Does immunotherapy offer a cure?

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Stewsbetty
Posts: 170
Joined: Thu Jul 14, 2016 7:08 am

Does immunotherapy offer a cure?

Postby Stewsbetty » Mon Jul 17, 2017 11:01 am

I am curious whether immunotherapy offers a cure or if it is a long term treatment. I am msi-h and am looking into immunotherapy for recent growth spread in lymph nodes near the pancreas. I live in Canada and a fair distance from any centres running immunotherapy trials. I would be willing to travel for a while but I can envision doing that the rest of my life. I know every person responds differently and that immunotherapy isn't even guaranteed to work on msi-h but I am curious if it does work is it an on going treatment or is there an end site. I don't see my oncologist for another week (perks of rural living - dr is only here once a month for a week:) so I am just looking into things to talk about with her.

Beth
42yo At diagnosis. Female in BC, Canada
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
10 out of 16 lymph involved
MSI-h, Kras mut, Braf wild
Finished chemo Feb. 2017
PET scan showing active area April 2017
July 2017 CT showing LN mass and spread to other LN
Stage 4
Aug 2017 failed Fofiri
Sept 2017 keytruda scans every 3 months showing shrinkage and stability
November 2018 CT shows only 1 small tumour left
September 2019 clear CT finally NED!!!

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Does immunotherapy offer a cure?

Postby Lee » Mon Jul 17, 2017 1:05 pm

Don't know if you've been following Celine's journey, butt at one time she was given months to live, today she is NED. Her thread is helping other people get to the trial that saved her life.

Here it is, a bit long, butt worth reading.

viewtopic.php?f=1&t=49736

Hope this helps,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

ACPdiddy
Posts: 28
Joined: Wed Apr 12, 2017 4:01 pm
Facebook Username: Albert Pierce

Re: Does immunotherapy offer a cure?

Postby ACPdiddy » Mon Jul 17, 2017 4:02 pm

If you're MSI-high, you don't need to be in a clinical trial to get immunotherapy. At least in the states, Keytruda is already approved for MSI-high CRC (and all MSI-high cancers). If you can't get it in Canada, any cancer hospital in the states should be able to give it to you. The only hurdle is you need to have failed other treatment already. Keytruda isn't approved as a first line treatment.

Stewsbetty
Posts: 170
Joined: Thu Jul 14, 2016 7:08 am

Re: Does immunotherapy offer a cure?

Postby Stewsbetty » Tue Jul 18, 2017 1:12 am

Lee wrote:Don't know if you've been following Celine's journey, butt at one time she was given months to live, today she is NED. Her thread is helping other people get to the trial that saved her life.

Here it is, a bit long, butt worth reading.

viewtopic.php?f=1&t=49736

Hope this helps,

Lee



Thanks, Lee. Yes, I have been following Celine's story through that lengthy thread. I guess I was wondering more about KEytruda or Opdivo since those are therapies that might be available to me through trials in Canada. There is a trial for immunotherapy in a neighbouring province that looks interesting. But I don't know if it is doable for the rest of my life. Sometimes it is easier to make decisions for a specific period. I can see traveling for 16 hours every 2 weeks if there is an end date. Indefinitely is a little harder to think about. :)
42yo At diagnosis. Female in BC, Canada
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
10 out of 16 lymph involved
MSI-h, Kras mut, Braf wild
Finished chemo Feb. 2017
PET scan showing active area April 2017
July 2017 CT showing LN mass and spread to other LN
Stage 4
Aug 2017 failed Fofiri
Sept 2017 keytruda scans every 3 months showing shrinkage and stability
November 2018 CT shows only 1 small tumour left
September 2019 clear CT finally NED!!!

Stewsbetty
Posts: 170
Joined: Thu Jul 14, 2016 7:08 am

Re: Does immunotherapy offer a cure?

Postby Stewsbetty » Tue Jul 18, 2017 1:18 am

ACPdiddy wrote:If you're MSI-high, you don't need to be in a clinical trial to get immunotherapy. At least in the states, Keytruda is already approved for MSI-high CRC (and all MSI-high cancers). If you can't get it in Canada, any cancer hospital in the states should be able to give it to you. The only hurdle is you need to have failed other treatment already. Keytruda isn't approved as a first line treatment.


Unfortunately Keytruda isn't approved in Canada yet. :( Part of the reason for this post is to learn more about immunotherapy. I looked up the cost of Keytruda and it looks like it is around 150,000 a year. So I am wondering if it works, would that be after a set amount of rounds. I definitely couldn't afford 150,000 a year for very long. ;) I think I count as having failed Folfox since a distant lymph node didn't respond to treatment and it appears I now have several that are enlarged. I am trying to gather information to go over with the surgeon and the oncologist that I will be speaking with next week.
42yo At diagnosis. Female in BC, Canada
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
10 out of 16 lymph involved
MSI-h, Kras mut, Braf wild
Finished chemo Feb. 2017
PET scan showing active area April 2017
July 2017 CT showing LN mass and spread to other LN
Stage 4
Aug 2017 failed Fofiri
Sept 2017 keytruda scans every 3 months showing shrinkage and stability
November 2018 CT shows only 1 small tumour left
September 2019 clear CT finally NED!!!

User avatar
CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: Does immunotherapy offer a cure?

Postby CRguy » Tue Jul 18, 2017 1:48 am

Any chance your tumour has been / could be assessed by the POG program at BCCA ?
this post of mine should give the starting points to follow up on this ????

Dr. Janessa Laskin and Dr. Marco Marra at BCCA Vancouver are the primary contacts

viewtopic.php?f=1&t=32353&start=270#p452003

AND Maia's post immediately following mine gets you into the clinical trial finder !!!!
linked the first page of results for you here
http://trialfinder.fightcrc.org/trials/ ... erapyName=

of which, one entry using Keytruda is : https://clinicaltrials.gov/ct2/show/NCT02298959
Canada, British Columbia
BCCA-Vancouver Cancer Centre Recruiting
Vancouver, British Columbia, Canada, V5Z 4E6
Contact: Daniel J. Renouf 604-877-6000 clinical.trials@uhn.on.ca...
Principal Investigator: Daniel J. Renouf


Cheers
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Stewsbetty
Posts: 170
Joined: Thu Jul 14, 2016 7:08 am

Re: Does immunotherapy offer a cure?

Postby Stewsbetty » Tue Jul 18, 2017 4:49 pm

CRguy wrote:Any chance your tumour has been / could be assessed by the POG program at BCCA ?
this post of mine should give the starting points to follow up on this ????

Dr. Janessa Laskin and Dr. Marco Marra at BCCA Vancouver are the primary contacts

https://coloncancersupport.colonclub.co ... 70#p452003

AND Maia's post immediately following mine gets you into the clinical trial finder !!!!
linked the first page of results for you here
http://trialfinder.fightcrc.org/trials/ ... erapyName=

of which, one entry using Keytruda is : https://clinicaltrials.gov/ct2/show/NCT02298959
Canada, British Columbia
BCCA-Vancouver Cancer Centre Recruiting
Vancouver, British Columbia, Canada, V5Z 4E6
Contact: Daniel J. Renouf 604-877-6000 clinical.trials@uhn.on.ca....
Principal Investigator: Daniel J. Renouf


Cheers
CRguy


Thanks, CRguy. I am going to ask about the POG thing at my next appointment with the oncologist. I am getting quite the list of things to review with her. :) This is the trial that I thought looked the most promising in terms of immunotherapy and relative closeness. https://clinicaltrials.gov/ct2/show/NCT02060188 There were a bunch more in Ontario and Quebec but if there is no end point it seems overwhelming to think of moving or being away from home. Nothing from Vancouver stood out to me but Edmonton and Vancouver are about the same distance away from me. And I have family in Edmonton that could be a support to me. But as I said before I have no idea what the drs are going to say to me. Still waiting to hear back from the surgeon in Vancouver and my oncologist (also Vancouver based) isn't coming up to Prince George until next week. I am thankful that my town isn't under evacuation order from wildfire but travel at this time is pretty crazy.

Beth
42yo At diagnosis. Female in BC, Canada
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
10 out of 16 lymph involved
MSI-h, Kras mut, Braf wild
Finished chemo Feb. 2017
PET scan showing active area April 2017
July 2017 CT showing LN mass and spread to other LN
Stage 4
Aug 2017 failed Fofiri
Sept 2017 keytruda scans every 3 months showing shrinkage and stability
November 2018 CT shows only 1 small tumour left
September 2019 clear CT finally NED!!!

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Does immunotherapy offer a cure?

Postby Lee » Tue Jul 18, 2017 6:17 pm

Stewsbetty wrote:[ . . . Unfortunately Keytruda isn't approved in Canada yet. :( Part of the reason for this post is to learn more about immunotherapy. . . .


Gee sure hope you can get on board on Keytruda. Not sure if you've been following BeansMama journey. All traditional chemos have failed her. Thanks to Keytruda, she has gone from *not* a candidate for surgery to now she has a surgery date with intend of a "cure".

Good luck, hope you can get on board with one of those trials.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

User avatar
CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: Does immunotherapy offer a cure?

Postby CRguy » Tue Jul 18, 2017 9:06 pm

Stewsbetty wrote: But as I said before I have no idea what the drs are going to say to me. Still waiting to hear back from the surgeon in Vancouver and my oncologist (also Vancouver based) isn't coming up to Prince George until next week. I am thankful that my town isn't under evacuation order from wildfire but travel at this time is pretty crazy.
Beth

Province on FIRE ! ....again !!!!! :twisted:

Have you checked out Kelowna ?????
They do have a good BCCA site there, so that may be closer still ????
A lot of the heavy duty research etc. is out of BCCA Vancouver/UBC .... BUTT all the centers have their own strengths and are all linked.
If your Oncs are coming from Vancouver, is there an option for you to be transferred to Kelowna BCCA ???????
My Dad's Onc (Kelowna) was PMH trained as a thoracic specialist and I see your link also shows PMH as a recruiting site
so there may be a contact in Kelowna as well ??????????

Sorry have no info or experiences with the Edmonton site

Canada, Alberta
Cross Cancer Institute Recruiting
Edmonton, Alberta, Canada, T6G 1Z2
Contact: Michael Sawyer, Site 0027

Canada, Ontario
Princess Margaret Hospital Recruiting
Toronto, Ontario, Canada, M5G 1X5
Contact: Albiruni Razak, Site 0016 4169464501
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far


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