Marion,

Helen and I were down to London to see my GI surgeon and it was decided to immediately have surgery for my stomach problems. I'll be admitted tomorrow afternoon and have the surgery Sunday. Hopefully this should fix my problems. My digestive system has completely shut down finally and this needs to be done ASAP.

The doctor figures that the passage to the intestine is blocked by radiation damage during the treatment for the bile duct cancer tumor that was treated. Life is good. Time to heal.

I've had a blockage problem at the exit from the stomach to the intestine ever since the transplant was done. It steadily grew a little worse each month until it finally became unbearable, and to the point where a gastric bypass that entails a loop of intestine from the stomach to the intestine needs to be built. The liver and the pancreas need to be re-aligned also so its not an easy task. Finally I'll get the relief I require from this little nightmare!

I'll see you in a few weeks.

Raye

Raye here.

I had the Mayo transplant protocol performed in Rochester MN and I'm almost 3 years out from the surgery and doing fine so far. If it was not for the live donor transplant graciously provided by my oldest daughter Jennifer I have my doubts I would be here today. It was very close for my survival up to surgery since I constantly battled malnutrition and jaundice 24/7, and there was practically 'nothing' left of any muscle mass on my body because of this.

The live donor transplant got me back on track within two weeks and I've been great ever since, even though the malnutrition effects impeded me for some time after the operation. But I'm here and I consider myself very fortunate.

The live donor transplant has been used for CC at the UBC hospital in Vancouver and recently a live donor was accomplished at McGill University Hospital in Montreal. These are a great leap from when I was diagnosed in my province of Ontario 4 years ago where I was denied the operation and a live donor. Only through our efforts here at home and through applications to our health system in Ontario did we get the opportunity and the funding to go to the Mayo Clinic in Rochester MN.

The lack of donations for transplants is very low here in Canada and I don't know why with the advertising the government and hospitals provide.

Live donor permission may be the only way to go for any type of transplants in Canada when the governments and medical associations change their outlook on helping transplant patients.

Merry Christmas everybody!!

Marion,

I'll poke around on the web and see what I come up with. The closest care to NB would be McGill University Hospital in Montreal. That is an excellent hospital that has the expertise for CC patients.

Tommy,

Where is the CC located so we can help you and your Dad better. Somebody told me I had no hope with my CC. Rubbish. I'm here because I refused to believe their verdict.

Thats the reason your Dad is still hanging in there.

5

(1 replies, posted in Chemotherapy)

Money blocks the way again. Thats a real problem in socialist medical systems is that budgets are always at the mercy of bureaucrats in more ways than you can count. The same problems occur here in Canada and we could discuss this all night long and argue the merits of social medicine and private medicine.

I'm a Canadian and I was treated at the Mayo Clinic in the U.S. It was there that my health care system of my province did fund my CC and liver transplant costs. Unfortunately I saw many U.S. patients struggle with their private insurers to the point of tears.

Its 6 of one and half dozen of the other about government and private health care systems.

Raye

Epato,

The Charite' hospital system in Berlin follows the Mayo protocol. A friend in Toronto I've dealt with had her German friend placed in their care and he is now a one year CC transplant survivor.

Here is the link for info.

Raye

http://www.charite.de/en/international/

7

(2 replies, posted in In Remembrance)

Melanie Lodge of Toronto Ontario passed away peacefully on Nov.2, 2010 after a long and courageous battle with CC for many, many months. I extend the sympathy for everyone on this site to her family and friends.

I knew Melanie from our telphone conversations about CC and following her on her very active Facebook page.

You're at peace now Melanie. God be with you and your family always.

I'm a Klatskin tumor survivor. Diagnosed Dec.10 2006, my 54th birthday, and entered the Mayo Clinic's liver transplant protocol in April of 2007. The protocol worked its magic with many episodes of dropping red blood cell counts , blocked j-tubes and bad jaundice, repeating cholangiograms, angiogram, teeth pulling, cracked vertabrae, 1/2 body weight loss, radiation, chemo, etc.etc. and finally the transplant itself on Helen and my 32nd wedding anniversary,March 20, 2008.

My eldest daughter Jennifer was my live donor donating 60% of her lver on the day of the transplant. She's my savior and we all love her very much.

I'm in remission today over 2-1/2 years later. Looking forward to the 5 year remission mark as my gift of life. After that its all a gift.

9

(9 replies, posted in Introductions!)

Tom,

I've sent you an e-mail.

Raye

I will support Ashleys observation re: transplant. I am a Klatskin tumor / CC survivor now for over 2-1/2 years. I was probably one of the best candidates the Mayo had for the liver transplant protocol.

I am more than glad to hear that you have persued the transplant agressively. That was exactly what my wife and I did when I became a CC patient. Fortunately I was a 'perfect candidate' if there ever was one for the liver transplant protocol.

Good luck and keep pushing forward.

Raye

11

(7 replies, posted in General Discussion)

Just GO Rick. GO!!!

12

(32 replies, posted in Introductions!)

sallypa,

My only advice is to continue on the course you are on. Never take a negative opinion. Never give up. I didn't and I'm still here.

Good luck and prayers for all of you.

This is a known risk, but a low risk, to the donor when participating in a live donor transplant procedure.

I can assure you the hospitals take more than just precautions when candidates are finally selected for this surgery. My oldest daughter Jennifer was my live donor and she went through the identical battery of tests I did when I was testing for entry to the Mayo transplant program.

Thank you for the post Marion. Now we have another center for transplant. For those in Canada, University of British Columbia Medical Centre is providing liver transplant for CC, McGill University Hospital in Montreal, and apparently over the last year or so the Toronto General Hospital system along with Princess Margaret Hospital has provided several transplants.

15

(80 replies, posted in General Discussion)

Keep strong Rick and rest up. That radiation sure can put you to sleep. Falling asleep in church is okay too. God knows what you're treatment is. LOL

I thought I'd plant a link here for the Mayo Clinic transplant protocol, the same protocol I underwent for my liver transplant in 2008.

There is hope for CC, whether its a transplant or other forms of treatment. I'm still here and doing well after 2-1/2 years into remission.

Please e-mail me if you have any questions. I'm on 24/7.

PS  Someday Marion I will get my story written. LOL

http://www.mayoclinic.org/bile-duct-cancer/

Marion, I enjoyed myself greatly travelling back home the long way to Canada ( Idaho, Nevada, Utah, Colorado, Death Valley, Grand Canyon, Arches National Park, etc.etc.) Kansas. What a nice bit of country the western states are, and such vivid and unusual terrain. All the little flowers in Death Valley in bloom during the spring are so beautiful, and the sunsets out west are just beyond words.

I'm so happy to be here for all that I was given during my trip home.

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.

My thoughts and prayers are with you and your family Dianne.

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.

21

(10 replies, posted in General Discussion)

Good for you clkempf!

Just e-mail each other in Croatian. That would be cool!!

23

(21 replies, posted in Introductions!)

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.

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(21 replies, posted in Introductions!)

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

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(16 replies, posted in General Discussion)

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.