The Colon Club

Steph20021..Ugh, well that was not response I was hoping for. I am hoping for good news on your next CT and that the chemo is working. Do you have any clinical trials in mind? Were they surprised the radiation didn't get rid of the ab/pelvis stuff? I thought this treatment was supposed to be extremely effective.

Steph20021. UGH, not the response I was hoping to hear. I am wishing you the best on your CT results. Please let me know the outcome. I thought the SBRT was supposed to be every effective...were they surprised it didn't not eliminate the mets and spots in the abdomen?

Well the radiation doctor said we could hope for a bit of shrinkage, and I may have gotten minimal shrinkage but mostly we were hoping it to help with the pain that I was having which was increasing at the time in that area. So for pain management is really what we were after and anything else would be a bonus. Not sure why they weren’t expecting more shrinkage.

Yes I have a couple trials in mind, my friend with metastatic breast cancer is trying to get into this one which I am also eligible for:
NCT03289962
But also curious about this one specifically looking for MSS patients: NCT03473925
Then of course the Octane test trial I want to do definitely: NCT02906943
What about you? Any trials being considered?

rwightman wrote:Steph20021. UGH, not the response I was hoping to hear. I am wishing you the best on your CT results. Please let me know the outcome. I thought the SBRT was supposed to be every effective...were they surprised it didn't not eliminate the mets and spots in the abdomen?

Steph, I responded to your post 2 times and it won't post...Good Luck on your scan results. Please let us know how it went.

I got my scan results on Thursday and the tumour in my left abdominal wall that is growing into muscle has gown from 3.9cm to 4.5 cm which is a lot by my standards. The infected lymph nodes and the rumours in my pelvis/bottom of my small intestine where it meets my rectum all thy other stuff is stable.
She said on the whole she wouldn’t call this progression and it looks pretty good but that she would suggest we look at trials and if there’s a phase 2 one open at princess Margaret that we do that and can then come back to folfox later. But while I’m still healthy enough for a trial let’s do one. She is interested in getting me into the panitumumab aka vextibix phase 2 trial here:
https://clinicaltrials.gov/ct2/show/rec ... e=1&rank=1

We are waiting to hear back to see if it’s still recruiting as it was posted three years ago. Fingers crossed.

Steph, stable is good? Had you ever considered a second HIPEC? Sounds like most of your stuff is limited to that area. Going back to the SBRT conversation - did it not work at all with ab wall tumor?

Steph, I see you did reply the rad not working on the ab wall tumor. Hmm... I am curious as to what you decide to do in reference to the trials. Surgery out of the question?