Osteosarcoma survivor (so far); tips on pain

Hi all,

I am a 50 year old woman, was diagnosed in 2016 with osteosarcoma in my left femur, and have been through lots and lots of treatment.

I want to say right off the bat, if you are a cancer newbie and might be scared of hearing not-ideal outcomes, maybe don't read any more, ok?

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So, one thing I think it's important to note before I continue my story: survival rates are really good for osteosarcoma these days. And there are lots of different varieties of sarcoma, and probably subtypes of osteosarcoma, they are still finding out. Some respond really well to certain types of treatment and some don't. But there are plenty of long term survivors out there!!! Having said that, my story is not an ideal outcome, and I am mostly active on the incurable cancer forum.

However, if anyone has any questions about surgery, chemo, etc, I am more than happy to share my (extensive!) experience.

One immediate tip I wanted to share was about pain control: orthopedic pain is bad stuff. I know, everyone wants to not be taking medication. But there comes a point where your health and quality of life is affected by pain. If you're in pain, you tend to not move as much, which is not at all good for your health, so it's important to take that into account. Plus prolonged pain can lead to depression. It's one thing to power through a temporary injury and quite another to have an orthopedic surgery with possibly months of recovery, depending on your situation. So 2 things my medical team shared with me: 1. It's easier to keep pain from coming back than it is to bring it down once it's started again. So if you are in a situation where you are expected to be in pain (like directly after a surgery), you probably will do better to take your pain meds whether you are currently feeling pain or not - to avoid it happening in the first place. There will be time to taper down afterwards; and 2. some of the side effects of opioids, like the stupid feeling, may go away over time. So if you anticipate having to be on pain meds for quite a while, it doesn't mean you will be stupid the whole time.

I had the usual treatment for this cancer, which is first chemo, then surgery to remove cancer and place metal rod in my leg, then more chemo. I have had lung nodules pop up and have had 4 lung surgeries to remove those. I also did a trial of inhaled chemo, and tried chemo with hydroxychloriquine. 

It looks like I'm out of good treatments now, am forgoing what's still available as it will only extend my life a few months and will make me sick. So just living my life and soaking it all in.

Hope you all are well and your treatment is ridiculously effective!

PatriciaV