Calling ALL Colorectal CANUCKS !

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

Calling ALL Colorectal CANUCKS !

Postby CRguy » Fri Jan 27, 2012 12:20 pm

This post is just to start a topic which relates to Canadian CRC patients / caregivers, finding information and resources specific to the Canadian Health Care system.

The idea was started in another thread by IceGal
I found that the trick to it was to find out where the treatment I wanted was covered and get their trial information to bring back to my onc. If yours is willing to work with you, they can take the abstracts (and contact info if you can get it) in for approval by the province.
I propose we use this topic thread to post information about such treatments, to make other members aware of our own experiences and items from other provinces.

triciah's topic Here is actually the first bit of information we've shared about options for lung mets.

Cheers to all !
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
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Slug
Posts: 112
Joined: Fri Aug 19, 2011 3:09 pm
Location: Toronto, Ont

Re: Calling ALL Colorectal CANUCKS !

Postby Slug » Fri Jan 27, 2012 2:16 pm

Here is a question

Does a CT scan pick up infected lymph nodes, or can only a PET scan do that...and why do the Candian doctors only use CT scans (at least they did on my wife)
Not sure if this has been addressed before, but would like to see from any Canadian experiences
Wife dx with cc March 2011
Resection April 19, 2011
0/21 lymph nodes
Clear margins
Stage 2B
12 rounds of folfox6 Finished Nov 15
CT Scan clear Dec 5/11
Clean Colonoscopy March 30/12
CT Scans Clear June 27/12, Dec 3/12, Dec/13, Sept/14

disco nap
Posts: 989
Joined: Sat Aug 07, 2010 10:45 am

Re: Calling ALL Colorectal CANUCKS !

Postby disco nap » Fri Jan 27, 2012 2:43 pm

Slug wrote:Here is a question

Does a CT scan pick up infected lymph nodes, or can only a PET scan do that...and why do the Candian doctors only use CT scans (at least they did on my wife)
Not sure if this has been addressed before, but would like to see from any Canadian experiences



The answer is yes, a CT scan will pick up enlarged lymph nodes. My original CT scan showed enlarged lymph nodes, so I knew I was at least a stage III and needing chemo right off the bat.

In Ontario, they will cover a PET scan if CEA is rising and CT scan results are "negative or equivocal". And, there are private clinics (one in Mississauga) that will do them for anyone wo pays them, for about $2500 if you would like.

https://www.petscansontario.ca/

http://micpetct.com/
DX July 2 '10 CC Stage IIIC, 11/18 nodes+
Right Hemi July 6 '10
Folfox: Aug 17'10 - Feb 17'11
Mar 13 '12: Lynch Syndrome MLH1
"Declared well" and been well ever since.
Update: June 2017 - still NED.

Slug
Posts: 112
Joined: Fri Aug 19, 2011 3:09 pm
Location: Toronto, Ont

Re: Calling ALL Colorectal CANUCKS !

Postby Slug » Fri Jan 27, 2012 2:49 pm

Thanks disco nap...that answers my questions

I like this all new Canadian thread already...
Wife dx with cc March 2011
Resection April 19, 2011
0/21 lymph nodes
Clear margins
Stage 2B
12 rounds of folfox6 Finished Nov 15
CT Scan clear Dec 5/11
Clean Colonoscopy March 30/12
CT Scans Clear June 27/12, Dec 3/12, Dec/13, Sept/14

disco nap
Posts: 989
Joined: Sat Aug 07, 2010 10:45 am

Re: Calling ALL Colorectal CANUCKS !

Postby disco nap » Fri Jan 27, 2012 3:22 pm

Gonna give this link also, it explains drug coverage in Canada - what's covered by what province and to what extent (for cancer and other conditions). It even provides info on many of the more common drug coverage plans.

http://www.drugcoverage.ca/en-ca/

It's interesting to see the variance by province. Choose Neulasta to see a good example.
DX July 2 '10 CC Stage IIIC, 11/18 nodes+
Right Hemi July 6 '10
Folfox: Aug 17'10 - Feb 17'11
Mar 13 '12: Lynch Syndrome MLH1
"Declared well" and been well ever since.
Update: June 2017 - still NED.

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

Re: Calling ALL Colorectal CANUCKS !

Postby smokeyjoe » Fri Jan 27, 2012 7:52 pm

My scans have shown enlarged lymph nodes, when I saw the onc. in Dec. he said they had "changed", I have no clue what he meant by that, but he thought maybe some of the nodes are slightly enlarged as a reaction maybe to the lovenox shots I give myself in the belly as all these enlarged nodes seem to be right in that vicinity. Based on that scan he continued with my chemo break, and I go for scan again in March. At one time I asked about PET scan, he talked about the radioactive dye they use and he just seemed totally against it.... :|

IceGal
Posts: 39
Joined: Fri Dec 09, 2011 6:28 pm
Location: Calgary, AB

Re: Calling ALL Colorectal CANUCKS !

Postby IceGal » Fri Jan 27, 2012 9:38 pm

Just a note with regard to the PET scans - there are very few publicly funded scanners in Canada, and not very many techs certified on them (so they can't necessarily run the machines 24/7). The attached link is a couple of years old, but from what I've heard there haven't been many added since this time.

http://cadth.ca/en/products/environment ... nners-2009

They are now adding one more here in Calgary (http://www.albertahealthservices.ca/5948.asp) but that is nowhere near the number of machines that would be needed for our physicians to use PET scans as often as in the US.

This lack of machines, along with the cost of scans, is why the "covered" reasons for scans are so limited here. Disco nap's information as to what is actually covered in Ontario is a great example of this.

That said, anyone I know who has "needed" a PET scan has been able to get one within a reasonable time frame, with a couple of them sent to other provinces to get on to an available machine if they couldn't fit them in to the closest one locally.
dx 09/21/11 CC Stage II T4b N0 Mx
Right hemicolectomy 09/22/11
Xelox 8 cycles begun 11/22/11
Oxali dropped after 2 cycles due to side-effects; Xeloda only
Chemo done 05/07/12
Hysterectomy 07/24/12 benign
NED 'til 07/15/15 - whole pile of lung thangs on the CT
hangin' in for biopsy and treatment plan...

thiemanndi
Posts: 79
Joined: Fri Feb 06, 2009 9:49 pm
Facebook Username: Dianne Bottomley Thiemann
Location: Canada

Re: Calling ALL Colorectal CANUCKS !

Postby thiemanndi » Sat Jan 28, 2012 10:39 am

Thanks for starting this thread. I have often wondered just how many Canucks are members. Now to my question. Can someone explain to me in simple terms the difference between a CT scan and a PET scan? I had never heard of a PET scan before joining.
Di
09/2003 Dx Rectal Ca
10/2003 surgery & temp ileo
extremely low anastamosis
12/2003-06/2004 Chemo (5fu) & chemo/radiation
multiple obstructions beginning Oct 2011
Not coping so well anymore!
Reconstructive Surgery Scheduled for October 13 2016

disco nap
Posts: 989
Joined: Sat Aug 07, 2010 10:45 am

Re: Calling ALL Colorectal CANUCKS !

Postby disco nap » Sat Jan 28, 2012 3:18 pm

Well, a CT scan takes pictures of the actual stuff inside you, in cross-sections. A PET scan measures metabolic activity so cancerous things that presumably have this activity will glow on the scan picture.

If you do a google search on CT scan and PET scan and look at images, you can see the difference between what a CT captures and what a PET captures by seeing pics of actual scans.

I'm trying to think of a good analogy and can't - I'll post again if one comes to me.
DX July 2 '10 CC Stage IIIC, 11/18 nodes+
Right Hemi July 6 '10
Folfox: Aug 17'10 - Feb 17'11
Mar 13 '12: Lynch Syndrome MLH1
"Declared well" and been well ever since.
Update: June 2017 - still NED.

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CRguy
Posts: 9026
Joined: Sun Feb 10, 2008 6:00 pm

Re: Calling ALL Colorectal CANUCKS !

Postby CRguy » Sat Jan 28, 2012 4:04 pm

thiemanndi wrote:.. Can someone explain to me in simple terms the difference between a CT scan and a PET scan?

Just another explanation from an old post of mine :
Xray and CT scans use ionizing radiation (xrays) to produce an image on film or now directly onto a digital medium (with or without contrast media which can enhance the images) think of an xray as a photgraph in 2 dimensions and a CT as a hologram constructed in 3 dimensions.

They show "structure" as does an MRI.

PET uses labelled contrast (usually fluorine on glucose), very low level radioactive molecules, which go to metabolically active sites. and image is formed from collecting the escaping 'rays' to a digital imaging device.

This shows metabolic activity and is usually matched up with a CT scan for exact positioning.


So what a lot of us will have is a "mass" found somewhere on Xray, CT, MRI and then a PET scan to see how metabolically active it is.

In a nutshell.

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

triciah
Posts: 92
Joined: Wed Nov 09, 2011 8:10 pm
Location: Canada

Re: Calling ALL Colorectal CANUCKS !

Postby triciah » Sun Jan 29, 2012 9:24 pm

Further to the drug information as to what is covered: this is from the Colorectal Cancer Association of Canada:

Access to cancer drugs in Canada varies significantly among provinces, resulting in inequities across the country. Some provinces have cancer agencies that fund cancer treatments. In others, cancer treatment is funded on a hospital by hospital basis. Many provinces fund IV medications, but only four provinces fund oral medications. As a result, oral drugs are more typically paid for by private drug plans or cash. Certain new IV oncology drugs have been approved by Health Canada, but not approved for provincial funding, which leaves many patients in limbo. The necessary drug is available — sometimes even in a hospital — but there is no one to cover the cost.

In other words, Xeloda, because it is not an IV drug, is not paid for by 6 provinces! I know it's paid for in Alberta and not in Ontario but I don't know about the rest.
I know many oncs think Xeloda is just 5FU but I, for one, had to switch to Xeloda (although for only 1 round) when I developed a blood clot behind my central line. I was told I couldn't have any more lines put in. We are still looking at Xeloda as an option for me.

Tricia
Dx Stage IV 12/09
Ileostomy 1/10
Rad 2/10
Surgery 5/10
FOLFOX + Avastin 8/10-11/10
Iri 4/11 and 6/11
Vect 8/11-9/11
Multiple lung mets
03/12: swollen lymph nodes, possible liver met, 3 bone mets
"I am His and He is mine"

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CRguy
Posts: 9026
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Re: Calling ALL Colorectal CANUCKS !

Postby CRguy » Sun Jan 29, 2012 11:23 pm

triciah wrote:In other words, Xeloda, because it is not an IV drug, is not paid for by 6 provinces! I know it's paid for in Alberta and not in Ontario but I don't know about the rest.

Well lemme tell you about me and BC !.... funded 100% as part of chemorad, pre-surgery in May - July 2007.
NOT funded...and NOT reimbursable through Screwed Blue Cross, as adjuvant chemo in Oct 2007.

Don't even get me started on this story... but some Canucks NEED to know the story : "don't assume, check everything thrice...then still expect Snafu !" with some of these buttheads !

On the Journey
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

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

Re: Calling ALL Colorectal CANUCKS !

Postby smokeyjoe » Mon Jan 30, 2012 10:18 am

Hi everyone, I have a question, and I know that everyone is different and each situation is unique...but, I'm Stage 1V, was on Folfiri from Feb. till Oct.. In Oct. my onc. asked if I wanted to take a short chemo. break, he was suggesting a couple of weeks at the most....I came back with I didn't want chemo till after next scan. Three months went by and had the scan. Scan showed no activity so this "break" has continued, and I go for scans again in March. I suppose if nothing shows up (HOPEFULLY) this will continue??? Has anyone had an extended break from chemo. that's lasted for an extended period of time??

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CRguy
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Recent happenings BY CANUCKS !

Postby CRguy » Mon Jan 30, 2012 12:09 pm

Keeping with the Canuck theme, I have come across a few new items which may be of specific interest to colorectal Canucks.
First is a new blogger and recent CRC diagnosee from the Toronto area. Andy Frank (…..requires Gmail login )

Next is a story of a cancer bracelet, fuckcancer embrace life which I had mentioned a few years ago, connected to a Vancouver artist, Susan Fiedler's story and the first Integrative Medicine / Healing practice in BC Inspire health.

Since Canadians go a mari usque ad mare, I also found a similar site on the east coast Healing and Cancer Foundation

I mention the Inspire Health connection again, as I am planning to visit and get a feel for what they do, and what they can do for me.... stay tuned. If anyone else has experiences with them, please let us know.

Cheers all
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

triciah
Posts: 92
Joined: Wed Nov 09, 2011 8:10 pm
Location: Canada

Re: Calling ALL Colorectal CANUCKS !

Postby triciah » Mon Jan 30, 2012 12:41 pm

to smokeyjoe: can't help you there as whenever I had a (even short) chemo break, my tumours grew. Actually they grew when I was on the 2nd and 3rd lines of chemo too.

About Integrative Medicine: we have nothing like InspireHealth in Edmonton. I wrote a letter to our provincial GI tumour team and mentioned the lack of integrative/complementary/alternative information and was just ignored. No surprise there. I tried to get into a trial at InspireHealth but had to be a BC resident :(

Tricia
Dx Stage IV 12/09
Ileostomy 1/10
Rad 2/10
Surgery 5/10
FOLFOX + Avastin 8/10-11/10
Iri 4/11 and 6/11
Vect 8/11-9/11
Multiple lung mets
03/12: swollen lymph nodes, possible liver met, 3 bone mets
"I am His and He is mine"


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