Any other Stage IVs in Ontario, Canada?

[Wendy]

Hi, I am new to the Colon Club. I am a 40 year old female diagnosed (Jan 2006) with Stage IV with mets to my liver. I am looking for any others with the same diagnosis in Ontario - to share information with. For example Avastin is not covered under our provincial drug plan, or most private drug plans - what options are there to get the drug? I have been spending alot of time researching procedures and drugs and since I am in Canada, where treatment and coverage seems to be more conservative if not delayed, I find that I have to be the one that suggests things to my Oncologist.

Let me know if any of you are out there!

Wendy

[Guest]

Hi Wendy: I'm from Ontario - stage III 2xlymph nodes. I was offered oxiliplatin(sp?) which is not aproved for use in Canada. I had to sign a document giving my financial situation and it was paid for--- didn't cost me anything. I don't know if there is a way to get Avastin but it is worth asking for it.

I know what you mean about health care in Canada. The whole system is so "government/money" run that I feel that we do not get the best tratment unless we start yelling and causing a big fuss...we have to "fight" for everything

e.g. I want a PET scan when I finish my treatment -- There is a machine in Quebec but I'll have to pay........why?????

[Adam]

Hi Wendy,

I'm a 30 yr old male Toronto and diagnosed last month with stage 4 colon cancer with many mets in the liver. I too am frustrated with our options here in Ontario to treat or cure this horrible thing. I have found a doctor in Houston, TX that is the only guy that is willing to give a pretty aggressive shot at it with combined chemo and surgery procedure. I am now on the "ontario isssued" f u5, oxaliplatin to stabilize the desease and will travel down to Texas for the surgery. I would also like to mention that I am following the footsteps of another 40 yr old male who was in my shoes a year and a half ago. He now iforms me that he has been cancer free for 14 months after his surgery at MD Anderson in Houston. I'm using that as my insparation since he too was told by the Canadian system that he only had a few months to live. please contact me for more details. adamski007@hotmail.com

[guest]

Anyone who needs information on MD Anderson-I just spoke to Adam.He has been very helpful and free with the information he has.What a nice gentleman to speak with-thank you so much again Adam. I went to my son immediately with your information.Our very best wishes! Thelma

[guest]

thelma: can you please share the info. Adam is willing to give info on the telephone but it just in not feasible for me to 'phone him.

thank you

[guest]

Hi, If you want to post your email so I can get back to you I will share the info.It really was worth the call and Adam was delightful to chat with! Thanks! Thelma

[TheresaM]

Hi Wendy:

I was diagnosed in May/05 with stage 1V CC. Had bowel resection- ascending and 3/4 of transverse colon removed- along with left ovary , with 10/15 lymph node involvement. Went through the 12 Folfori chemo treatments. Now have 5 cm. tumour just below the right ovary and several small lesions. Feeling great . Hard to imagine this is all going on. Thank God for CT scans.

Will begin oxiliplatin April 10th. So nice to see others from Ontario on this site. But you're right. everything in Ontario is very political. By the way, I live in Chatham Ontario where there seems to be an influx of this horrible disease.

Will be nice to hear from others.

Theresa

Theresa.

[Wendy]

Just want others in Ontario to know that there is a way to get Avastin if you are willing to travel to Buffalo, NY (not sure about other US states). If you are interested in finding out how to go about it - let me know.

Wendy