Calling ALL Colorectal CANUCKS !

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Steph20021
Posts: 492
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Calling ALL Colorectal CANUCKS !

Postby Steph20021 » Wed Jul 20, 2016 4:38 pm

I came across this phase 2 trial for MSS patients which pmh is not yet recruiting for in case anyone is interested. I've seen durvalumab mentioned in this forum before. Is this a kind of immunotherapy?

Study of Azacitidine and Durvalumab in Advanced Solid Tumors (METADUR)

This is a phase 2 study of investigational drug, durvalumab given in combination with azacitidine (CC-486). The main purpose of this phase 2 study is to assess the antitumor activity of azacitidine in combination with durvalumab patients with microsatellite stable colorectal carcinoma (MSS-CRC), platinum resistant epithelial ovarian cancer type II (PR-OC), and estrogen receptor positive and HER2 negative breast cancer.

https://clinicaltrials.gov/ct2/show/stu ... 0#contacts
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
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
8/15-HIPEC, hysterectomy et al, 2nd temp ileo, NED?
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
Jan/17- pulmonary embolism
Feb/17- 1 wk radiation to abdo wall
Currently stable suce Aug/16- on folfiri

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CRguy
Posts: 9230
Joined: Sun Feb 10, 2008 6:00 pm

Re: Calling ALL Colorectal CANUCKS !

Postby CRguy » Wed Jul 20, 2016 6:13 pm

Steph20021 wrote: Is this a kind of immunotherapy?

Thanx for this "find" :mrgreen: and Yes, it is a human derived monoclonal antibody which targets programmed death ligand-1 (PD-L1).
the highlighted letters from its name = durvalumab

yes I am a minor geek for some of this stuff :oops:

Cheers
CR
Caregiver x 3
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

Steph20021
Posts: 492
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Calling ALL Colorectal CANUCKS !

Postby Steph20021 » Wed Jul 20, 2016 6:23 pm

CRguy wrote:
Steph20021 wrote: Is this a kind of immunotherapy?

Thanx for this "find" :mrgreen: and Yes, it is a human derived monoclonal antibody which targets programmed death ligand-1 (PD-L1).
the highlighted letters from its name = durvalumab

yes I am a minor geek for some of this stuff :oops:

Cheers
CR

Hahah that's so awesome you know that! We love geeks around here!
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
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
8/15-HIPEC, hysterectomy et al, 2nd temp ileo, NED?
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
Jan/17- pulmonary embolism
Feb/17- 1 wk radiation to abdo wall
Currently stable suce Aug/16- on folfiri

User avatar
CRguy
Posts: 9230
Joined: Sun Feb 10, 2008 6:00 pm

BCCA POG program updated

Postby CRguy » Sat Sep 03, 2016 6:02 pm

I have just found THE published article which illustrates the success of the BCCA POG program
following the announcement of the POG program clinical trial info earlier in this topic.

An overview of the POG program development is cited HERE
and the actual case report which made international headlines is found HERE

Both articles are free access and worth reading as I feel this POG integrative approach has the potential to change the game for cancer, not just CRC.
The case report is about a recurrent, metastatic CRC patient who did not tolerate traditional chemo well.
She was given an ARB ( angiotensin receptor blocker .. normally used for blood pressure issues ! )
which happens to be known for affecting a particular pathway her tumours expressed .... hence the PERSONALIZED part !
ARBs should NOT be considered chemo for ALL ....
BUTT with the POG whole genome analysis and integrating other investigative techniques and known drug action databases .....
She has been "cured" ......

We need more of this personalized approach and all the immunotherapy and oncogenomics investigations for any, every and ALL cancers ...
will give us information which will ultimately benefit us all
... AND I am very happy to state that one of the lead Oncologists on this ... is my Onc ..... :mrgreen:

WORD !

Love Peace and Harmony
to all on the Journey
CRguy
Caregiver x 3
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

Utwo
Posts: 131
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Portaging a canoe?

Postby Utwo » Sat Sep 10, 2016 9:15 pm

How much time should pass since laparascopic surgery before I can carry a canoe?

My wife is telling me that I need to wait at least a year.
I tried paddling over a Labor day without any portage and was underwhelmed by this experience.
It felt like a zoo.
I feel that real canoeing with solitude and tranquility starts after the first portage.
58 yo male at diagnosis - T1bN0, 0/15 lymph nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy #1: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy #2: caecum sessile 3.5 cm polyp piecemeal removed
05/2016 CT scan, blood test ...
05/2016 laparoscopic right hemicolectomy with a few complications (bleeding, leak, infection)
06/2017 CT scan, colonoscopy OK; CEA = 1.6

Canada777
Posts: 35
Joined: Mon Mar 28, 2016 6:24 pm

Re: Calling ALL Colorectal CANUCKS !

Postby Canada777 » Thu Sep 15, 2016 9:04 pm

Wanted to let all the Canadians know it is sometimes possible to get coverage for surgery in the US. BF got declined for HIPEC in Toronto. Toronto is the only HIPEC center in Ontario. We sought a second oppion in Buffalo. Buffalo felt he was a candidate for surgery. Our oncologist filled out the "out of canada coverage" request form for us along with some supporting documentation. We found out recently that he was approved by OHIP! They will fund his surgery in Buffalo :)
BF dx. Stage 4 Colon cancer with Peri mets Dec '15 @ age 29
12 Rounds FOLFOX Jan-June 2016
4 month chemo break. Still only Peri mets.
Successful HIPEC Oct. 2016. Diagnosis changed to appendix cancer.
Recurrence to pelvis. FOLFIRI starting Sept 2017.

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CRguy
Posts: 9230
Joined: Sun Feb 10, 2008 6:00 pm

Re: Portaging a canoe?

Postby CRguy » Fri Sep 16, 2016 10:55 am

Utwo wrote:How much time should pass since laparascopic surgery before I can carry a canoe?

I healed for 3 months before any lifting and rehabbed 6 months before any heavy lifting / activity.
Maybe check with your docs as I had the full open LAR as opposed to lap.

Canada777 wrote:Wanted to let all the Canadians know it is sometimes possible to get coverage for surgery in the US.


Excellent feedback for this topic Canada777. It doesn't come up a lot but there have been very few posts about being successful !

Cheers to you both
CRguy
Caregiver x 3
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

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CRguy
Posts: 9230
Joined: Sun Feb 10, 2008 6:00 pm

Happy Thanksgiving weekend Canucks !

Postby CRguy » Mon Oct 10, 2016 11:33 pm

Having been derelict in my duties as resident Canuck Mod here
I NOW officially wish all my fellow Great White Northers
a Happy Thanksgiving Day ..... north of 49
and, more importantly

I am wishing that you ALL have something wonderful, healing and substantive
to BE thankful for in your lives

In Harmony
ALWAYS,
On the Journey

CRguy
ColoRectal Canuck
Caregiver x 3
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

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ABMom
Posts: 54
Joined: Sat Sep 10, 2016 6:04 pm
Location: Calgaryish

Re: Calling ALL Colorectal CANUCKS !

Postby ABMom » Tue Oct 11, 2016 12:50 am

I'm stuffed like a turkey! A great weekend to be thankful for what I have. Happy Thanksgiving everyone!!! :D
39 Stage 1 RC
T2N0Mx - 2016-10-07
LAR - 2016-11-01
Illeo-reversal - 2017-01-27

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Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: Calling ALL Colorectal CANUCKS !

Postby Nik Colon » Tue Oct 11, 2016 5:54 pm

Happy Thanksgiving to you all! I learned something new about Thanksgiving in Canada :)

The US Thanksgiving is the last Thursday in November.
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

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CRguy
Posts: 9230
Joined: Sun Feb 10, 2008 6:00 pm

Re: Calling ALL Colorectal CANUCKS !

Postby CRguy » Mon Jan 16, 2017 8:30 pm

Some New Links for info about Clinical Trails in Canada and around the globe !

I have checked all these links which were published in the Jan/Feb 2017 issue of Good Times magazine
( Volume 28 No. 1..... http://goodtimes.ca/ )

http://cancertrials.ca/
https://clinicaltrials.gov/
https://health-products.canada.ca/ctdb- ... ex-eng.jsp
http://www.isrctn.com/
http://apps.who.int/trialsearch/
http://itstartswithme.ca/

http://blogs.bmj.com/bmj/2016/10/21/ric ... cal-trial/
Richard Smith: What should a patient ask before entering a clinical trial?

http://www.alltrials.net/find-out-more/all-trials/
AllTrials calls for all past and present clinical trials to be registered and their full methods and summary results reported.

https://app.betterimpact.com/PublicOrga ... e28ba518/1
patient feedback registration for Albertans

some are informational, some are patient advocacy based ... YOU be the judge BUTT it is all good info for us to have on hand
and none of these will replace the great work done by our very OWN Maia and DK37 right here on ColonTalk !

Cheers and Harmony fellow Canucks
CRguy
Caregiver x 3
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

NeVadasMitis
Posts: 14
Joined: Thu Feb 02, 2017 3:34 pm

Re: Calling ALL Colorectal CANUCKS !

Postby NeVadasMitis » Thu Feb 02, 2017 7:53 pm

Hi all, newbie Canuck here,
My 61 year old dad was recently dx-ed with a liver met, after having had stage 1 CRC in 2012, followed by almost 4 years of clean scans (talk about crap luck, eh?).

I don't think there's a scarier word in the English language than "cancer"...unless perhaps "metastatic"! It's been a rough 2 months for us all of trying to get over the shock and prepare for what's next. During that time, I've been lurking and reading, reading, reading on the forum. It's been so helpful to see so many stage IV-ers with positive stories, and to realize that there's hope!

I have a question for my fellow Canucks. At this point in our journey, everything seems to be going as well as can be expected as far as the medical process is concerned. Tests and surgery are taking much longer than we'd like, but I guess that's partly anxiety and partly the reality of healthcare in Canada (which I am, nevertheless, very grateful for).

As I read through the forum, I can't help but wonder what would be involved, and especially, how much it would COST, if things ever DID get to the point where dad wanted to consider getting a second-opinion/consult at a major American cancer centre (like MSK, for eg). I read somewhere that a second opinion at one of these places can cost as much as 40k (!!!) but other sources seem to suggest that's an extreme example.

So my question is: have any of you gone to one of these centres? If so, and if you don't mind sharing, what did you go for/ request, and what did it cost? Do you feel it was worth it? And how did it affect treatment and your rapport with your home oncologist?
Thank you! Sarah
DD to dad in Ontario, Canada, dx Dec.2012, age 57, Stage I CRC
2013/01 complicated resection (due to location of cancer barely beyond rectum in sigmoid)
2016 summer/fall CEA slowing rising...(2.1, 2.8, 3.1)
2016/12 scan shows "something" on RL of liver; fna biopsy ordered
2017/01 confirmed 1 met to liver (1.5x2 cm); Stage IVa; cea 3.1
2017/02 5mm node on lung - Too small to biopsy!
2017/03 liver resection; all seems good - waiting on pathology report
2017/04 chemo?

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CRguy
Posts: 9230
Joined: Sun Feb 10, 2008 6:00 pm

Re: Calling ALL Colorectal CANUCKS !

Postby CRguy » Thu Feb 02, 2017 9:04 pm

Hey Sarah
Glad you could join us .... Sorry you HAD to :(

A few trans border "shoppers" are on forum and hopefully they will weigh in.
IF you get no replies into this topic then I suggest we move your discussion to its own topic where you may get more attention.

FWIW .... I have not done this ( all my Tx was @ BCCA Vancouver) ..... it does seem to depend a lot on how wired in your local Onc is,
to Provincial regulations etc.
AND how well experienced / connected they may be to any given USA referral centre and whether or not there is a "suitable, similar / equivalent" treatment option available north of 49.

If any doctor choked at offering a patient a better treatment option or even a second opinion ..... I would personally find a new doctor ... and in fact have done so a couple of times...... MY LIFE = MY CHOICE.

OH BTW ... you Ontarians can have your winter weather back :mrgreen:

Cheers and best wishes
CRguy on the Journey with you
Caregiver x 3
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

Canada777
Posts: 35
Joined: Mon Mar 28, 2016 6:24 pm

Re: Calling ALL Colorectal CANUCKS !

Postby Canada777 » Thu Feb 02, 2017 9:44 pm

Hi Sarah - from Ontario as well and we went to Buffalo - Roswell Park - for a second opinion. We were told upfront the consultation would be around $1500 US. I'm sure if you call and ask they can give you a rough estimate over the phone.
BF dx. Stage 4 Colon cancer with Peri mets Dec '15 @ age 29
12 Rounds FOLFOX Jan-June 2016
4 month chemo break. Still only Peri mets.
Successful HIPEC Oct. 2016. Diagnosis changed to appendix cancer.
Recurrence to pelvis. FOLFIRI starting Sept 2017.

NeVadasMitis
Posts: 14
Joined: Thu Feb 02, 2017 3:34 pm

Re: Calling ALL Colorectal CANUCKS !

Postby NeVadasMitis » Fri Feb 03, 2017 1:28 pm

CRguy, I totally hear what you're saying about getting a new doctor in that situation, and I definitely would. I guess I was just wondering if, in people's experience, doctors "tend to" take it personally if someone goes for a second opinion, but I guess at the end of the day it would depend on the doctor's personality. Also, on a more practical level, what happens if the second opinion doctor suggests a different approach than the primary doctor? Does the patient then have to change doctors to pursue treatment?

Thanks for your input, Canada777. $1500 is definitely more reasonable. Hopefully, things will go well enough that we won't have to pursue second opinions, but it's good to know that options exist if necessary!
DD to dad in Ontario, Canada, dx Dec.2012, age 57, Stage I CRC
2013/01 complicated resection (due to location of cancer barely beyond rectum in sigmoid)
2016 summer/fall CEA slowing rising...(2.1, 2.8, 3.1)
2016/12 scan shows "something" on RL of liver; fna biopsy ordered
2017/01 confirmed 1 met to liver (1.5x2 cm); Stage IVa; cea 3.1
2017/02 5mm node on lung - Too small to biopsy!
2017/03 liver resection; all seems good - waiting on pathology report
2017/04 chemo?


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