Calling ALL Colorectal CANUCKS !

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

Re: Calling ALL Colorectal CANUCKS !

Postby nicola smith » Thu Apr 26, 2012 9:50 am

Cheryl, your observations are correct and disheartening. If anything, the federal government under its current leadership is taking an even more hands-off approach to health care than in the past, leaving each province to go its own way...notwithstanding that a healthy chunk - if not most - health care funding is done by way of federal transfer payments to the provinces.

You might find this link interesting as it kind of tells the story of how we got to where we are (at least from 1867 to 2004)
[url]
http://www.mapleleafweb.com/features/ca ... s#division[/url].

Edited to add that I think at this stage in our history, the only thing that could stimulate the political will to achieve national consistency in health services access/delivery/performance would be a national grass roots lobby/coalition operating effectively at every provincial level. The role of this lobby would be to let the provinces know we expect them to demand federal leadership in this area (and that we expect them to accept this leadership if/when it comes).
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

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

Re: Calling ALL Colorectal CANUCKS !

Postby westie68 » Fri Apr 27, 2012 1:49 pm

Hi: I know Deb Matthews, and the Ontario NDP, are talking about this but there is a lot of resistance in the system for sure. More people need to die needlessly I guess.
Cheryl

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

Circulating Cell Tests in Canada

Postby nicola smith » Mon May 07, 2012 8:15 am

I have been re-reading some of the older posts on circulating cell tests. It seems that Bev has had them but I can't find anyone else.

I'm really interested to know from those who have had the test, especially in Canada
- which test you had
- where it was performed
- how much it cost
- how long it took to get the results
- what you had to provide by way of test material (i.e. loads of blood or just a little?)
- whether the results had any impact on your oncologist's advice
- whether the results had any impact on your treatment decisions
- whether you will do it again
- whether you would recommend it for others

Many thanks

(also posting this on the main board)
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 » Mon May 07, 2012 9:24 am

Sorry this is long...I don't know how to post a link .......
Photos

The 20-minute process enables researchers to find one cancer cell among one billion healthy ones.

View Larger Image

CTV.ca News Staff

Date: Mon. Jan. 3 2011 8:21 PM ET

A blood test that can detect cancer or determine whether a cancer has begun spreading to other parts of the body has moved a little closer to your doctor's office.

Health care giant Johnson & Johnson announced Monday that two of its units will begin working with Boston researchers to bring the test to market. As well, four big U.S. cancer centres will start studies on the blood test this year.

The experimental test looks for stray cancer cells in the blood, which are cancer cells that have detached from a tumour and mean that a cancer has either spread, or is likely to. Left unchecked, these circulating cancer cells can grow into new tumours.

Circulating tumour cells are found at very low levels in the bloodstream and are hard to detect. While there is one test on the market that can spot cancer cells in the blood -- a test called CellSearch, also made by a J&J unit –- that current test can only give a cell count. It doesn't capture whole cells that doctors can then analyze to monitor disease progression and to choose treatments.

"This new technology has the potential to facilitate an easy-to-administer, non-invasive blood test that would allow us to count tumor cells, and to characterize the biology of the cells," said Robert McCormack, head of Technology Innovation and Strategy at Veridex, one of two J&J units -- Veridex and Ortho Biotech Oncology – collaborating on research on the blood test.

"Harnessing the information contained in these cells in an in vitro clinical setting could enable tools to help select treatment and monitor how patients are responding."

This newest test requires just a couple of teaspoons of blood, meaning patients might even be able to skip painful biopsies of cancer tumours.

Not only can the test detect cancer, it can be used to monitor treatment in already diagnosed patients.

The test is so sensitive that doctors can administer a cancer therapy one day and sample the patient's blood the next day to see if the circulating tumour cells are gone.

Ultimately, the test might also be able to go beyond screening for metastatic cancer to actually spotting primary cancer. That could one day mean that the test could replace uncomfortable cancer screening methods used now, such as mammograms, colonoscopies and PSA tests.

Lung cancer patient Greg Vrettos, 63, has been part of the Massachusetts research. The Durham, N.H. resident says before his cancer diagnosis in 2004, he had to undergo tissue biopsies, which left him with a collapsed lung.

He believes a blood test would be simpler, less invasive method that will help.find cancers earlier.

"If they could detect this sooner, that is huge. In any kind of cancer, the earlier the detection, the survivability is much higher," he told CTV.

Vrettos is now undergoing treatment for his cancer and still goes to Boston every three months for CT scans and the blood test. He says the test helps track cancer cells in his blood and helped his doctor spot a setback that required his treatment to be adjusted.

The test works with a microchip that is covered in tens of thousands of tiny bristle-like posts. The posts are coated with antibodies that bind to tumour cells.

When blood is forced across the chip, the cancer cells will stick to the posts. Stains then make the cells glow so researchers can count and capture them for study.

The test is said to be so sensitive that it can find even just one cancer cell in a billion or more healthy cells, said Mehmet Toner, a Harvard University bioengineer who helped design the test.

Studies of the chip have already been published in the journals Nature, the New England Journal of Medicine and Science Translational Medicine.

The agreement announced Monday will have Veridex and another J&J unit -- Ortho Biotech Oncology –- working together to improve the microchip, including trying a cheaper plastic to make it practical for mass production.

The companies will start a research centre at Massachusetts General Hospital and will have rights to license the test from the hospital, which holds the patents.

Dr. Shana Kelley, a professor in the Departement of Phramaceutical Science at the University of Toronto and an expert on molecular diagnostics, is part of a U of T team that's developing similar microchip technology that could one day help detect the proteins that are unique to specific cancers.

She says the field is seeing lots of promising developments.

"There is a lot of excitement around circulating tumour cells," she told CTV News. "But we don't have enough clinical data to be able to say whether or not we can use these as substitute of biopsies. But by taking them to a variety of [research] sites, they can get that data and there will be more certainty around it."

She added: "The possibility we could take a liquid biopsy, a blood sample, and see the cancer cells there, it might lead to early cancer detection, and that could transform treatment options."



Read more: http://www.ctv.ca/CTVNews/TopStories/20 ... z1uC4XfdoC

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

Re: Calling ALL Colorectal CANUCKS !

Postby smokeyjoe » Mon May 07, 2012 10:13 am

And I saw this ....but I didn't copy the whole thing....The CellSearch System identifies and enumerates the number of circulating tumor cells (CTCs) in a blood specimen.(1) Studies suggest that the number of CTCs is associated with progression-free and overall survival in patients with metastatic colorectal cancer.(2,3). You could google CellSearch System and see where it is available, from what I saw it's available in Rochester.

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

Re: Calling ALL Colorectal CANUCKS !

Postby CRguy » Mon May 07, 2012 11:27 am

Just FYI smokeyjoe and others :

click on the URL tab above the text box when you are composing your post.
It puts the url tags into the text box.
[url][/url]

Copy and paste your web address (full url) between the url tags and the post will show your url as a hotlink in blue text.
You must paste exactly between the square brackets so the url tags are complete on both sides [url]..your url address posted here..[/url]
and it must be a valid web address to work this way. Common mistakes involve pasting over one of the brackets, so the tags are not complete, or using a shortened web address from a browser shortcut menu.

(This bulletin board will also recognize a valid web address in plain text and convert it to a link, as happened at the bottom of your longer post, but again the address must be complete.)

PM me if you have problems or ask in this thread.
Cheers.
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

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

Re: Inspire Health update

Postby CRguy » Mon May 07, 2012 8:46 pm

Just an FYI for folks here interested in Integrative Cancer Care as practiced at Inspire Health :
Update Reports

yes yes I KNOW I was going to give my own "summary" and comments, but as a BCP (Board Certified Procrastinator) I have decided to deal with this...ummmm... tomorrow :shock: :oops: :mrgreen:
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 » Fri May 11, 2012 7:13 pm

I couldn't find any place in Canada that I could ask for Regorafanib expanded access. Anyone heard if we're getting a site?

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"

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

Re: Calling ALL Colorectal CANUCKS !

Postby nicola smith » Sat May 12, 2012 6:52 am

From the manufacturer’s page, I found this information about the availability of Xeloda in Ontario through OHIP. (pasted below with link). Xeloda is covered but the circumstances appear to be limited.
I also found that xeloda is covered by my private insurer…something my oncologist did not mention and I did not even think to ask about. Lesson learned.
http://drugcoverage.org/xeloda/English/contentDetails.asp?DrugID=%7BD41B1585-015C-4EFC-990C-4E90E35374BB%7D&LanguageID=1&ContentTypeID=10

NEWER INFO NOW LOCATED HERE :
https://www.shoppershealthcareportal.or ... /home.aspx

Xeloda is covered by the Ontario Drug Benefit (ODB) Program (including clients of the Trillium Drug Program) as a Limited Use (LU) Product and is listed in the Ontario Drug Benefit (ODB) Formulary/ Comparative Drug Index (Formulary) with the following clinical criteria:

Reason for Use Code 346 - For the first-line treatment of patients with metastatic colorectal cancer in whom combination chemotherapy is not recommended.
NOTE: Not to be used in patients who have failed 5-flurouracil.
LU Authorization Period: Indefinite

Reason for Use Code 360 - For the treatment of metastatic breast cancer where patients have progressed after prior chemotherapy.
LU Authorization Period: Indefinite

Reason for Use Code 406 - For adjuvant treatment of stage 3 or high risk stage 2* colon cancer in patients who have completed surgery (within three months), who would normally be candidates for adjuvant chemotherapy with 5FU/LV.
*high risk stage 2 colon cancer is defined as one of the following:
• obstruction,
• perforation,
• poorly differentiated adenocarcinoma,
• inadequate lymph node sampling,
• T4 tumour.
LU Authorization Period: 6 months

Reason for Use Code 409 - As part of the CAPOX regimen for the first-line and second-line treatment of metastatic colorectal cancer
LU Authorization Period: Indefinite

Xeloda can also be covered in other indications by the Ontario Drug Benefit Program on the basis of individual case request through the Exceptional Access Program (Individual Clinical Review mechanism). Exceptional Access Program Request Form – Requests for Patients outside the above listed criteria (Ontario Ministry of Health and Long-Term
Care Web Site)
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

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

Re: Calling ALL Colorectal CANUCKS !

Postby nicola smith » Sat May 12, 2012 7:03 am

triciah wrote:I couldn't find any place in Canada that I could ask for Regorafenib expanded access. Anyone heard if we're getting a site?

Tricia


Good news there has been a trial in Canada - bad news it is not currently recruiting. http://clinicaltrials.gov/show/NCT01103323
This link describes the trial and has an internal link to the test sites. Maybe you can get one of the sites near you to provide you with the drug on compassionate grounds.
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

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Calling ALL Colorectal CANUCKS !

Postby justin case » Sat May 26, 2012 12:28 pm

I'm just bumping this up, for a new member from Canada.
Regards,
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

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

Re: Calling ALL Colorectal CANUCKS !

Postby smokeyjoe » Fri Jun 01, 2012 3:05 pm

CR-guy feel free to fix this with a link so it's shorter!!! Just wondering if anyone has seen this. I had a colonoscopy yesterday and was not aware of this but.....

The nationwide shortage of critical medication is starting to hit patients in the Toronto area, with some being notified that elective surgeries and procedures have been delayed or cancelled.

The first wave of disruption in patient care is being seen at a privately run hospital specializing in hernia repair and at colonoscopy clinics that operate outside hospitals.

Related: Drug shortages loom over Canadian hospitals

Related: Drug shortage forces Ontario hospitals to share medication



Hospices in the GTA are also concerned about their supplies of injectable painkillers used to ease the final days of life.
As news broke this week of production problems at Sandoz Canada Inc., much of the focus centred on hospitals, some of which rely on more than 100 different generic drugs produced at the company’s Boucherville, Que., facility.

But some smaller health-care institutions say they are not receiving appropriate guidance from the provincial Ministry of Health on how to deal with the drug shortage and worry their patients will be left waiting too long for care.

Sandoz, a Swiss generic pharmaceutical giant that makes chemotherapy drugs and other intravenous medicine key for surgical and hospital care, was given a warning letter by the U.S. Federal Drug Administration in November, 2011 regarding quality concerns. A March 4 fire that broke out in the company’s Quebec facility has caused production to be suspended until March 12, further exacerbating the problem.

The Shouldice Hospital on Friday confirmed to the Star that some elective surgeries have been postponed due to the drug shortage. The privately run institution, which takes OHIP cards for payment, is a surgical hospital with 89 beds that specializes in hernia repair.

Daryl Urquhart, Shouldice’s director of business development, said the hospital has temporarily postponed some surgeries for patients who would require higher doses of anesthetics — a group of drugs affected by the Sandoz shortage — to stretch supplies and ensure the institution remains open for the remainder of its patients.

He said the “precautionary, preemptive step” will help the hospital serve the “vast majority — 95 per cent or more — of our patients.”

“We are postponing surgeries that are low-priority, elective cases until such time we are confident those cases are better served in a safe manner without jeopardizing healthcare to other patients,” Urquhart said. Shouldice conducts about 7,500 surgical procedures every year.

On Friday, the Mississauga Colonoscopy Clinic started cancelling all patient procedures scheduled for Tuesday, Wednesday and Friday of next week.

Dr. Michael Smith, the clinic’s owner, said he will run out of a key medicine — the widely used sedative Midaxolam — by the end of day Monday.

Though privately owned, the Mississauga Colonoscopy Clinic — considered an ambulatory clinic by the ministry — bills OHIP for performing colonoscopies on patients, many of whom are being screened for colorectal cancer. Smith said there are approximately 50 such clinics in Ontario and that his performs about 3,400 colonoscopies each year.

After becoming aware of the drug shortage Thursday morning, Smith said he quickly contacted the ministry for advice.

“They said they were allocating some medications to hospitals, but didn’t seem aware of the needs of ambulatory clinics,” he said, adding that his clinic is also in very short supply of painkillers, including Demerol. “This shortage is affecting the whole province and country, but it seems that we (ambulatory clinics) have been overlooked in the big equation.”

If he is unable to secure supplies of the needed drugs, Smith said that he will shutter his clinic and layoff his eight-member staff until the shortage problem is solved.

Martin Gillen, administrative director the Rudd Clinic/Provis Group — the largest endoscopy group in Ontario performing about 50,000 procedures each year — said the group’s four stand-alone clinics have no more than a two-weeks supply of critical drugs.

“Our present supplies on hand will allow us to continue engaging in our procedures comfortably for another one to two weeks and then we run out of medication supplied by Sandoz,” Gillen said. If the clinic is unable to secure another supplier, Gillen said some procedures will have to be delayed or patients will have to decide whether they want to undergo procedures without pain medication.

The drug shortage is also starting to affect patient care at hospices in the GTA, said Karina Wulf, manager for palliative services at the Etobicoke-based Dorothy Ley Hospice and who called the situation “very concerning.”

The main concern for physicians treating patients at the end of life is a scarcity of injectable painkillers, including morphine, which Wulf said is critical to help a patient manage pain in the final days.

On Friday, four hospices, including the Dorothy Ley Hospice, held a conference call to discuss best practices in the face of the protracted drug shortage. One strategy that will be implemented immediately is to treat patients with oral medications for as long as possible to stretch supplies of the injectable painkillers.

But, Wulf said, that can only be an interim strategy since swallowing often becomes difficult at the end of life.

“We are trying to be as preemptive as possible and at same time making sure we do have some injectable medications for each individual in case we really do need them,” Wulf said.

So far, she said, the health ministry has not yet contacted the Dorothy Ley Hospice about whether it will be allocated additional drugs if needed.

It was not clear Friday whether the ministry has started to prioritize access to critical medication in the province.

According to a ministry spokesperson, the government has not received reports of drug shortages in any health-care facilities.

“At this point in time, the ministry is focused on ensuring the continuity of services in acute care, long-term care, home care, and palliative care settings.”

A technical advisory group, assembled by the province, will help support this work, the spokesperson said, which includes the “prioritization of existing supply should that be necessary.”

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

Re: Calling ALL Colorectal CANUCKS !

Postby CRguy » Fri Jun 01, 2012 3:34 pm

I first saw the article HERE, in March, but there have been ongoing discsussions since last year and production problems in the global market are, sadly, nothing new :(

Further info and updates can be viewed at these sites :
http://www.pharmacists.ca/index.cfm/cpha-on-the-issues/advocacy-government-relations-initiatives/drug-shortages/

http://www.drugshortages.ca/home.asp?l=en ( …. Looking for the new site ! )

The Gov-Canada site also publishes timely updates on any health related matter and their email feed can be subscribed to or browsed online HERE It also covers recalls, health warnings and dangerous/illegal drug imports.

Many replacement sources are being found and approved for use in Canada. This coincides with the recent international SecuringPharma initiative which started as a result of counterfeit drugs from PRC and the Middle East showing up in European and N. American drug procurement channels.

(( Securing Pharma is now known as Securing Industry but the link still works ))

Just a little light reading :shock:
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 » Wed Jun 13, 2012 3:31 pm

Westie/Cheryl....just checking to see how you are!! Hope all is well with you.

tammylayne
Posts: 2177
Joined: Fri Jul 16, 2010 9:24 am

Re: Calling ALL Colorectal CANUCKS !

Postby tammylayne » Wed Jun 13, 2012 5:13 pm

I have been trying to contact Cheryl as well. We live in the same city and get together for coffee...I haven't heard from her in almost 2 weeks. I am getting worried.

Cheryl?????????
51 F
'06 Stage 1 CC,
'10 Stage 3 Rectal

"You never know how strong you are until you have to become your own hero."


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