Calling ALL Colorectal CANUCKS !

[Future_Med]

Canuckian eh CRGuy?? I like it

Aideen

[triciah]

To Luckduck,
I'm in the same boat as you. Onc told me in Sept that there were no more standard treatments for me. No more scans, blood tests, appointments, etc., just: that's it. Totally overwhelming at the time. Because I agreed to a Phase 1 trial, I did get another ct scan, bloodwork and appointments but I backed out at the last moment.
Anyway, I had tried asking what was ahead for me and wasn't told anything. I think because they don't know squat. So I took an advance on my life insurance. Paid for my parents to fly in for Christmas, paid for our whole family to go to Hawaii in January, and I'm deciding where to go next. We're going to more concerts and doing "in-city" things we've never done before. I'm not making long-term plans but I'm not lying in bed waiting for the end!
I know others have told you to get a second opinion and I want to share about mine. There was no point in getting another opinion here in Alberta because they all read the same guideline and there's only 1 health region. So I paid for 2 second opinions in the States. The first got me a thoracic surgeon in Texas who said he could do rfa on my lung mets. I was also accepted for a consult at MD Anderson in Houston (1 of the top cancer centers in the US) but they wanted me to go for a bunch of tests first costing $20,000 (probably a PET since I've never had one). So I asked my onc to do the out-of-country health expenses application form so that I could go. After a couple of weeks, she phoned to tell me that she couldn't do the form because the treatment wasn't "medically necessary" Here I hit our system's catch-22. The rfa wasn't "standard treatment" in Alberta so she wouldn't approve it. But in Alberta, only chemo is standard treatment for non-surgical lung mets, nothing else. So I realized that it didn't matter what MD Anderson suggested either, it wouldn't get approved.
I am fighting this and making a little bit of headway but not fast enough for me. I'm fighting to get another ct scan so I know where I'm at and bloodwork to see where my CEA is at. When I was told there was nothing else they could do, my CEA was only 4.1.
I am investigating another option and if I'm a candidate, I will pay for it myself as it isn't as expensive as the Texas options.

I think you may have better luck than me checking out different options in Toronto. One dr at Sunnybrook told me that they're looking at microwave ablation for lung mets but he wouldn't give me any more information that that.

All the best to you,
Tricia

[westie68]

Hi all: ('m posting to colon club even though I don't have colon cancer, yet; my chemo treatment has been the same as that given to colon cancer patients.)Can't remember if I posted this already (chemo brain for sure) but the surgeons in Calgary that do the peritoneal stripping and HIPEC procedure are at the Tom Baker Cancer Centre (Dr Wally Lamb is one of them). Good luck getting it done though as they apparently won't do it if there are mets other than to the peritoneum.
And a response to the last entry. I, too, am faced with the same thing here in Ontario. I have gallbladder cancer with mets to the peritoneum and liver (just found out about the liver one today). The gallbladder and its tumour and part of the liver were removed April 2010. I've been awaiting approval for the peritoneum stripping but because of the new met to the liver (only 2 cm) I will likely not be eligible. So I asked the big question - well, can't they just cut out the little liver tumour and then we're back at square one, on the list for the stripping? Well, nope, said the oncologist as the cancer board here likely wouldn't approve the surgery because of the mets to the peritoneum (chicken and egg thing). Even though it is tiny. Then I asked, well, what about further treatment. Again, the same problem. It appears if you have mets they write you off! I even paid for my last chemo regime (the oxaliplatin and irenotecan aren't covered for non-colon cancer patients)! My oncologist is going to fight for me as I've already lasted well past the dying deadline (2-3 months after prognosis - I've still here after almost 3 years!). I have a friend who was diagnosed with gallbladder/liver cancer 2 years ago; he lives in Saskatchewan. They told him nothing could be done for him and to go and settle his affairs (he was only 38). He quickly cashed in some money, drove to the Mayo Clinic in Minnesota and got the surgery he needed. It cost over $100,000 but he is alive and they still read all of his scans. He had to get the chemo he needed after the surgery - they suggested he go back to the Mayo for it!!!!!
CMP

[triciah]

Hi Westie68,
Could you have rfa or SBRT on your liver met in the States? I don't know how much it would be but I would think it would be cheaper than surgery there. Then maybe you could get back on the list for HIPEC.

Tricia

[wineoceros]

Great Idea Disco nap!,already got some great info here.Thanks

[CRguy]

About Integrative Medicine: we have nothing like InspireHealth in Edmonton...... I tried to get into a trial at InspireHealth but had to be a BC resident Tricia

Hey Tricia, just had my 90 minute follow up with an Integrative MD (she'll be starting the first of 4 more IH centers in BC in 2013) .... mentioned the CClub "CANUCK" thread hookup... and that someone had tried but been rejected.

Here's the scoop:

IF you are able to visit BC ( Vancouver center for now) for a Wed - Fri.,to do the 2 day "Life Plan" and 90 minute exam/interview with a BC registered MD.... you will BE in the system as an IH "patient." Once you are "IN" the system, you will have all the benefits of a local member and access to their new "virtual" Integrative Med online follow ups, OR phone calls to your own IH MD, or emails.

Let me know if you need more info or just wanna chat.

Cheers
CRguy

PS...this offer is also open to any other Canucks who are looking at Integrative Medicine for ANY stage of their CRC Journey....
PM me

[westie68]

Hi Tricia: Thank you for the idea - but I don't know what the acronyms stand for! Could you explain them to me? Thanks!
Cheryl

[CRguy]

SBRT
HIPEC
Just a couple of quick google references for you.

[triciah]

Hi Cheryl,
RFA is Radiofrequency ablation. Sorry, I don't know how to link.

Tricia

[westie68]

Hi crGuy and Tricia: Thanks! I know about HIPEC as I might be getting that procedure eventually but did not know the other one.
Cheryl

[westie68]

Sorry,forgot to add this. I don't know why they just can't stick into the tumour(s) a big needle full of lethal stuff!
CMP

[CRguy]

Quick update of info HERE for out-of-province patients or BC residents living at a distance from Vancouver ( or the other newly planned Inspire Health Centres. )

I have also added BCCA support group information to this topic : Support Group Information for Vancouver area and BC province

[triciah]

An interesting article in our weekly free local paper about a woman with colon cancer:
http://www.edmontonexaminer.com/ArticleDisplay.aspx?e=3472905

Quote from the article: "After being told by her doctor that nothing more could be done to save her, Rita did some research and discovered a revolutionary machine being developed by Edmonton researcher Dr. Gino Fallone."
It doesn't say that her doctor was an oncologist but you gotta wonder when a patient has to do her own research for treatment at the same cancer hospital!!
This machine got a lot of publicity here last summer when it was revealed.

Tricia

[westie68]

Hi: Doesn't surprise me a bit! When I was diagnosed with mets to the peritoneum, I prepared a file folder with all the information I could find on it because it is not common (I am a retired professor and research is my game). I presented the file to my oncologist as I figured I had more time to do this research than he did. And then when I found some errors and mis-interpretations in the CT and MRI scan reports, I constructed an EXCEL spreadsheet documenting them over time and also gave that to my oncologist to put in my file. by then he was not surprised. You have to do what you have to do. Many oncologists here in Canada are so busy that it seems they don't have the time to keep up with the latest stuff (but, really, in the same hospital????? that must have been embarrassing!).
Good for her!
CMP

[triciah]

So I don't know if I'm in too bad a mood to post this but this is how I've been feeling...
on this board and the other I frequent, there are lots of inspiring stories of stage IV'ers who are in their 7th or 8th year and others that are NED after being given no hope. I'm jealous!
It's extremely difficult to get a true second opinion (not one that is just a rehash of the first!) in Canada and we have no MSK to go to. Right from the start my oncs gave me no hope or believed that chemo would work well enough for me to become operable. I've come to believe that the only thing my cancer centre thinks I'm good for is to be a guinea pig for a Phase 1 trial. My onc told me that she would not recommend Xeloda for me but I should do a Phase 1 instead. I did not progress on 5FU and only had Xeloda once so there's no reason why I shouldn't have had the option of Xeloda. The interventional radiologist I saw suggested I have a ct scan so that I can make more informed decisions about my care but my onc wouldn't order one. I had to go to my family doctor for it. Also, my onc won't do heparin refills for me any more (she ordered them in the first place) and I was told through my pharmacy that my gp would have to do it.
Yes, this is a big vent and I apologize. I've been having various issues the last couple of weeks and my gp is just not sure what to do. I have my ct scan tomorrow and even though my gp knows the cancer centre will do nothing regardless of what shows up, she's hoping it will help her treat me. I may also find out that I'm a candidate for the special radiotherapy machine that I posted about earlier. If I am, it may help alleviate some of my issues.
It's been mentioned to me that maybe my letters to the head GI onc of the province wasn't the best idea.
Tricia