Why a blog for Kidney Cancer Canada?

Hi everyone,

Deb Maskens here. As some of you may know, I have recently taken over the role of Chair of KCC. One of the thoughts I’ve had is to begin a blog for sharing some of the day to day issues that affect kidney cancer patients in Canada.

I’ll start with an example:

If you live in Ontario and have rcc (clear cell), up until recently the Ontario Government would fund HD-IL2 treatments in Buffalo. From southern Ontario, patients were sent to Roswell Park in Buffalo because this treatment is not offered anywhere in Ontario.

All of that changed without notice. As of April 2010, the Ontario Government is no longer funding HD-IL2 treatments in Buffalo. How did we find out? When the first patient was denied. That patient was considered an ideal candidate for HD-IL2, and indeed for those screened and ideal candidates, that treatment can offer the only hope of a complete cure from advanced mrcc.

Patients in Quebec can access HD-IL2 at the Jewish General. Patients in Alberta can go to the Cross Cancer Centre. So what happened in Ontario? It seems that the Ministry of Health and Longterm Care is looking very carefully at what it does and doesn’t fund… and this was one place to cut.

Stay tuned on this issue. We are working with the patient to provide him with the most up to date information on HD-IL2 and hope that the Ministry will overturn its denial. If it doesn’t, we will have to fight this decision on behalf of those patients who could truly benefit from this option and will be denied unless we act.

Would be great to hear from patients who have experienced HD-IL2 — why they chose that option and how they would feel about having the option taken away. I know that our patient Don U. in Montreal is completely clear of disease… and wouldn’t be if not for this treatment.

Onwards! Deb

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3 thoughts on “Why a blog for Kidney Cancer Canada?

  1. I am a rcc IL 2 survivor. I was treated at the Cross Cancer Institute in Edmonton. I did not achieve a complete response, but I did receive a partial response and the tumors in my lungs and bones have become stable. I am happy with my quality of life.

    Without adaquate coverage for this treatment, or access within province, I would have lost hope. When the government takes away your ability to heal or get better, it is frustrating.

    If my cancer becomes active again, I’m not sure how much my insurance will cover. But, I do know that I am happy to be here today, and the IL 2 trweatment was a big part of the process. I am sure that without the treatment, I would not be here today.

    James

  2. I’m new to this blog but would like share some information that has been very helpful to me. I am on 50mg sutent for metastatic papillary rcc. What was suggested to me by Dr. Bjarnson of Sunnybrook Hospital was to do 2 week on meds 1 week off.
    He has found this works very well for his patients. Happily for me this as been very helpful with side effects. I hope this information can help any fellow sutent patients

    Good Luck to All
    Annie

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