Calling ALL Colorectal CANUCKS !

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nicola smith
Posts: 1039
Joined: Thu Oct 07, 2010 9:06 am

Re: Calling ALL Colorectal CANUCKS !

Postby nicola smith » Tue Mar 06, 2012 9:07 am

I share Triciah's frustrations. It's galling and heartbreaking to know other options are out there and Canadians can't get access

What success have other Canadians had in getting follow-up treatments that are supposedly 'outside the box' for your stage of colon or colorectal cancer? If you have gone 'outside the system' for your treatment (e.g. private testing/treatment in the US or elsewhere, or going to another province), where did you go and how did you cover the costs? Was your oncologist open to looking at the results and incorporating them in your treatment?

For example, for stage 3-ers, my oncologist and/or his system won't support PET scan, MRI, X-ray, circulating cell test, C-19 or genetic testing. The only follow-up authorized by 'standard of care' is CEA tests every three months and CT scans annually....unless the CEA starts going up in which case a PET scan might be authorized.

p.s. Triciah, what is the heparin for?
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 » Tue Mar 06, 2012 10:11 am

I know the frustration, it seems there are all sorts of things being done for patients in the U.S. that in Canada our oncs. and surgeons won't even consider doing!!!! I had a follow up appt. with my surgeon. I've been off chemo. since October, and am over 1 year since my colon surgery. He said typically after 1 year he does colonoscopy, but in my case he was going to wait till my next scan (which is this week) and only if there is no progression would he do a colonoscopy. Seems no matter what people in the U.S. are getting their 1 year colonoscopy. So, if I'm still clear I'll get colonoscopy....I then asked him "what if you find something during the colonoscopy what would you do then?" He paused for a while looked and me and said "That's a good question". He thought some more and then responded depended on what he found, maybe more surgery. But, whole thing seems based on whether me as a stage 1V remaining stable while not on chemo. whether or not they will even do so much as a routine colonoscopy.

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

Re: Calling ALL Colorectal CANUCKS !

Postby smokeyjoe » Tue Mar 06, 2012 10:12 am

Tricia, can't you get the heparin through your G.P.???

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

Re: Calling ALL Colorectal CANUCKS !

Postby IceGal » Tue Mar 06, 2012 10:58 am

Oh, Tricia, I hear your frustration!

Our oncs are pretty much bound to follow the provincial Clinical Guidelines (if you haven't seen it, let me know and I'll send you a copy) and the first recommendation on there is a Clinical Trial, so I can see why your onc is suggesting it.

Has she told you which trial she wants you in? The reason I'm asking is that Canada replicates all trials done in other countries before drugs are approved. The Stage I trial that she is talking about could very well be for Regorafenib, which is currently being fast-tracked in the US. This could be a great chemo drug for you and it's well worth checking to see exactly which trial it is that she's looking at for you. Could be that she'd rather see you try something that might get you to NED instead of just staying stable on the Xeloda.

As for second opinions, both Mayo and MD Anderson sometimes will do a second opinion basically over the phone. If you check out their websites you can get the contact info. Generally you have to send them all current scans and bloodwork and then you have a phone consultation. Costs vary, but seem to be less that $2k. It might be worth checking out for you. It's something that you would have to pay for yourself, unless you have some private insurance that might cover it.

At this point it seems like you neither like nor trust your onc. That can be changed! Please talk to the Patient Advocate (that's what they're called here in Calgary - should be similar in Edmonton) and explain the situation, and demand a different onc. It might take a couple of weeks, but they really do understand that not all personalities mesh well, and that the mesh of patient/onc is crucial. If you have developed friendships with any of the nurses, then a couple of quiet conversations with them could get you the name of their favorite GI onc so that you can request them by name.

Hope the vent let you get some of your frustration out and that your mind is feeling a bit more clear now! I know that I need the outburst every now and again to get my brain clicking again.

Strongest thoughts as you figure out your next steps!

Laurie
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...

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

Re: Calling ALL Colorectal CANUCKS !

Postby triciah » Tue Mar 06, 2012 1:20 pm

Thanks for the replies,
I'm on heparin injections because of pulmonary embolisms found in Nov. 2010. Since then 2 more blood clots were found, 1 where my central line was and 1 in my heart. I asked my gp about the heparin 6 months ago and she wasn't comfortable doing the refill because she had no idea what the state of my blood clots were then. The ct scans last Sept and Oct only mentioned the one in my vena cava (??). My onc said in Dec that I should stay on it because I was obviously prone to clots. A friend of mine in another branch of health care said that the onc should have written a letter to my gp to transfer the prescription. I would be happy to quit giving myself a daily injection, I'm just not happy how it was handled (I know it's a really little thing).
Icegal, I've done pretty much all of it. I sent my stuff to both Mayo and MDAnderson. I was still in treatment when I sent it to Mayo and they had nothing else for me. At MD Anderson, they spent weeks going over my scans and reports. They wanted me to go down to Houston for a week of testing (for $20,000) before they would say if they could help me. I had already found a thoracic surgeon in San Antonio who said he could do rfa on my lung mets but my onc refused to do the out of country application because she said it wasn't "medically necessary". She was following the clinical guidelines. So there was no point in me going to MDAnderson because nothing they suggested would be deemed "medically necessary".
So I got to know the provincial clinical guidelines quite well. It was the basis of my first letter to the gastrointestinal tumour team. I basically challenged the guidelines, not my onc. The guidelines do not have room for "alternate" treatments. The head of the tumour team responded back to me with either lies or just his stupidity. He basically said anything beyond chemo was experimental and not licensed in Canada. I responded with proof of his errors. He hasn't gotten back to me, lol.
The only progress I have made in my dealings with the tumour team and my onc is that my onc now knows that rfa for lung mets DOES exist and is licensed and available in Edmonton. At my insistence, she met with the int. rad. here who does them. Little steps, little steps.
As for Phase 1 trials, I met with the Phase 1 doc a couple of weeks ago. He only had 1 for me and it is a trial for not 1 but 2 new drugs: MEK162 and RAF265 for patients with a RAS or BRAF mutation (I have an NRAS mutation). I asked him about other trials elsewhere including a specific one in LA but he just shrugged it off. I told him I was willing to travel for a good trial. I also asked him straight out, why would I do this instead of taking Xeloda and he had no answer. This doc also didn't bother to mention the clinical trial HAPPENING IN THIS CENTRE for radiosurgery using a brand newly licenced machine!
Anyway, I'm venting again. Ct scan today but I don't really have scanxiety except for the fact of not eating. This hospital didn't tell me only water (like at the cancer centre) so I will cheat with apple juice to try and keep my blood sugars more stable. I have found that people look at you funny when you are carrying a bag close to your mouth, lol.
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"

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

Re: Calling ALL Colorectal CANUCKS !

Postby smokeyjoe » Tue Mar 06, 2012 2:27 pm

My first meeting with my onc. after surgery he brought up clinical trials, he had already inquired about me going straight to a clinical trial, but because of my blood clots (I had one in each lung) I was ineligible....I have been thinking just because of that history of blood clots their view is I won't ever be eligible...but I'm gonna ask him if and when I go back on chemo. if one is available once Folfiri no longer works for me. My onc. has kept me on lovenox, his view is cancer can cause blood clots and so he's insisting I stay on it....I would prefer coumadin over giving myself the shots but he opposes this for some reason I don't know why.

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CRguy
Posts: 9453
Joined: Sun Feb 10, 2008 6:00 pm

Re: Direct Referrals to USA Cancer Centers

Postby CRguy » Sun Mar 11, 2012 3:56 pm

If anyone from Canada ( BC in particular ) has specific information about getting a direct referral to a major US Cancer Center ( MSK in particular ) would you be able to post a quick note to this topic ?

There is a recently diagnosed patient who wishes to explore all options for treatment, and would like any information which could be supplied. (the info may be general in nature, so you don't have to give exact doctor names etc.)
Just wanting to find out if we can help this person and their family, and check to see if the BC situation is different from triciah's Alberta experiences.

Thanks folks
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
10 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 » Mon Mar 12, 2012 6:29 pm

CRguy: I hope someone has information about direct referrals. That would be awesome!
smokeyjoe: I was also excluded from some trials because of blood clots. I also asked about coumadin (warfarin) and found out that it has a lot of interactions with other drugs as well as not allowed on many clinical trials.
Icegal: I looked into trials with regorafenib and found this:
http://clinicaltrials.gov/ct2/show/NCT01538680?term=regorafenib&recr=Open&rank=3
It's not in Canada yet but Canada is listed in the health authorities section so maybe soon! I found out that I have to discuss this with my regular onc, not the Phase 1 onc, so I'm waiting for a call back.

I got the results of my latest ct scan and it's not good. A 1cm "mass" found in the liver which excludes me from the laser lung surgery in the UK as well as several swollen lymph nodes in the lungs. So westie68, I'm like you, can't get 1 treated because of the other.
The other problem is, the experimental radiosurgery machine that I posted about earlier is apparently, no more. It was in a clinical trial but now isn't even operational. Haven't found out what happened with that.
I'm in pain now and haven't been about to get it managed yet so haven't done much in the last few weeks. I have an appointment at the cancer centre on Thursday to get it dealt with finally. It's been a maze for my family dr and I to figure out who I could get help from. She (my family doc) did start the process for home (and palliative) care. Home care nurse came on the weekend and was so nice and reassuring. Now I have someone to call when I get into trouble again so we don't feel so "alone" in this any more.

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"

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

Re: Calling ALL Colorectal CANUCKS !

Postby westie68 » Wed Mar 14, 2012 12:20 pm

Hi tricia: Some news. My oncologist here in London ON persuaded the Cancer Board that I needed the liver surgery to get to the peritoneum surgery. They approved it last week! I've already checked out the surgeon but haven't yet had an appointment. He does liver transplants so should be good. Your mass is smaller than mine (mine was last measured at about 2 cm) and if that is the only one you should fight for the surgery!!!!!! Please keep me posted.
Cheryl

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

Re: Calling ALL Colorectal CANUCKS !

Postby westie68 » Wed Mar 14, 2012 12:22 pm

Forgot this, Tricia. That liver mass not be a tumour. I had this trouble in all of the 15 or so scans I had. In the end I had to get a nuclear scan to see if it was an hemangioma or a tumour. As it didn't light up, it is determined to be a tumour. Any mass on the liver can be cancer or a cyst or an hemangioma or a calcium deposit or some fat. But CT scans seem to be better at determining what it is than an MRI.
Cheryl

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

Re: Calling ALL Colorectal CANUCKS !

Postby triciah » Thu Mar 15, 2012 12:04 pm

Westie68, that is great news! I'm so glad they're going to deal with your liver met.
I will probably send my stuff to the UK since the thing in my liver was identified as a "mass". I will have to really fight to get someone to look at the liver. But thank you for the hope!
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"

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

Re: Calling ALL Colorectal CANUCKS !

Postby westie68 » Sat Mar 17, 2012 10:16 pm

Good luck, Tricia!
Cheryl

luvinlife
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Joined: Sun Aug 29, 2010 1:24 am
Facebook Username: k pattenden

Re: Calling ALL Colorectal CANUCKS !

Postby luvinlife » Sun Mar 18, 2012 9:02 pm

Hi my fellow Canucks! I've been a member for about 2 years but this is my first post..lol. I was really happy to see this thread when I popped in for a visit the other day! It's nice to share information about CC treatments available in Canada.

CRguy, your post about referrals to the US caught my attention. I'm in BC too :) The only way I know of doing this is to have your oncologist write a request for a referral to the BC Cancer Agency for payment. My oncologist and I have had a few discussions about this. He's American and knows what/where to go if and when I run out of options here. This is basically the same process that our MD's have to go through with the provincial government when requesting treatment that is not available in Canada. Basically, your Dr. needs to be extremely good at writing these requests and providing the reasons for the referral. It can be done and is done, although not very often.

I have a very close friend who is a Pediatrician in Calgary that has managed to get the Alberta government to pay for cancer treatments in the US for some of her patients. She says it all boils down to how well the request is written, (keeping in mind that all available treatments in Canada have been exhausted).

The longer I'm around and "in the system" the more I see how much depends on who your Dr.'s are and whether or not they have pull with BC Cancer. There are definitely a few that do. I was actually referred to an onc in Vancouver who sits on a few boards and is in charge of clinical trials for CC. She told me that when I was at the point of needing to look at clinical trials, she could have me on some in Vancouver or in other countries (what is available at the time). It's possible to participate in a clinical trial from another country and stay home. You are looked after here and all the data is sent away to the agency conducting the trial.

So, if I was looking to go to the US and didn't have my onc, I would get myself an onc who sits on boards and is actively involved in UBC research. They seem to have the most connections.

:)

DX Stage 4 CC Sept 2008 (mets to liver and lungs)

User avatar
CRguy
Posts: 9453
Joined: Sun Feb 10, 2008 6:00 pm

Re: Calling ALL Colorectal CANUCKS !

Postby CRguy » Mon Mar 19, 2012 1:00 am

Thanks for that info and insight. Would you be willing to share more info in a PM or email off the forum ??? ( i.e. a Doc's name.. ????? ) I suspect a few BCCA Oncs would fit your criteria, but would be very appreciative of specific info and I would keep the source (you) confidential if you choose to share.

Many thanks, and I am glad this topic is finding an audience for us here, North of 49 !

Cheers and continued success on your own Journey
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
10 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 » Wed Mar 21, 2012 12:09 pm

A couple of things... first, my last letter to the head GI onc got filed in my big file and apparently, many have read it. A visiting doctor from Spain asked my permission to copy it and the research I did for it. My nurse said that they were all impressed with it.I was tickled pink. I don't know if anything will come from it yet but it's nice to know I didn't just piss off a bunch of health care workers.
Secondly, I'm moving into the area of palliative radiotherapy and I want to have my info before going to it. So SBRT for lung mets is available in BC, right? Also, I know cyberknife is available in Hamilton and Ottawa but I haven't been ably to find out if it can be used for lung mets. I was told by an int.rad, that he could do rfa on bone mets for pain relief. Any one else heard of this?
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"


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