raye
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Thanks for posting this Marion. I’ve read some other articles concerning ‘building’ organs for transplant, but not this one. What an exciting option for liver patients if it came to fruition.
I had the very much the same experience with oncologists and others with different opinions. From my own experience as a transplant CC patient, I can tell you there somehow is a disconnect in the cancer community between oncologists and surgeons. My wife and I found it baffling that each specialty had absolutely no idea what the other was up to and what treatments that were available from each profession. Except when we found the Mayo CC protocol for liver transplant. (Insert smile here….)
Has anyone else seen this or experienced this?
Hope works the best. Just be stubborn about beating cancer and take one day at a time.
sshamilton wrote:Oh yeah – Thank Raye! I sent your info on to my friend Tanya so she can reach out with you directly given the is leading the charge!.I’m travelling through the U.S. for another 4 days before I arrive back home in Ontario. My phone is on 24/7. 1-269-598-1861.
sshamilton wrote:Thank you – I will look everywhere I can.One strategy I had was to find a “survivor” and work backwards. Unfortunately there do not seem to be any. This is very discouraging but it is also important that we gain an understanding of “reality”. I am so sorry for your loss, I lost my mom to breast cancer, so I know the pain it causes – it wouldbe nice if mygirlfriend could be spared this feeling.
I’m here. I’m your survivor. Phone me or e-mail me.
269-598-1861
Raye
Rick,
Hang in there. I had some pains that were similar along the way and they were minor infections from my stenting problems.
I, like Leo, also had kidney stones. What a nuisance those were.
Helen,
I’ll have some time next week and I’ll put some effort into getting a figure for you for the last 17 years.
Well done Rick. That Marion sure is persuasive isn’t she? LOL Thanks to both of you to have this link available. Let me add, even if you’re just curious about transplant please feel free to ask questions. It helps to get this message out there just as much.
Raye
Dianne,
Marion and I will be talking by phone tonight. Skype sounds good, but we’ll need to get those on board who’d like to use the service.
We’ll talk about my experience with Cdn Cancer Society. It was frustration at the local level, not nationally that I had problems.
I look forward to your e-mail.
Raye
Dianne,
We need to talk and discuss this idea. Unfortunately I’ve been sitting on my hands on this idea myself, always using the excuse I’m too busy. Its time to get busy.
I have website experience as I do sites for various clubs in Canada and the U.S. on a gratis basis. Soon I will be back home in Ontario since my contract here in Montana will be coming to a close by April 27th. I expect to be back home for a week before returning to Indiana for contract work. Being closer to home makes it convenient to personally discuss things with you and others.
Nothing is inhibiting us from making plans though, so we need to have some feedback and discussion from Marion and others on how to approach this. Taking this step in a great idea, but you can’t let it be too overwhelming as it becomes a burden rather than a labour of love. I’m speaking from experience.
E-mail me and I’ll give you my number. We can start our discussion. How’s that Marion??
Quite simply my tumor grew in an unusual manner. Instead of growing from the inner lining of the bile duct outward, it grew from the outside inward. In essence it provided more pressure right at the bifurcation of the ducts and closed off quite rapidly compared to other K tumors. I almost instantly went from normal functions one day to light bulb yellow skin , pale stools, and coca-cola urine in 24 hours. It wasn’t a slow process that you could observe changing every day. It was Boom!! I received a biopsy brushing within two weeks, which is good in Canada ( ha ha ) and got down to business with treatment options within 5 weeks. I got to the Mayo clinic for my evaluation when the tumor was only 1.5 cm square. I believe that was the key factor in my success was the early diagnosis and treatment. I asked a surgeon back at my specialist’s hospital who knew someone in the Liver Transplant clinic at the Mayo who was also a Canadian doctor, and Helen and I headed for Minnesota as soon as possible for the evaluation. I DID NOT wait for my government health plan authorization to send me and fund the evaluation. I paid for it myself. That was another thing that worked in my favor, I went on my own accord. I didn’t wait and waste precious time.
In all fairness to social medicine, when I was admitted to the Mayo protocol my government health system agreed to send me since this procedure and surgery was not available at that time in Canada due to the shortage of donor livers. But, the government plan arranged the funding with the Mayo and handled my plans with the Mayo Clinic. All went well with their efforts.
One of these days, and soon, I intend to compose an article on my CC so all can read, and it won’t be sugar coated. People need to know what we go through with this GI cancer. It ain’t nice.
Diane,
I’ve had little to no luck with making the Canadian Cancer Society over the last two years aware of our disease. I have thoughts on this and have been driven to the point of disappointment with my local society’s thoughts on how I can help them. I won’t get into that as it infuriates me to even get started talking about it. I hope others here on the forum have had better luck with their local cancer society. I certainly haven’t. I sound like sour grapes, so be it.
