The Colon Club

I think there are private clinics here and in the states you can go to pay for a CTC - and a wuick google search will turn up a few. however, I always wonder if an onc would care about test results they themselves did not request? (Same with PET, I can pay for one - will an onc bother much with it?)

Thanks for the replies. My onc said she would order it if I could find somewhere to run it. About six months back she said she would get permission to run it and then the medical director transferred so she didn't feel that she could bend the rules with the new director. It sounds like it is not very reliable anyway. (that's my sour grapes voice).

I wanted to comment on my genetic testing in progress.

First, I will say I was impressed with how fast I got in to have my surgery, chemo, etc and how well I was treated throughout the process. I couldn't have asked for better care.

In September 2010, I went for genetic counselling in London Ontario as they suspect I am Lynch-positive. They said the results would take four months or so. We are now at 16 months and they do not have the results yet.

It's not a blood test type of thing, they have possession of the tumour and are doing a full workup, but geez...I am now operating as if I had a Lynch diagnosis and getting screened for the typical Lynch cancers every chance I get, and my family is on high alert also.

Kinda miffed at this.

Just sayin' hi to my canadian colonclub junkies....how are yeaz doin' eh??

While on the topic of exotic treatment options....just adding my two cents worth....HIPEC is available at only ONE hospital in Montreal....and out west (BC for sure).

As for PET's...they're a bitch to get in Ontario...but....if your CT results are inconclusive, your doc can send you for a followup PET.

Cheers everyone!

Disco nap,
16 months??? That's ridiculous! They could have cloned your tumor and sent it to university by now. I hate being the squeaky wheel but with our dx sometimes you have to be. I keep reminding myself that had I been a bit squeakier, I might have been dx earlier.
Ivona, we have Hipec in Calgary. Apparently, we have had it longer than some of the big cancer centers in the States.

We have HIPEC in Edmonton.
I've never had a PET scan but one of my friends did (for crc) but I think he may have asked for it.
16 months is ridiculous for genetic testing! It took about 3 months for my gene mutation testing and we thought that was a long time.

disco nap wrote:Kinda miffed at this.

Your composure and civility far exceeds mine....... "push" some hot buttons and kick ass, that is simply too long if any treatment / management /proactive plans are on hold because of it.
Time for a "Marketplace" segment ?? CBC "Go Public" or "Fifth Estate"... ????
Are there others you know about with similar complaints ???
Part of my reason for starting this thread was, maybe, to get some proactive action going. Sounds like this needs "summa That !"

Cheers and Harmony
CRguy

HELP!!!!! Dr. said: thats it!

by luckduck » Thu Feb 09, 2012 10:19 am

What's now? Dr. said thats it ! no treatment available . I'm in the dark, how long ? so many questions. i fell good and all seems good ,but my cea is going up in one montnh from 4 to 7. I want to travel while i can , but worry if things go down hill . OMG please! do you have any input ? any experience with a loved one ? anybody in the same boat? What are the signs of trouble i should be aware? my Oncologist is a stone face and wimp.... he only say :I don't know.... . I think I'm done with him.I'm in Toronto, I'm frustrated @#%&

Colon mets to liver resolved with resection and chemo. all clear!!!
2005 colon resection.
2006 liver resection
2 years remission
Crap is back, lymph nodes and lungs
zeloda+cpt-11.
cpt-11+avastin.
cpt-11+folfire+avastin
cpt-11+folfox
IMC18f1(trial)+oxiplatin
cpt11+erbitux finished treatment in november 2011, nothing available at the moment....

Hi luckduck!

You are in Toronto - are you being treated at Sunnybrook? Ask if you can be transferred either to their Palliative Care group, or to their Pain and Symptom Management group. Either one will still have you with an oncologist (but a different one than you have now), and these groups are far better at dealing with the situation that you are in now.

Please remember that Palliative Care does not necessarily mean that all treatment stops - they can, and do, use chemo or radiation to keep the symptoms under control and can definitely help you maintain the best possible quality of life.

As for travelling - well, if you are feeling up to it, why not? Do a little bit of research and get the best possible travel insurance coverage that you can (it'll be expensive because of pre-existing condition), but having the insurance will take a huge worry off your shoulders so that you can just go and enjoy yourself.

Finally, remember that there is ALWAYS hope. If not a hope for a cure, then hope for a remission, hope for a few extra months, hope for freedom from pain, and hope for a quality of life that allows you to still feel the love and joy that you've lived up until now. Your hopes will change from day-to-day and minute-to-minute. Some you'll let go of as things change, but some will be fulfilled, and you'll always have these as victories.

As long as you're still drawing breath, then you are LIVING!

Strongest thoughts to you,
Laurie

Luckduck, you can see any oncologist you want with a referral from your current onc or primary care physician, and in Toronto there are lots of choices. Have you looked into Princess Margaret or Mt Sinai hospitals? I think Princess Margaret has a large colorectal group with some very good people.

You could also ask about trials in the States (in places like Roswell Park in Buffalo), if nothing is available in Canada.

Best wishes,

Jeremy

Just wanted to update folks on some of the resources available from the Inspire Health Cancer Care Programs website

It is the only non-profit, government funded integrative health care program in the world... according to their sources. It integrates with the BC Health Care Plan and your own doctors, with doctor visits paid for by the BC provincial health plan. There are a number of MDs and ND, as well as other licenced complementary practitioners on staff and available for referral.

***************
UPDATE :
The programs are also available to out-of-province patients and caregivers or those BC residents not able to commute to any of the Centres, if you are able to arrange a 3 day Vancouver visit (Wednesday - Friday) for the program and doctor's appointment. They are about to launch their online Virtual Program Here to connect with these patients, once they have completed the two day Inspire Life Program and had the initial 90 minute doctor appointment.
***************

The 2010 Integrated Cancer Care Guide is available as a pdf Here ….. may require membership now

The online Research Update Newsletter is available as a pdf Here

The searchable online Research Database is available Here

I joined as a member and took the two day Inspire Life Program which I will post about later, but the above resources are available to anyone.
It is not specific to CRC, but Integrative Medicine management of cancer in general. Specifics can be discussed with individual practitioners (for members) or researched in the reference materials.

Cheers all
CRguy

Hi: Thanks CRguy for the information. I've downloaded the pdfs.
On another topic, I was told that the HIPEC procedure is now available in Toronto but not sure where. My oncologist is trying to get me to the surgeons in Calgary who have been doing it awhile.
Yup, travel insurance will be darn expensive if you have a pre-existing condition like cancer. But likely worth it! You need a break.
Cheryl

Glad you're diggin' it......I am impressed with the resources and the people at Inspire Health.
They are all about the "people inside the disease" rather than just the "disease" within the person.... which resonates with me on many levels.

PM Ivona, she would know about someone with HIPEC back east, I believe..if not then slap me for POST-chemo brain
Alberta has it, and I don't have a specific reference, but BC has it ?????

Another post here says Montreal ????? maybe check it out.

ALWAYS...on the Journey
CRguy

Like Tricia I am in Alberta. Just stopped bye to say Hi.New to this site

greetings fellow Canuckian ! let us know what is up in your neck of the woods.

Cheers
CRguy