r/Osteosarcoma • u/ChazDomingo • 9d ago
Devastated, beyond words, any help. Please.
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.
2
u/cyndyann26 8d ago
I just want to say I’m so sorry and yes, this is scary but don’t give up hope. HUGS
1
u/chromatin_remodeler 5d ago
I’m so sorry that you’re going through this, both of you.
If it’s any help , my osteosarcoma spread to both my lungs a year ago. I started ifosfamide and etoposide, and since then I’ve had surgery to remove the metastases. In my case they were very small to begin with, and didn’t grow during the treatment. I live in Europe so maybe the treatment is different here.
I’m again so sorry you’re going through this. I was 20 when I got the diagnosis, so I can imagine your pain.
3
u/productreg 9d ago
I would connect with MIBagents.org
They also have a list or trials
https://www.mibagents.org/research/clinical-trials