Calling ALL Colorectal CANUCKS !

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disco nap
Posts: 992
Joined: Sat Aug 07, 2010 10:45 am

Re: Recent happenings BY CANUCKS !

Postby disco nap » Mon Jan 30, 2012 5:38 pm

CRguy wrote: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.



Cheers all
CRguy


I have one of these bracelets and love it - it takes awhile for people to read what it says. A bit hit in the chemo suite for sure :lol:

Thanks for starting this thread, I have learned a few things already.
DX July 2 '10 CC Stage IIIC, 11/18 nodes+
Right Hemi July 6 '10
Folfox: Aug 17'10 - Feb 17'11
Mar 2012: Lynch Syndrome MLH1
"Declared well" and been well ever since.
Update: Jan 2023 - still NED.

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

Re: Recent happenings BY CANUCKS !

Postby CRguy » Mon Jan 30, 2012 5:51 pm

disco nap wrote:- it takes awhile for people to read what it says.
Thanks for starting this thread, I have learned a few things already.


I heard it was intended to look like an ECG tracing to kind of catch people off guard at first !

Yeah, I think we can shake some cobwebs out of some bureaucrat's heads if we all share "what IS and what ISN'T" across the land :mrgreen:
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

Future_Med
Posts: 138
Joined: Sun Mar 06, 2011 7:15 pm

Re: Recent happenings BY CANUCKS !

Postby Future_Med » Mon Jan 30, 2012 6:22 pm

CRguy wrote:
disco nap wrote:- it takes awhile for people to read what it says.
Thanks for starting this thread, I have learned a few things already.


I heard it was intended to look like an ECG tracing to kind of catch people off guard at first !

Yeah, I think we can shake some cobwebs out of some bureaucrat's heads if we all share "what IS and what ISN'T" across the land :mrgreen:
Cheers
CRguy


My mom just got me one of these for my birthday. I love that it takes people a minute to actually figure out what it says, and also am loving that it looks like an ECG tracing seeing as my intention is to go to med school eventually.

I'd also like to say thank you for starting this thread. Have learned some things about what is and isn't available/covered in different provinces, and I'm sure I'll continue to learn more as time goes on.

Aideen
Diagnosed colon cancer Stage 1 November 30, 2010 Age: 27
Collectomy December 24th, 2010
Genetic Testing back December 19th 2011. Familial Adenomatous Polyposis confirmed

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CRguy
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Re: NEW for Colorectal CANUCKS !

Postby CRguy » Tue Jan 31, 2012 12:17 am

Glad to be of service buddy !!!!
...and just so you know I am not dozing off in LotusLand out here :

Just another one, off the news feeds :
Personalized medicine, as in genetic markers and such to drive therapy, has been officially blessed by the Gov't, and funded !.....HERE with the functional weblink HERE.... ( BTW....... I NEVER allow any website to use space on my hard disk.... Never ! )

Believe me I am loving the press release rhetoric, but am hoping there is no "sponsorship scandal" in the making ... :shock: :shock: :shock: The list of usual suspects might seem a little too "tight" for my liking :twisted:
JMO, and what do I know...I am from BC :shock:

Reserving my "cheers' until we get some rubber hitting the tarmac on this one.
Still, we can dream.
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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CRguy
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Joined: Sun Feb 10, 2008 6:00 pm

Re: Calling ALL Colorectal CANUCKS !

Postby CRguy » Tue Jan 31, 2012 1:41 am

On a more serious note, I just wanted to cross-post this here, because it is from the topic which inspired this one, and is Right ON !
Fightin' with "system", empowered with knowledge and experiences from across Canada.... is what this is all about !
triciah wrote:Got to speak to an interventional radiologist on Friday (Hurrah!!)
He told me that, contrary to the head onc here, rfa for lungs is not experimental and is licenced by Health Canada and is done in many provinces. He also said that microwave ablation is not experimental and he thinks it's licenced but no one is doing it yet in Canada. Cyberknife was licenced by Health Canada in 2006 even before it was available here. It's now available in Ottawa, Hamilton and Montreal.
I'm in the middle of a fight with our provincial crc tumour team to recognize these procedures as valid treatment options.

Voices need to be heard.
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

westie68
Posts: 137
Joined: Tue Jan 31, 2012 11:22 am

Re: Calling ALL Colorectal CANUCKS !

Postby westie68 » Tue Jan 31, 2012 1:44 pm

Hi all: First off, I don't have colon cancer (yet!) but have been treated with chemo as though I have. So Smokeyjoe suggested I submit to this discussion board. I have gallbladder cancer (removed April 2010) with spread to the peritoneum and maybe to the liver (nuclear test on Thursday). The first line of chemo treatment was standard for gallbladder cancer - cisplatin + gemcitibine - (12 treatments) and this was covered by Cancer Care Ontario (Canada). That didn't work on the several peritoneal nodules I have so my oncologist tried what is normal for colon cancer I t hink - oxaliplatin + irenotecan + 5fu pump + leucovin (or however that is spelled). Unfortunately, I had to pay for this treatment except for the 5Fu and leucovin as it is not covered by CCO for non-colon cancer patients. My medical insurance, ManuLife, did not cover it either as they expect CCO to cover all chemos administered in a hospital-like setting and so they will not cover IV treatments (don't know about oral chemos). I had 12 treatments of this rather nasty cocktail but survived. It did work to shrink some of the nodules and stabilize the others. But it was expensive about $2500/treatment plus chair costs of $100/hr (and the treatment is 4.5 hrs). Of course I'll submit on my 2011 taxes. I should add that both gallbladder and peritoneum cancer is very very rare and there do not appear to be standard treatments out there. Even the standard surgical protocols for this disease are not followed.
My question is - has anyone else had this experience? Is there anything that can be done about it? I know oxaliplatin has only been available in Canada since 2009 and it took awhile to be covered for colon cancer patients (I'm not sure all of them though). To me it seems ridiculous when it the standard, at least for colon cancer, throughout most of the world is oxaliplatin, as far as I can tell, and some provinces, i.e. British Columbia, do cover almost all of the chemo drugs. Thanks!

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

BC - Vitamin D study recruiting

Postby CRguy » Tue Jan 31, 2012 4:24 pm

Just an FYI for BC folks who may be interested in knowing about this study Vit D Study
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

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

Re: Calling ALL Colorectal CANUCKS !

Postby triciah » Tue Jan 31, 2012 6:46 pm

Hi Westie68,
Sorry you've had to foot the bill for these treatments. I checked our Alberta guidelines and it doesn't appear that the crc drugs are covered for your situation here either. I can only suggest that you dig deep for some info as to guidelines in Ontario. Search cancercare.on.ca (don't know how to link) for anything dealing with unfunded drugs. Also, try cancerguidelines.ca (SAGE) and search for guidelines pertaining to your cancer. Basically, look for an address or email of someone that you can contact with your story. Make noise. Here in Alberta, we have provincial tumour teams and that's who I contacted with my issues and I might actually be getting somewhere (I did threaten to go public!) In my book, use whatever you can to fight this and if that means playing the "pity" card, do it. Write a letter to the head of CCO, Manulife, your MPP, MP, whatever it takes. I was told that I should go to the local tv station but I haven't needed to go that far.
When I wonder if it's worth it, I just think of the next person who might be in my situation who doesn't have the energy to fight. If 1 person gets a better deal than me in the future, it was worth it.
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"

disco nap
Posts: 992
Joined: Sat Aug 07, 2010 10:45 am

Re: Calling ALL Colorectal CANUCKS !

Postby disco nap » Tue Jan 31, 2012 7:28 pm

westie68 wrote:Hi all: First off, I don't have colon cancer (yet!) but have been treated with chemo as though I have. So Smokeyjoe suggested I submit to this discussion board. I have gallbladder cancer (removed April 2010) with spread to the peritoneum and maybe to the liver (nuclear test on Thursday). The first line of chemo treatment was standard for gallbladder cancer - cisplatin + gemcitibine - (12 treatments) and this was covered by Cancer Care Ontario (Canada). That didn't work on the several peritoneal nodules I have so my oncologist tried what is normal for colon cancer I t hink - oxaliplatin + irenotecan + 5fu pump + leucovin (or however that is spelled). Unfortunately, I had to pay for this treatment except for the 5Fu and leucovin as it is not covered by CCO for non-colon cancer patients. My medical insurance, ManuLife, did not cover it either as they expect CCO to cover all chemos administered in a hospital-like setting and so they will not cover IV treatments (don't know about oral chemos). I had 12 treatments of this rather nasty cocktail but survived. It did work to shrink some of the nodules and stabilize the others. But it was expensive about $2500/treatment plus chair costs of $100/hr (and the treatment is 4.5 hrs). Of course I'll submit on my 2011 taxes. I should add that both gallbladder and peritoneum cancer is very very rare and there do not appear to be standard treatments out there. Even the standard surgical protocols for this disease are not followed.
My question is - has anyone else had this experience? Is there anything that can be done about it? I know oxaliplatin has only been available in Canada since 2009 and it took awhile to be covered for colon cancer patients (I'm not sure all of them though). To me it seems ridiculous when it the standard, at least for colon cancer, throughout most of the world is oxaliplatin, as far as I can tell, and some provinces, i.e. British Columbia, do cover almost all of the chemo drugs. Thanks!


So, if I understand, there is no protocol treatment for your cancer and therefore no cancer drugs are covered?

Ok - one option is to approach drug companies for rebates. My neulasta was $$$ and not covered and the company rebated whatever my workplace drug plan would not cover.

Another option is to tell your tale to the media - I think it's an important one. How can our medical system deny care to a cancer patient?

Another option is to ask whether there is anything available out of country.

Tough spot. I think you have your work cut out for you.
DX July 2 '10 CC Stage IIIC, 11/18 nodes+
Right Hemi July 6 '10
Folfox: Aug 17'10 - Feb 17'11
Mar 2012: Lynch Syndrome MLH1
"Declared well" and been well ever since.
Update: Jan 2023 - still NED.

westie68
Posts: 137
Joined: Tue Jan 31, 2012 11:22 am

Re: Calling ALL Colorectal CANUCKS !

Postby westie68 » Wed Feb 01, 2012 9:10 pm

Hi: The usual protocol for gallbladder cancer is chemo using cisplatin and gemcitibine. This is completely paid for. My private plan covered the very expensive Neulasta injections. However, in my case, the gallbladder cancer spread to the peritoneum and that treatment didn't do much. My oncologist had found one case where oxaliplatin + irenotecan + 5FU was more successful for treating peritoneum cancer arising from the gallbladder. And it did work in part.
Did that answer your question?
CMP

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Canadianmom
Posts: 603
Joined: Wed Nov 03, 2010 6:29 pm

Re: Calling ALL Colorectal CANUCKS !

Postby Canadianmom » Thu Feb 02, 2012 7:01 am

What a great and informative thread. Often, it seems that some of the info here doesn't seem to pertain to us Canadians.
30/09/10 Dx mCRC/ 39 yrs old
08/11/10 liver met; Stage IV
23/11/10 PET 2 lit LNs
25/11/10 RFA to liver met
13/12/10 Folfox 6 plus Avastin.
15/03/11 After 7 rounds. NED. No further tx. 2014 still NED
Praying for patience and strength.

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Canadianmom
Posts: 603
Joined: Wed Nov 03, 2010 6:29 pm

Re: Calling ALL Colorectal CANUCKS !

Postby Canadianmom » Fri Feb 03, 2012 8:52 pm

Hello fellow Canadians. Just wondering if anyone has had a CTC test in Canada. My onc says that our cancer center does not do them.
30/09/10 Dx mCRC/ 39 yrs old
08/11/10 liver met; Stage IV
23/11/10 PET 2 lit LNs
25/11/10 RFA to liver met
13/12/10 Folfox 6 plus Avastin.
15/03/11 After 7 rounds. NED. No further tx. 2014 still NED
Praying for patience and strength.

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

Re: Calling ALL Colorectal CANUCKS !

Postby CRguy » Fri Feb 03, 2012 9:12 pm

As of June 2010, BCCA says it has not been validated here at the Vancouver centre. They were not happy with the technology, so wanted their own machine, in house, to tests their own methods instead. Haven't heard since, but will remember to ask on next visit.

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

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

Re: Calling ALL Colorectal CANUCKS !

Postby triciah » Sat Feb 04, 2012 1:21 am

Pretty sure I haven't had one since I don't know what it is. Please explain what a CTC test is.
Thanks,
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"

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

Re: Calling ALL Colorectal CANUCKS !

Postby CRguy » Sat Feb 04, 2012 12:13 pm

triciah wrote:Pretty sure I haven't had one since I don't know what it is. Please explain what a CTC test is.
Thanks,Tricia

Circulating Tumor Cell... Website HERE with the patient brochure giving the details HERE

Have not found any use in Canada so far ??? There is also a similar less specific version (different company and technology) for monitoring use in animals. We've had limited experience with it so far.

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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