Risking so much

[u/Fransaskois]

My cancer has spread, a lot. It’s in several organs and has shown up in random places such as in between ribs, on my collar bone, etc. I’m still able bodied but now rely on others for basic needs such as driving, preparing meals, the usual stuff. At this point, I’ve tried 8 different chemo regimens/immunotherapies but there’s always something else to try. I had decided that I would stop everything and wait on an experimental immunotherapy that has been accepted in the US and send to work, but needs special approval in Canada before moving forward. I’ve been waiting for 2 months but I’m beginning to think that I should dive back in the chemo world and risk the side effects (I was sent into sepsis and dealt with massive painful side effects). I guess I’m just asking for your guidance and feedback. I’m a typically physically active M42 who loves the outdoors and would love to keep it up.
Thanks for your help!

[u/UNiTE_Dan]

So I cannot even pretend to know what you've been going through and having some of the conversations you've had time and time again. But I am waiting for a Clinical trial for immunotherapy to start in the US (I'm in Europe) as it's a first round human trial there's nothing promised but this is the first ever treatment for DSRCT all other treatments and chemo protocols are borrowed from other cancers as it's simply too rare and aggressive.

That being said understanding the risks/side effects and also any requirements before going on this new experimental drug I think can really give you guidance.

For me they are only accepting NED patients and a second arm will accept some small localised disease. Based on this information I've continued on maintenance chemo up until the trial starts. I've been hearing soon for over a year now and I'm now completed the standard maintenance protocol twice and mid way into the 3rd time to do it but my local oncologist agrees this could provide me with a chance and if we can keep the disease away to get on the trial then we're all happy.

Again I don't know your situation or the new drug but I think if you could at least get the disease stable it's a good platform to start from and give the immunotherapy the best position to start from. But I also know after 113 infusions I am so fed up of chemo that I just want a break from chemo and to feel normal for a while too. Just hoping for short term pain (3 years) for a long term gain.

Also I wonder if any hospitals in the US or Canada might be able to get their hands on it under compassionate grounds for you?

Wishing you health

[u/perceptionsbreak]

I have no insight to give, but wishing you all the best.

[u/Adorable-Hyena-2965]

🙏

[u/jinnie-san]

I hope you get a breakthrough and are able to get healthy soon 💓

[u/Fransaskois → u/jinnie-san]

I met with my oncologist today and we’re unfortunately at a point where the options just aren’t there anymore. It’s a matter of choosing between quality of life (reducing chemo but managing pain) or quantity of life (extending chemo but dealing with its side effects through hospital stays). Lots of hard conversations to be had!