January 22, 2014 at 11:22 pm #78365darlaParticipant
Lisa, You have a great attitude. I like the way you think. I’m sure that, along with your healthy life style will definitely benefit you in fighting this disease.
Hoping for the best for you.
Love & Hugs,
DarlaJanuary 22, 2014 at 10:23 pm #78364lisasParticipant
I think I fall in the random category. I ate very very little in the way of processed foods or sugar, had no risk factors, exercised a lot and had no health issues whatsoever. In fact, right up to the week my eyeballs turned yellow, I felt like I was in the best shape of my life.
So, go figure.
My takeaway is that eating well and exercising have given me the ability to be in better shape to fight this invasion as long as I can.
LisaJanuary 22, 2014 at 10:15 pm #78363jscottMember
Regarding diet and lifestyle changes —
Well, this is just my opinion, but here goes…
I think it is incredibly easy to be fooled by randomness. A good illustration from finance is the “stock picking newsletter” scam.
That scam goes like this.
Pick 1000 people and send them a “free stock pick of the month.” The scam part involves sending each one of the 1000 people a DIFFERENT stock pick.
For illustration, assume half the stocks go up after 1 month and half go down. At this point, there are 500 people that got a “winning” stock pick from me the first month. Take that group of 500 and send them another “free stock pick of the month.” Again, send all 500 a different stock pick. After another month goes by, do the same thing to the 250 that have now got two “winning” picks in a row.
Now, after 3 months, there will on average be 125 people that have, for three straight months(!), gotten a stock pick that has turned out to be a good pick. To this 125 people you send them a special offer to subscribe to your newsletter for the introductory price of $10,000 or some such nonsense.
Anyway, the idea is that the people receiving the stock picks only see the picks made for them (not the picks made to other people). By shear random chance, a good fraction of them will see a sequence of good picks and will be inclined to buy the newsletter. That is the stock picking newsletter scam.
In medicine, the same issue arrises. It is not at all a scam, but rather the issue is that each patient mostly only sees what is happening to them. For example, suppose 10 cancer patients add a “no sugar” rule to their diet. Perhaps one of those 10 has a very good response to treatment. It would be very natural for that patient to attribute some of the good response to the “no sugar” regime.
Similarly, 10 patients might decide to add lots of exercise (or olive oil, or anything really), and again perhaps 1 has a strong positive response. This person is likely to suspect that exercise played a role in their response.
Now it could just be that one in 10 patients have a strong response by shear chance alone (even if they don’t make any major lifestyle changes).
How to combat randomness? In my opinion, the best way we have to guard against getting fooled by randomness is the clinical trial.
While it could be that certain diet changes have an effect on cancer outcomes, it may not. Just as the people receiving the newsletters could be fooled by randomness, so can cancer patients.
For me, the take away is to try and be healthy, but don’t do things that seriously negatively impact quality of life unless there is good supportive evidence.
I also believe that participating in a clinical trial plays an incredibly important part in trying to improve patient treatments. Without clinical trials, randomness can slow down treatment innovation to a crawl.
Again just my take on things.
JasonJanuary 22, 2014 at 8:32 pm #78362darlaParticipant
I have to agree with the others. In my case I’m the sugar addict and also got worse after Jim passed. He was a much healthier eater than I and he is the one who ends up with this cancer. At one point I tried to blame it on cholesterol meds. In my mind I felt that triggered and accelerated the cancer. Still really believe in the liver flukes theory, but many with this disease were never exposed to that either. At this point I think the verdict is still out on what causes CC. Sometimes I think it is just the luck of the draw and it is what it is.
Please do not place blame on what you did or didn’t do. This was not your fault.
Love & Hugs,
DarlaJanuary 22, 2014 at 7:34 pm #78361kris00jParticipant
I agree that there’s no known reason for getting cc. BUT I agree that sugar is bad! I believe cancer cells feed on sugar and some other processed foods. So, while I don’t believe sugar CAUSES cancer, I believe my sweet tooth helped it grow.January 22, 2014 at 6:59 pm #78360lainyParticipant
Pat, I agree with Marion. My Dad had a Candy store downtown Kansas City and he loved his candy his whole life. Lived to be 93 with no diseases at all. He actually played Tennis until he was 85! I on the other hand ate little candy, don’t even care for chocolate, lactose intolerant and I get Diabetes! Go know. Like one Doctor said a few years ago it seems to just be the luck of the draw! We really don’t know enough yet to know what causes CC. Like they say, stay tuned for the rest of the story.January 22, 2014 at 6:48 pm #78359
Oh no, I don’t buy that. Why this cancer occurs has not been identified. Researchers have pointed to certain risk factors and obesity may contribute to the development of Cholangiocarcinoma however; there has not been a scientific explanation as to the molecular behavior of this disease and why these cells multiply the way they do. If indeed sugar consumption was the main culprit, then we would see a much higher patient population diagnosed with CC. Although, sugar and salt consumption in my opinion is way too high, but we cannot single out sugar and dairy as the reason for developing our cancer.
Please, do not put this on you. You have no reason to believe that you have caused this cancer.
Hugs and love
MarionJanuary 22, 2014 at 5:41 pm #78358ladylindenParticipantmarions wrote:fntn….I have been told that some people are more susceptible to cancer than others are. Why this is happening – no one knows.
So glad that you have found us.
Hi Marion, I have been a sugar addict for the past 20 years, but after my husband died, my addiction accelerated. I ate cakes, doughnuts, lots of pastries. I was also a 1 gallon of milk every other day person.
I believe that the liver and other organs could not properly process all the sugar.
I will go to my grave believing I was responsible for my cc. Sugar kills.January 22, 2014 at 1:26 am #78357pamelaParticipant
I am happy you sought a second opinion at U of M. I have nothing but great things to say about them. I hope you will see Dr. Chris Sonnenday and Dr. Mark Zalupski. They were my daughter’s surgeon and oncologist and are very wonderful doctors that really care about their patients. They have a great deal of experience with CC as well. I’m sure they will come up with a great game plan for treating you. I am wishing you all the best.
-PamJanuary 21, 2014 at 7:49 pm #78356fntnMember
A quick update and seemly no progress.
The second round of needle biopsies were negative again but they said things looked unusual. They want to wait for 3 more weeks and do another MRI/MRCP in February which makes it 3 months since the previous MRI. Meanwhile my liver enzymes have been slowly increasing (now up to: alt=37,ast=44) and the alp remains elevated around 180 or so. The WBC count is still high at 10 and my serum calcium level has slowly risen to 10.7, slightly above the normal high (I’ve read that CC can cause hypercalcemia ??).
Now I have the Univ of Mich Hospital involved as well for the second opinion and should hear back from them soon. They’ve taken my case to their tumor board for any additional input.
Waiting hardly seems like the thing to do but there seem to be no other choice. Multiple doctors have concluded that the MRI results indicate ICC but they remain reluctant to commit to surgery or any other course of action.January 11, 2014 at 2:08 am #78355pak001Participant
My mom was diagnosed with renal call carcinoma approx 12 years ago. Partial nephrectomy took care of that, but unfortunately, she was diagnosed with this 12 years later.January 8, 2014 at 5:12 pm #78354
fntn….I have been told that some people are more susceptible to cancer than others are. Why this is happening – no one knows.
So glad that you have found us.
MarionJanuary 8, 2014 at 2:25 pm #78353fntnMember
What a wonderful site this is, thankyou!
I’ll be going in again for the biopsy so I hope this new set of doctors will give it the best chance of a proper sampling. We’ll see.
Seems quite a number of others have had different forms of cancer in the past. Myself included, renal cell carcinoma, and missing some plumbing because of it. Is there any strange correlation with this or just bad luck?January 8, 2014 at 5:45 am #78352pak001Participant
My mother’s needle biopsy came back negative for cancer, but PET scan showed concern. They obtained sample via ERCP which came back at positive for the cancer.
I pray that you will receive good results!January 7, 2014 at 3:23 am #78351
FNTN…..I too would like to welcome you to our site and share a few additional thoughts.
We have seen that needle biopsies most often are either, inconclusive or negative for CC hence, your experience is not unusual. The upcoming MRCP should offer additional information and may eliminate any additional testing.
Please keep us posted.
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