Can't get any funding for Avastin . . . . . what the 'F' am I supposed to do now?!?!?!

maglets said:

hi yoga
ohh I am so sorry you are having to fight this battle for drugs....as if you need the strees.

It seems sometimes to me that the breast ladies are doing a better job than we are....get those brown tshirts made up...

my onc will actually lie for me for funding.....and one time when she wanted xeloda she got me on with servies with CCAC and they picked up the funding. Any chance you could talk to the oncologial pharmacist at your hospital....they are very knowlegable about pulling ropes and what is funded how by who.

mags

smokeyjoe said:

Tans...what are the
Tans...what are the off-label combos of natural and generic medicine that could fill the gap for Avastin?? Thanks

th_in_canada said:

cimetidine
Is cimetidine available without a prescription in the US? It's not in Canada (at least not in Alberta). I'm heading to the States in January so I was hoping to pick up some then.
Where does one get tegafur? It's not listed on our colon cancer drug guidelines.

westie66 said:

Paying for chemo treatments
Hi Yoga and others: I am also CAnadian and live in Ontario. Although I don't have colon cancer, I do have gallbladder cancer, which is very rare (I think there may be 6 of us with it - still alive - in Canada at the moment). Anyways, I had 12 treatments of cisplatin-gemcitibine from September 2010 to March 2011. No costs to me involved. It didn't really work for the cancerous nodules (6 of them) on my peritoneum resulting from the gallbladder cancer (which was removed with surgery April 2010). Since May 2011 I have been on oxaliplatin + irenotecan + 5FU pump for 42 hrs + leucovin. Unfortunately as I don't have colon cancer, I have to pay for the oxaliplatin as Cancer Care Ontario nor my private insurance plan covers it. I also have to pay for the irenotecan but get 85% back from my insurance plan (it isn't covered by Cancer Care Ontario either). As well, I have to pay $100/hr for chair time even though 5FU and leucovin are covered - as long as there is 1 private paid for chemical, you pay for chair time. The Trillium fund wouldn't cover any of it. I have had 12 treatments and have shelled out about $12,000 if not more which I had to take from my retirement fund (I am retired). The cancer centre in London has a plans coordinator and we fought both my employer and my private insurance company (ManuLife) to have the oxaliplatin covered and they said as long as it was being administered in a hospital setting that it was the job of Cancer Care Ontario to cover it. It was only approved in 2009 and Cancer Care Ontario won't fund it for non-colon cancer patients. Hopefully I'll get some money back on my income tax!
However, the good news is that the oxaliplatin appears to be working on the peritoneum nodules as they haven't grown, there are no new ones, and 1 or 2 have even shrunk. So maybe it was worth the loss in my retirement monies. Maybe.
I did check which provinces covered it and only British Columbia does - that province covers pretty much most of the chemo treatment drugs. Saskatchewan and the Maritime Provinces were the worst in coverage.
Re surgeries not being done in Ontario - OHIP will cover some surgeries in the States if they aren't available here like the HIPEC surgery.
Re breast cancer. Yup, apparently the breast cancer survivors are doing the right thing - campaigning for more research funding. They are doing a good job too! More power to them. Something we should do too.
On a happier note, here in Ontario we don't pay for OHIP as they do in other provinces (my brother pays over $2500/yr for him and his wife) and just about everything else is covered. I think with cancer, it seems to be the new drugs that take awhile to get covered. Letters to our MPs, etc. would be a very good idea.
Re cimetidine. Your doctor might write you a prescription for it which would be cheaper than buying it in the States I would think (I don't pay for prescriptions as I'm over 65 and my plan would cover them if I wasn't).
Cheryl

tanstaafl said:

where
UFT is Uracil-Tegafur (coded FT) also Taiho's brand name, works much better than tegafur alone. Apparently UFT is not available in Canada either then, it is in UK, Europe, SoAm, Asia. Taiho in Japan is the original mfr, inexpensive generics are made in India, So Korea, China and Taiwan, distributed throughout Asia. Bristol Meyers Squibb or Merck KGA in Europe. You would have to make sure you get UFT and not just tegafur pills, they are under lots of brand names.

We use UFT daily with PSK (a specific mushroom extract, a US packaged clone actually), and don't use UFT off and on like most trials. UFT wears down the white blood cells (WBC) but the Japanese figured out PSK to keep the WBC, RBC and platelets up (One oncologist cited the erosion but didn't know about PSK. So much for expertise.). Xeloda may kill nodes better, CIM-UFT-LV (low dose LV for wife's stage IV) with PSK looks like better daily coverage for circulating cells spreading - we aim to contain, stop new mets, and then cut any old nodes out that grow, so oncologists will be underwhelmed. Even though my wife exceeds their prognoses in all ways (and uses a lot more targeted supplements). Life Extension Foundation, LEF.org, advocates the supplements with PSK and cimetidine without the UFT (or Xeloda, or 5FU).

I am slightly aware of US Customs importation rules from 2 years ago but Canada is a whole new ball game and the other part is who would oversee UFT, etc, your inexperienced Canadian doctors? Online doctors, maybe Asian? (We used two+ doctors + "supplemental" advice to integrate it ourselves)

I asked about chemo maintenance arrangements in Canada because Xeloda is what's available and then one could concentrate on things like cimetidine, targeted supplements and TCM. This is complementary or integrative medicine.

Without chemo maintenance, you're "alternative" if using cimetidine, targeted supplements and/or TCM alone. We hope to be alternative someday.

Without available surgical backup at home (slow, expensive or permission based), one becomes a medical tourist.

CherylHutch said:

The differences
Hi Cheryl and my fellow Canadians,

When I first heard that there were major differences when it came to cancer treatment funding among the provinces, I was shocked. I think the first time I hear this was here on the CSN Board. I forget what the topic was but it was one of the treatments (it could have been Avistan) and how those living in Ontario had to pay for it out of pocket. Ontario is a huge province, and one of our richest, so it shocked me that those living in Ontario were not getting the same funding as those of us living in say, BC. I have since learned it's even worse than which province you live in... it could be the area of the province!

Yes, Canada has a National Healthcare system where the rule is, "affordable healthcare" is available to all Canadians. The Feds contribute a huge portion of the money for this system and they give it to each province. It is up to the province to then manage the healthcare system for their province. Obviously, the amount they get from the Feds does not support each province 100%, so it's up to each province to figure out how they are going to make up the difference and what exactly their own provincial plan will cover. So, you then have where some provinces (BC being one of them) charge monthly premiums... of which, for a lot of people their employer covers as an employee benefit. If you do have to pay your own (IE: self-employed), the monthly premiums are very reasonable in comparison with private insurance. Just off the top of my head, for a single person, the monthly premiums were $54/month (not sure if they have recently gone up). I took early retirement because I had my years of service when I was 55, so as a fully pensioned retiree, I now pay my own medical since I'm not employed, but because I'm a retiree, I get it for $22/month. THAT is what they mean by affordable medical... where you are not going to go broke paying the monthly medical insurance premiums. Now, what you get for that will vary from province to province.

I'm sure that BC Medical and Ontario Medical are probably fairly similar in what they cover. BC Medical covers very few, if any, chemo drugs. But the reason for that is because the BC Cancer Agency covers them. Now whether BC Medical gives the Cancer Agency money to subsidize the cost, I'm not sure... but I do know BC Medical is not billed for any of my chemo treatments, or any treatment (scans, blood work, IV hydration, etc) that is done at the Cancer Agency. If I end up in the hospital for any reason, then anything done at the hospital, or doctors visits, etc. are all covered by BC Medical. Confusing, no?

The only problem I've ever had, and it wasn't really my problem, but was frustrating nonetheless, was when I was on the 5FU/Oxy and I had to start my radiation treatments. My Onc was concerned that it was going to be too much to do the FOLFOX while I was also having daily radiation... so she wanted to switch me to Xeloda while I was getting the radiation treatments. The Cancer Agency turned down the funding since as far as they were concerned I could have the FOLFOX (which is cheaper than Xeloda) and BC Med refused to pay because either treatment was a chemo and was to be covered by the Cancer Agency. I can't remember all the details because my oncologist was the one who dealt with all of this, including my Extended Health (insurance) and I think it was my Extended Health that ended up covering the Xeloda rather than me having do do the FOLFOX while going through radiation.

But others can attest to it's where you live that can make the difference. I go to the BC Cancer Agency here in Vancouver and so far, I have not had to pay for anything... cancer treatments or any medical procedure. I hadn't even heard about "chair fees" until you mentioned it in your post, Cheryl. Yet, I go every two weeks and sit in one of the chemo chairs for 4-5 hours every two weeks. Yikes! That would be $400 - $500 just to sit, if I had to pay that! Others have said that their oncologist can only order so many treatments of certain drugs that will get paid for... whereas my oncologist has told me if a treatment/drug is working for me, then I will get it for as long as it is still working.

I think it all boils down to WHO is paying for cancer treatments and for most provinces, it's not their provincial medical plan that is paying them. Whether it's private funding, or funding through the Provincial Cancer Agencies... and then just how much they can cover depends on the fundraising that is done in a particular province. I would think that the smaller provinces would have the most problems and least coverage... but it surprises me to hear Ontario has so many limitations. And it certainly doesn't help anyone, no matter where you live to know that where you live the funding is not available, but if you were to move to another province, the funding for that particular treatment is available. That just seems so wrong in this country of ours, but I swear if one were to dig it all comes down to politics

Cheryl in Vancouver