Calling ALL Colorectal CANUCKS !

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Steph20021
Posts: 472
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Calling ALL Colorectal CANUCKS !

Postby Steph20021 » Thu Feb 23, 2017 9:04 am

Maia wrote:
Steph20021 wrote: I'm told once I get off folfiri I won't be able to go back on, and it's keeping me stable but for an abdo wall met.


Why would be that? Because the healthcare system won't cover it, as per Canadian guidelines? Because, scientifically, there is no reason. In fact, I see in a FB group for MSS-CRC-clinical-trials-only that people revisit Folfiri often, after being in one, or two, immuno trials, when they need it. Their oncs propose that. And some go back to it after being "failed it" (not just because they stopped to get into a trial).
(Just copying a message from yesterday: "Atezo/cobi did not work for me and with my infection my lungs Ct has got worse. Back on folfiri and looking for another trial.")

And you have trials that *include* Folfiri in the combo (just an example: https://clinicaltrials.gov/ct2/show/NCT02024607. BBI608 is not an immunotherapy but a cancer stem cell inhibitor, a pill.
Also, there are MSS patients that are getting Keytruda or Opdivo from the manufacturer, per recommendation of their oncs. One that I know, it 's getting it in combination with Folfiri (onc recomendation too). But this is in USA.


I'll ask my one this morning why that is, (I should have asked) but Im pretty sure it's related to our healthcare funding. And I agree I would probably be looking for a colon specialized oncologist in Toronto, I'll give it some thought out transferring my care. I liked having Toronto weigh in when I was with them for the period of Hipec, but once I had a post-hipec recurrence they dropped me like a hot potato because I wasn't eligible for another surgery. So now I don't have that extra Toronto Dr and opinion anymore. And I am definitely keeping a list of trials for when chemo starts failing me! Thanks Maia. I think it's incredible the support and info you provide for us all.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
10/14- rev ileo
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
7/15- clear flex sig
8/15-HIPEC, hysterectomy et al, 2nd temp ileo, NED?
09/15- cea 0.9
Current: abdo wall mets and lymph nodes
Jan/17- pulmonary embolism
Feb/17- 1 wk radiation to abdo wall
Current- folfiri 4 life

Steph20021
Posts: 472
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Reminder of program showing tomorrow

Postby Steph20021 » Thu Feb 23, 2017 9:06 am

CRguy wrote:Just bumping this up as a reminder for the upcoming show tomorrow night.
I have set my PVR !
Details in this prior post of mine which now includes an audio podcast with one of the doctors.

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


Thanks for the bump as I missed your earlier posts on this. I'm getting my hair coloured tonight so I'm asking my parents to PVR. (I don't have cable). Hopefully it's available for streaming online afterwards too though! It looks like it's going to be very interesting!
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
10/14- rev ileo
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
7/15- clear flex sig
8/15-HIPEC, hysterectomy et al, 2nd temp ileo, NED?
09/15- cea 0.9
Current: abdo wall mets and lymph nodes
Jan/17- pulmonary embolism
Feb/17- 1 wk radiation to abdo wall
Current- folfiri 4 life

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CRguy
Posts: 9039
Joined: Sun Feb 10, 2008 6:00 pm

Re: Calling ALL Colorectal CANUCKS !

Postby CRguy » Thu Feb 23, 2017 12:35 pm

CBC and Nature of Things specifically will usually offer webcasts of shows from their online library OR thru "On Demand" services, once things have aired.

Just check the CBC website and review their listings there.

Looking forward to seeing this one ... A LOT !

Cheers
CR
Caregiver twice
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing NONrandomized UNcontrolled experiment with N=1 !
Review of my Journey so far
Image

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CRguy
Posts: 9039
Joined: Sun Feb 10, 2008 6:00 pm

Re: Calling ALL Colorectal CANUCKS !

Postby CRguy » Fri Feb 24, 2017 1:47 am

Just watched the show Cracking Cancer ... as in CRACKING the code !

I am blown away by the 40% of info I did not already know about POG .... AND
I was still hugely impressed by the 60% I DID already know !

I have met with some of those Docs ( one was my Onc ),
sat in those exact chemo chairs looking out those windows,
and went thru that same PET scanner and walked those hallways..... many times myself

I always felt they were doing things right, at least as far as my case was concerned.
I had NO idea just HOW RIGHT these folks are going to get it .... moving forward.

They are looking to find new ways to look at personal tumor data / genetic data / treatment correlations ...
which have never been looked at before, in the way they are looking at it !
AND their efforts and "way of looking at things" leads into discoveries and progress in other non cancer related areas
( neurofibromatosis = "Elephant Man disease" )

POG is in its infancy ... it is all really and truly NEW medicine for the 21st century

Can't say enough about it and I personally support the BCCA in all their fundraising events ...
BUTT ... not quite ready for the "Underwear Affair" :shock:
The "Ride to Conquer" would be more my style ... Ok maybe IN my underwear ???? :shock:

yeah I know = not a pretty image :twisted:

CHEERS
HARMONY
MEGA POSI ++++++ VIBES from Canada's left coast

I remain,
the CRguy
Caregiver twice
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing NONrandomized UNcontrolled experiment with N=1 !
Review of my Journey so far
Image

mct
Posts: 35
Joined: Sat Nov 12, 2016 10:08 pm

Re: Calling ALL Colorectal CANUCKS !

Postby mct » Mon Feb 27, 2017 2:15 pm

Hi all
I'm in Ottawa. My resection is scheduled for March 15. I've been offered to participate in the blood thinner trial (Low Molecular Weight Heparin to Improve Cancer Specific Survival following Surgical Resection of CRC). You're given tinzaparin injections prior to hospitalization, during hospitalization and for 56 days post discharge to determine if it will decrease the chance of recurrence. I'm planning to participate but would like to hear feedback from others.

thank you!
Mich
Breast cancer 2009
Rectal cancer Nov 2016, T3N0M0, CEA - 10.3
28 days rads/Xeloda - finished Jan 19 2017
Surgery ULAR Mar 17, 2017
Anastomotic leak, surgery for ileostomy April 4, 2017
May 2017 CEA - 2

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CRguy
Posts: 9039
Joined: Sun Feb 10, 2008 6:00 pm

Re: Calling ALL Colorectal CANUCKS !

Postby CRguy » Mon Feb 27, 2017 4:08 pm

We've had a past topic on this HERE

and I believe this is the study you are referring to http://cscrs.ca/research/clinical-trials-network/

and here is an omnibus paper which references its use https://core.ac.uk/download/pdf/39931239.pdf

Cheers
CRguy
Caregiver twice
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing NONrandomized UNcontrolled experiment with N=1 !
Review of my Journey so far
Image

mct
Posts: 35
Joined: Sat Nov 12, 2016 10:08 pm

Re: Calling ALL Colorectal CANUCKS !

Postby mct » Thu Mar 02, 2017 12:21 am

Thanks for the links CRGuy. Unfortunately I was randomized today into the control group...rats.
Breast cancer 2009
Rectal cancer Nov 2016, T3N0M0, CEA - 10.3
28 days rads/Xeloda - finished Jan 19 2017
Surgery ULAR Mar 17, 2017
Anastomotic leak, surgery for ileostomy April 4, 2017
May 2017 CEA - 2

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CRguy
Posts: 9039
Joined: Sun Feb 10, 2008 6:00 pm

Re: Calling ALL Colorectal CANUCKS !

Postby CRguy » Thu Mar 02, 2017 12:56 pm

Luck of the draw sometimes ... BUTT ... remember that you are STILL an important part of the trial.
Without the control arm, which here is still standard of care, they would not have solid evidence to change things down the line !!

ALSO remember that when some trials show just overwhelming evidence, even before their closing /completion dates ....
they will often shut down the non-treatment "control" arm and just give everyone the treatment !

Cheers and best wishes
CRguy
Caregiver twice
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing NONrandomized UNcontrolled experiment with N=1 !
Review of my Journey so far
Image

Steph20021
Posts: 472
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Calling ALL Colorectal CANUCKS !

Postby Steph20021 » Thu May 11, 2017 11:25 pm

My friend (kras wild type) will likely be trying Tremelimumab with Durvalumab in Toronto under NCT02870920 but he has been told he has to do a targeted therapy first. Folfiri and Folfox have already failed him. I'll post any updates here that he has if and when he finally gets accepted into the trial -hopefully soon. I'm going to read up on Maia's links on the combo now.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
10/14- rev ileo
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
7/15- clear flex sig
8/15-HIPEC, hysterectomy et al, 2nd temp ileo, NED?
09/15- cea 0.9
Current: abdo wall mets and lymph nodes
Jan/17- pulmonary embolism
Feb/17- 1 wk radiation to abdo wall
Current- folfiri 4 life

User avatar
CRguy
Posts: 9039
Joined: Sun Feb 10, 2008 6:00 pm

Nature of Things episode : Cracking Cancer >>> REPLAY TONIGHT

Postby CRguy » Thu Jun 01, 2017 3:45 pm

Just a note that this program will replay tonight at 8 pm
you can check local schedules at the CBC website
http://www.cbc.ca/m/touch/pg-tv.html?vancouver


This is the episode "Cracking Cancer" referred to in these prior posts here

viewtopic.php?f=1&t=32353&start=270#p452003
viewtopic.php?f=1&t=32353&start=285#p452399

Cheers
CR
Caregiver twice
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing NONrandomized UNcontrolled experiment with N=1 !
Review of my Journey so far
Image

Lins
Posts: 3
Joined: Fri Mar 31, 2017 2:10 pm

Re: Calling ALL Colorectal CANUCKS !

Postby Lins » Wed Jun 14, 2017 2:27 pm

Hi Fellow Canadians

My husband is stage 1V with 9 tumors in his liver. He did 6 rounds of Folfox with good results and we have an appointment with the liver specialist at Sunnybrook in Toronto on Monday.

The doctor has already called us and said he is still not a candidate for surgery. I'm wondering about other options........ HAIP/Transplant etc.

Is anyone out this in a similar situation? I just wanted to have all the info when we see the Dr on Monday.

My husband is 43, healthy (other than cancer) and we have 3 children. 7 year old twins and a 9 year old daughter.

Thanks
Lins

Steph20021
Posts: 472
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Calling ALL Colorectal CANUCKS !

Postby Steph20021 » Sat Jun 17, 2017 8:24 am

Lins,
I wish I had some suggestions for you but I don't have liver mets and have no idea. Hopefully someone else can chime in. Sunnybrook is a great hospital, they didn't have any ideas or further referrals for you guys?
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
10/14- rev ileo
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
7/15- clear flex sig
8/15-HIPEC, hysterectomy et al, 2nd temp ileo, NED?
09/15- cea 0.9
Current: abdo wall mets and lymph nodes
Jan/17- pulmonary embolism
Feb/17- 1 wk radiation to abdo wall
Current- folfiri 4 life

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LeonW
Posts: 263
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: Calling ALL Colorectal CANUCKS !

Postby LeonW » Sat Jun 17, 2017 9:56 am

Lins wrote:. . . wondering about other options . . .

Hi Lins,
Have look at this (2012) study: Surgical Options for Initially Unresectable Colorectal LiverMetastases
Leon
Dec 2012 - Dx CC; MM @ 65yrs, 2 unresect liver mets, CEA 41.8
Jan 2013 - colectomy @ spleen (IVa T3N1bM1a) 2/26 nodes, MSI-low
Feb-Aug - 1x Xelox-7x Xelox/Avastin, mets shrink from #3
Sept - 2x failed Portal Vein embolization
Oct 2013 - R liver resect 28 hosp days (liver failure, delirium, emboli, encephalopathy) Pathology: no cancer cells pCR (ypT0N0M0)
2014/15 - recovery; benign polyp Apr '15
Apr 2016 new house/town/life
clean CTs and 1.3/1.4 CEAs: 4x2014, 4x2015/16, May2017; next Nov 2017

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Maia
Posts: 2334
Joined: Fri Aug 24, 2012 8:00 am

Re: Calling ALL Colorectal CANUCKS !

Postby Maia » Mon Jun 19, 2017 2:00 pm

An update on a trial with several Canadian locations.
It was a double combo, now it is a triplet of immunotherapies:

An update on protocol for trial NCT02658890. It used to be anti PD-1 (Nivolumab, Opdivo) + IDO1 inhibitor (BMS-986205). Now Ipilimumab (Yervoy, anti anti-CTLA- 4) has been added. https://clinicaltrials.gov/ct2/show/NCT02658890

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Maia
Posts: 2334
Joined: Fri Aug 24, 2012 8:00 am

Re: Calling ALL Colorectal CANUCKS !

Postby Maia » Mon Jun 19, 2017 2:03 pm

Lins wrote:My husband is stage 1V with 9 tumors in his liver. He did 6 rounds of Folfox with good results and we have an appointment with the liver specialist at Sunnybrook in Toronto on Monday.

Lins, you wouldn't be in a better place than Sunnybrook, if dealing with liver mets, because they have there the HAI pump. So, if your husband is a candidate, they will try it : )
You can search in previous pages of this long thread for information about the HAI pump in Canada.


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