Calling ALL Colorectal CANUCKS !

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nicola smith
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Joined: Thu Oct 07, 2010 9:06 am

Re: Calling ALL Colorectal CANUCKS !

Postby nicola smith » Tue Jan 08, 2013 1:11 pm

Actually, your experience mirrors ALL the misgivings I am having about the 'wellness program' including the imminent retirement of my GP. I don't think there are too many doctors out there who want to accept a new patient with a cancer history. And I sure as heck don't want to be relegated to using a walk-in clinic, which seems likely.

I have experienced enough problems with continuity of care 'in the system' to be very wary of what will happen outside it. The most recent example was when I asked what the plans were to remove my port...they didn't even know I still had it! They also thought my respirologist was my GP, even though the respirologist and the onc are in the same hospital!

So, like you, I am going to push to remain under the oncologist's care. I have some negative prognosis factors that I will use as leverage when they try to boot me out

Let me know how it works for you.

p.s. if you look at the link to the wellness program, it describes 3 possible outcomes of the program: referral back to GP, referral back to GP + nurse practitioner, referral back to GP +oncologist. The oral briefing I received on the program did not mention the oncologist option and I do not think this was an oversight. The person who briefed me also said something to the effect that "people like you are in danger of being over-monitored"...WTF :shock:
UC history
11/09: Dx, CEA 2.9
02/10: colectomy, temp ileo; pT3N1Mx
10/10: 12 Folfox6
03/11: jpouch
2010/11/12/13/14: 6 PET and/or CT's - NED
quarterly 03/2010- 03/2015: CEA range 0.8-1.3
03/2015: discharged to GP :D

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CRguy
Posts: 10474
Joined: Sun Feb 10, 2008 6:00 pm

Re: Calling ALL Colorectal CANUCKS !

Postby CRguy » Tue Jan 08, 2013 4:01 pm

nicola smith wrote:..... The person who briefed me also said something to the effect that "people like you are in danger of being over-monitored"...WTF :shock:

Ask if that is in contradistinction to being Under-Diagnosed ??? What a butt head !

I say play the cancer cards you were dealt and keep pushing them on it.
"You will miss more for not looking, than not knowing." Ask them what they think they will find if they don't even look ?

We'll be in touch, for sure, as the year progresses.
Cheers and best wishes
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

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Erbitux For Colorectal Cancer Gets Approval In Canada

Postby Maia » Mon Jan 14, 2013 2:14 pm


Erbitux For Colorectal Cancer Gets Approval In Canada


1/14/2013 9:33 AM ET

"Bristol-Myers Squibb Co. (BMY: Quote) announced that health Canada has approved Erbitux (cetuximab) as an initial treatment option for Canadians with metastatic colorectal cancer whose tumours have a non-mutated KRAS gene.

Erbitux is a biomarker-directed therapy that was initially approved in Canada in 2008 for the treatment of epidermal growth factor receptor-expressing metastatic colorectal cancer for patients whose disease progressed after chemotherapy.

According to the company, the new approval allows Erbitux for use as an initial therapy in combination with the chemotherapy regimen FOLFIRI for patients with non-mutated KRAS, epidermal growth factor receptor-expressing metastatic colorectal cancer.

The approval is based on data from CRYSTAL trial, a European Phase 3 open-label, randomized, multicentre study with progression-free survival as the primary endpoint comparing patients treated with Erbitux plus FOLFIRI versus FOLFIRI alone.

Bristol-Myers Squibb Canada will work with health authorities to ensure that patients in Canada with metastatic colorectal cancer who may benefit from Erbitux will have access to it. "

http://www.rttnews.com/2036850/bristol- ... x?type=bio

So... wasn't approved until now? :shock:
Maybe it went under my radar because my friend is KRAS mutant.

smokeyjoe
Posts: 137
Joined: Wed Sep 21, 2011 8:40 am

Re: Calling ALL Colorectal CANUCKS !

Postby smokeyjoe » Mon Jan 14, 2013 3:31 pm

Thanks for posting this....I was recently wondering if this drug was available in Canada, and if it was covered in Ontario.

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CRguy
Posts: 10474
Joined: Sun Feb 10, 2008 6:00 pm

Re: Erbitux For Colorectal Cancer Gets Approval In Canada

Postby CRguy » Mon Jan 14, 2013 5:45 pm

Maia wrote:So... wasn't approved until now?

Actually the BCCA has used it since at least 2009 with irinotecan protocols in the metastatic setting for CRC, so the headline is misleading with respect to "approval." It has been approved and available in Canada for a while. This newsbite seems to just update / amend its firstline use status with respect to CRC metastatic setting.
Also remember that Health Canada is not necessarily the ultimate authority for specific protocol uses, administered under the jurisdiction of provincial health authorities. While it is blessed by HC, individual authorities are still free to use it or not in that setting, and there can be considerable variation between provinces.

(( as an aside, the FDA approval appears to have been announced, in a similar setting, in July of 2012. ))

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

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Calling ALL Colorectal CANUCKS !

Postby Maia » Mon Jan 14, 2013 5:52 pm

Thank you for the clarification because, yes, that was my impression --that it was being used in Canada. Glad is also available as first line now, for those who can be helped by it :)

nicola smith
Posts: 1040
Joined: Thu Oct 07, 2010 9:06 am

Re: Calling ALL Colorectal CANUCKS !

Postby nicola smith » Thu Jan 17, 2013 5:53 pm

Just wondering if any of you Canucks are participating in this clinical trial and how you are doing. I am and, so far, so good. Fingers crossed

http://clinicaltrials.gov/show/NCT01455831

"The human body has a natural stress response to surgery, including the formation of blood clots. This response to surgery has been shown to increase metastases (the spread of cancer cells to other organs in the body). These metastases cannot be seen at the time of surgery but when they grow into new tumors, the cancer has recurred (come back). A blood thinner called "low molecular weight heparin" (LMWH) can suppress the development of metastases after surgery in animal experiments. The investigators want to see if giving patients with colon cancer the blood thinner, LMWH, around the time of surgery can decrease the chance of their cancer spreading to other organs (metastases) and coming back (recurrence).

The investigators need 1075 patients to answer our scientific question. Patients who give informed consent will be randomly put into one of two groups, the experimental group and the control group. The patients in the control group will be treated with LMWH starting a few hours after surgery and every day until they leave the hospital. This is how most patients are treated after colon cancer surgery (standard care). The patients in the experimental group will be treated with LMWH for a longer period of time, starting on the day they agree to have surgery and continuing for two months after surgery. All the patients will be followed for at least three years after surgery to find out if their cancer has recurred (come back). If LMWH treatment around the time of surgery reduces the chance of recurrence in patients with colon cancer, it would improve the health and quality of life for these patients."
UC history
11/09: Dx, CEA 2.9
02/10: colectomy, temp ileo; pT3N1Mx
10/10: 12 Folfox6
03/11: jpouch
2010/11/12/13/14: 6 PET and/or CT's - NED
quarterly 03/2010- 03/2015: CEA range 0.8-1.3
03/2015: discharged to GP :D

smokeyjoe
Posts: 137
Joined: Wed Sep 21, 2011 8:40 am

Re: Calling ALL Colorectal CANUCKS !

Postby smokeyjoe » Thu Jan 17, 2013 6:26 pm

I've been on Lovenox now for over two years, since prior to surgery......blood clots were my first "symptom". :oops:

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Regorafenib approved in Canada

Postby Maia » Mon Mar 25, 2013 7:26 am

TORONTO, March 25, 2013 /CNW/ - Bayer Inc. announced today the Health Canada approval of Stivarga (regorafenib tablets), indicated for the treatment of patients with metastatic colorectal cancer (mCRC) who have been previously treated with fluoropyrimidine-based chemotherapy, oxaliplatin, irinotecan, an anti-VEGF therapy, and, if KRAS wild type, an anti-EGFR therapy.

http://www.newswire.ca/en/story/1135017 ... tatic-colo

Cb75
Posts: 1216
Joined: Sun Apr 22, 2012 3:52 pm
Location: Ontario, Canada

Re: Calling ALL Colorectal CANUCKS !

Postby Cb75 » Thu May 16, 2013 5:24 pm

Is there anyone here from Canada who has been involved with a clinical trial out of country? I am currently looking into my eligibility to participate in a clinical trial cross boarder. I'm told that the estimated cost will be 14,000. I think I can handle the payment, but am curious if you were ale to get your provincial or personal health insurance to cover some of the cost. Thanks.

Carm
39y female Stage IV
diagnosed April 2012
sigmoid resect May 2012
liver resect Aug 2012
Folfox Oct 2012
lungs Sep 2013
R and L laser lung resection Nov 2013/Feb 2014
FOLFIRI and Avastin Apr 2014 ongoing...

faith1

Re: Calling ALL Colorectal CANUCKS !

Postby faith1 » Fri Jun 21, 2013 12:31 pm

i was on xeloda for several months.my union covered 80% thankfully but the also the company that makes xeloda will help with the costs..speak to the pharmacist
about their program.

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CRguy
Posts: 10474
Joined: Sun Feb 10, 2008 6:00 pm

Re: Calling ALL Colorectal CANUCKS !

Postby CRguy » Sun Jun 23, 2013 11:26 pm

Cb75 wrote:Is there anyone here from Canada who has been involved with a clinical trial out of country?
Carm

I believe there was someone a while ago who investigated it and another who gave some info on how to "work" things through the system. Sorry don't have references. I PM'd one person but never got a reply and the other did not eventually follow up.

The bottom line I gathered from both folks was getting on board with a co-operative, knowledgeable and pro-active Onc who was wired into the "system" with contacts on both sides of the border. Once your local cancer agency, under your provincial health system is working with you, things get easier. Often it has to do with seeking something which is not being provided locally / provincially..... but something which your Oncs feel is of benefit to you. IME the cancer centre Onc needs to push to get any approvals and funding from provincial health systems. Private health care plans are all over the map with what they provide or reject, but basically follow the provincial guidelines and cancer agencies as to what is "acceptable."

Many clinical trials do recruit internationally, so there is often a Canadian location involved with a trial based out of country. The major cancer centres in Canada are all online, and know who is recruiting, and for what.

Another option is to contact your MLA or MP to get some political push behind this ?????

Best wishes and let us know how things are going.
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

smokeyjoe
Posts: 137
Joined: Wed Sep 21, 2011 8:40 am

Re: Calling ALL Colorectal CANUCKS !

Postby smokeyjoe » Mon Jun 24, 2013 8:43 am

Interesting. What clinical trial are you looking at and where?? I'm in Ontario too. I get disconnect at home ... the last meeting I had with homecare the lady mentioned that she really liked my oncologist that he's sent patients across the border for treatment .... she said he does that if he sees there is something that he feels would benefit you ......she didn't give me any specifics though as to where ..... I think she mentioned Buffalo.

smokeyjoe
Posts: 137
Joined: Wed Sep 21, 2011 8:40 am

Re: Calling ALL Colorectal CANUCKS !

Postby smokeyjoe » Mon Jun 24, 2013 8:46 am

Is Zaltrap ever used in Canada????

Cb75
Posts: 1216
Joined: Sun Apr 22, 2012 3:52 pm
Location: Ontario, Canada

Re: Calling ALL Colorectal CANUCKS !

Postby Cb75 » Mon Jun 24, 2013 8:50 pm

I'm looking into a dc vaccine trial at the Roswell cancer center in buffalo. I have passed the initial screening, the next is the testing of my tumor to see if it qualifies. I haven't heard from Roswell for a few weeks. It seemed to be moving along but has now come to a standstill. I will try to follow up up this week. I will also take cr guy's advice and see if my oncologist can help out.

Carm
39y female Stage IV
diagnosed April 2012
sigmoid resect May 2012
liver resect Aug 2012
Folfox Oct 2012
lungs Sep 2013
R and L laser lung resection Nov 2013/Feb 2014
FOLFIRI and Avastin Apr 2014 ongoing...


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