Thursday, September 17, 2009

Last Night's KCC Meeting

Sooooooo...did any of you get the opportunity to tune in? Karen, I know u were there and your participation was appreciated by the group.....great work my dear. Let me know how things went.

The first part was a little over my head as it spoke of the concept of the genetic aspects of kidney cancer and the possibilities of whether it can be passed onto your families, is it hereditary or does it just happen which is referred to as the cancer cells being "somatic" and are NOT passed on. The likelihood of it being hereditary is very small.

The main thread that I took from the presentation was the statement that researchers now think that kidney cancer has something to do with the immune system NOT working properly.

Past treatments for kidney cancer patients have consisted of biological agents to enhance the immune system such as Interferon and/or Interleukin 2, clinical trials or even no treatment at all.

With our present new era of targeted therapies, now the medical approach is much different. These new therapies try to shut off the signals that tell cancer cells to grow.

There have been major advances in the treatment of RCC during the past 2 years alone and there are newer treatments being tested in clinical trials.....who knows when the next great inhibitor for RCC will appear. Getting it approved is a very big barrier in treating patients, so it is up to each and everyone of us to let our voices be heard throughout the government departments of health to bring awareness of these newer treatments and the fact that many terminal patients need them NOW, not months away!!!

KCC have created pre-paid postage cards addressed to the Honorable David Caplan - Minister of Health and Long-Term Care for those of us who may be interested in forwarding to address our concerns with regards to Kidney Cancer and the approval of new treatments and the funding of these treatments for those patients who need them most. Please contact KCC to obtain these cards and pass them along to family and friends for their submission as well.....there is strength in numbers and together we can ALL make changes happen.

One more note from last night's seminar is that the 8th International Kidney Cancer Symposium will be held in Chicago, IL from September 25-26.
One of last night's presenters at the seminar, who is an RCC specialist herself said that patients should NEVER BE AFRAID TO LOOK FOR THINGS THEMSELVES and not always leave it up to their doctors to find what's available.....that is excellent advice!!!


Jane Thompson said...

Its so good for us over here in the UK to read about the research thats going on over there in Canada and the US into kidney cancer. We are a long way behind you both as you know - but running fast to catch up !
And still fighting here also to gain access to the new targeted therapies which have made such a difference to the treatment of this disease.
We are a small voice but we are getting louder day by day !!

Anonymous said...

Hi Deb,
I did tune in last year & I did find the first part over my head also.
I would love for my oncologist to do a talk. I'm going to have to bug him my next visit in November I think.
Take care & I will reply to your e-mail soon.

Anonymous said...

Whoops, meant to say last night. "Chemo" brain.

karen in ottawa canada said...

Deb - not sure if you're aware - the pre-paid KCC postcards are addressed to Ontario's Minister of Health, Hr. David Caplan, to ramp up the need for funding of Torisel in Ontario. My understanding is that KCC will be doing a similar campaign for other provinces at some point. I think the Ontario push is on right now as KCC executive have an opportunity to meet with Mr. Caplan in the near future.
And I agree - my doc - Dr. Reaume - spoke very well about the genetic aspects of RCC, but it was detailed and complicated - I will have to list to the archived webcast a few more times before it becomes clear for me! But it was a great evening with a bunch of very dedicated people - we are blessed to have them on our side!

Dennis Pyritz, RN said...

I write my blog, Being cancer, networking people transformed by cancer, partly in order to nurture and support our cancer blogging community. I am working on a new project that I am very excited about. I am writing a book about the cancer blogging phenomenon - its scope, aspirations, and reasons for being. I plan to highlight some of the best writing from our blogging community.
As you probably know, your own blog is listed on my blogroll, Cancer Blog Links. I am hoping to get your preliminary permission to use some of your material in the book. I will, of course, give full credit as well as link information. I would also like to arrange for all contributors to receive complimentary copies.
I have not yet secured a publishing contract. But I want to get started compiling some chapters prior to submitting my proposal to a publisher. So if this sounds like something you might be interested in being a part of, please contact me by email. I will be able to tell you the specific posts I am interested in. Please include off-blog contact information.

Dennis W. Pyritz, RN, BA, BSN