My Current Protocol——-All Thoughts/Criticism Welcomed

[Rikimaroo]

I updated my post with a lot more information. opdivo/yervoy this is good, I hope it works.

[Claudine]

I'm so sorry your alternative protocol didn't work out, pfccr, albeit not completely surprised - when you see that even pure poison (aka chemo) is often not enough... BUT it seems like you've got a good plan in place, SBRT works very well on lung mets. I am not familiar with opdivo/yervoy, hopefully you get good response from that. Sending positive thoughts your way XXXXX

[prayingforccr]

Guys……THANK YOU FOR ALL THE SUPPORT

Will continue to update.

[utahgal7]

prayingforccr:

Wow, that's tough. I was hoping the alternative treatments would help you. Based on your previous posts, it seems like the alternative treatments maybe worked for 6 months (???) for you. There are so many different pathways for cancer to spread that it seems almost impossible to target all of them (especially in cancer that has already metastasized). It seems like you have a good plan in place with SBRT and Opdivo/Yervoy.

Again, I am sorry for the disappointing results. Keep the faith. We are all in this fight together.


Take care of yourself,

Paige

[MadMed]

Glad to hear there's a plan forward pfccr. I sincerely hope it produces good results.

Rikki! I hope things work out, thank you for sharing your fight, it is inspiring. I know that and a nickel does not buy you anything, but it has an impact on others. I am not an optimist by nature but it feels that big changes happening in CRC, new treatments, we may be on the cusp of something big!

[utahgal7]

MadMed,

I agree there are big changes happening in CRC. It would be great if researchers can find new uses for existing drugs to prime the immune system in MSS patients, so immunotherapies could work better. Currently, there is a trial underway at the City of Hope testing regorafenib, ipilimumab, and nivolumab in MSS CRC that has progressed on prior treatments. I am super excited to see the results of this trial.

[MadMed]

Thank you Utahgal, I found the link for it:
https://www.cancer.gov/about-cancer/treatment/clinical-trials/search/v?id=NCI-2020-01818&r=1

It would be awesome to extend immunotherapy to MSS!

[prayingforccr]

This is essentially what I am doing beginning in July:

https://clinicaltrials.gov/ct2/show/NCT04575922

[beach sunrise]

Man! I was hoping for a good scan based on what you were doing.
I know it is deflating and depressing but you still have a handle on it because you have another plan.
That's a very good thing!

[Rock_Robster]

Maybe there’s a middle ground here. I’ve done a fair bit of chemo and agree it’s no life from now until the end, whenever that is. But in the non-curative setting it also doesn’t necessarily make sense to just throw full-blown chemo at it anyway. Some people with stage IV disease can stay stable on Xeloda+Avastin for years, with very good quality of life. This is my next plan if I have an (unresectable/ablatable) recurrence/spread. And maybe combining capecitabine or UFT with your existing protocols could be what makes the difference. Point is, you don’t know until you try - and if you hate it you can stop.

[prayingforccr]

I am definitely making plans to get my affairs in order and end this fight at a time of my choosing should the immunotherapy not work out.

[MadMed]

This is essentially what I am doing beginning in July:

https://clinicaltrials.gov/ct2/show/NCT04575922

Wow, this is run out of Mass General here in Boston and it seems to be at the cutting edge of treatment. It would be awesome if it worked for you like the other MSI trial. Please let us know how it goes.

[prayingforccr]

This is essentially what I am doing beginning in July:

https://clinicaltrials.gov/ct2/show/NCT04575922

Wow, this is run out of Mass General here in Boston and it seems to be at the cutting edge of treatment. It would be awesome if it worked for you like the other MSI trial. Please let us know how it goes.

I am SO GRATEFUL that this is available to me.

Will it work? Who knows?

Side effects look nasty, but it’s worth a shot.

[beach sunrise]

Since your weight is really good, fasting during might be of benefit. It puts your body in protective mode.

[utahgal7]

prayingforccr:

What are doing to tame inflammation? Have you had a c-reactive protein test recently? As you know, inflammation drives cancer, especially colorectal. In my case, whenever I have high inflammation, my lung nodules grow and my CEA rises. I know not everyone is the same. Just thought I would mention inflammation.