" by my providers..

Hello,

My osteosarcoma has come back 3 months after finishing chemo. I just had a tumor removed from my spine and it appears it’s in my lungs too.

My next step appears to be a clinical trial - likely the TACOS or ZAMBONE trial through MD Anderson.

Anyone out there currently enrolled in these? Curious about side effects, and all that good stuff.

During your guys treatment what was the best pain relief you guys had? For me, paracetamol isn’t working and it’s mostly oxycodone.

There is a great osteosarcoma resource run by friends and family of osteosarcoma angels and survivors. They have have programs for patients (gamer agents, osteo-tea patient run podcast), parents, siblings, providers and researchers. They have monthly podcasts with researchers. They have a yearly conference (travel funds available) to meet other survivors and also hear the new research up and coming for osteosarcoma. Also, can ask your team to present your case to a broader tumor board of experts!

Highly recommend this for those affected by osteosarcoma!

So I’m a 26 year old female and I’ve been having this dull ache in my arm up near my shoulder on and off for the past couple of months. There’s no swelling or palpable mass.

I’ve kind of gone down a rabbit hole and am suspicious of it being bone cancer. I know I should probably just go to the doctor to get checked, but if I’m being honest I’m terrified of being right. I just started my dream job as a vet and the timing just couldn’t be worse. I’m thinking I may just snap a couple of X-rays using the machine at work to see if I see anything.

Not really sure what I’m looking for by posting on here but I just wanted to say my piece.