Achilles Torn wrote:Hi Beth,
I was sorry to read about your lymph nodes. I think I read on a previous post you are MSI-High ? I might have that wrong - but if so it may be why FolFox didn't work and should be an indicator for immunotherapy.
I'm in BC as well.
Cheers
AT
Maia wrote:Hi, AT, bat signal received : )
I already told Beth time ago that she likely would benefit from immunotherapy, and that in Canada the way to obtain it is on a clinical trial, at the moment: viewtopic.php?f=1&t=58318&p=459238#p459197
Later, CRguy pointed her to a trial in her area viewtopic.php?f=1&t=58415&p=459896#p459872
and to all the results for Canada in the Late Stage MSS-CRC trial finder (which include trials suitable also for MSI-high, at least stated otherwise in the inclusion/exclusion criteria):
Clinical trials for CRC, mainly immunotherapy-based, in Canada: http://trialfinder.fightcrc.org/trials/ ... erapyName=
She said she's looking at NCT02060188 An Investigational Immuno-therapy Study of Nivolumab, and Nivolumab in Combination With Other Anti-cancer Drugs, in Colon Cancer That Has Come Back or Has Spread (CheckMate142) https://clinicaltrials.gov/ct2/show/NCT02060188 , which is one of the best ones, IMHO, for both, MSS and MSI-high.
Beth, it's probably the older, ongoing since 2014, immuno trial out there, for CRC. I remember the excitement when it started (we barely knew what MSS and MSI would mean for treatment, back then), when nivolumab was more often called ''BMS-936558'', and atezolizumab was 'MPDL3280A', and was starting to be combined with cobimetinib. Being now more than one lymph node involved, so resection is unlikely, and being MSI-high, I dare to say that trial might be a very reasonable option, at least until an anti PD-1/L1 gets approved in Canada.
Achilles Torn wrote: I will only add that my Oncologist explained non approved drugs such as keytruda can be obtained through the BCCA outside of a trial.
Your oncologist essentially presents a case to the provincial board with evidence of clinical benefit. The board reviews and if they agree forward the recommendation to a BCCA VP who approves providing the drug. I'd imagine with all the science behind immunotherapy out there you would have a good chance of it. The key is that your Oncologist has to be willing to make the application and write up the case. If mine wasn't prepared to do that I'd seek a second opinion !
Maia wrote:
Oh, that is great to hear. Definitely, it would be just a matter of they approving the use of anti PD-1/L1 off label, since they are drugs approved, but for other cancers. In Canada, Opdivo --nivolumab, Keytruda --pembrolizumab-- and Tecentriq --atezolizumab-- are all approved in Canada, even if for other cancers.
I think it is only a matter of months or weeks until at least Keytruda gets approved for any MSI-high cancer, in Canada. The evidence is solid.
Stewsbetty wrote:Hey all,
I am going to tell some of my story and gripe and vent a bit. This is hard to do with friends and family sometimes because I don't want to lay a heavier burden on them.
I was diagnosed June 2016 and had a right hemicolectomy. I was staged 3b or 3c (I have 2 different reports one saying 6 of 10 LN positive and 1 saying 10 of 16). I followed prescribed treatments Folfox 12 rounds and kind of expected to hear the "good job and you're done" at the end. I didn't get that - just sent for a PET to check on a LN that they were watching throughout treatment. On Feb 28 it was measuring 13mm. It was cancerous. Oncologist recommended surgery (beginning of May). Didn't get to see surgeon until the end of June. He said to plan for surgery at the end of August (mentioned the slow growing nature of CC). I had a CT mid July and that LN has grown to a mass of 7x7x5cm and there is spread to several more LNs. Today I got a call that there is a fistula between the tumour and the duodenum. No idea what the plan will be going forward from this. My oncologist is presenting my case to the provincial tumour board in 10 days. Meanwhile I am living in limbo again except now I know how quickly this bloody thing is growing. And I don't know what effects this fistula will have.
Pretty much sick of this cancer business! I think as humans we like to think if we follow the rules that things work out. I did the chemo but it didn't do its job! So there's my rant and if any of you have any idea what this fistula might do or any guesses on possible treatment I would love to hear them.
Thanks, Beth
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