Buddist Wisdom Quote (Page 1 of 2)

When my mom was diagnosed with cholangiocarcinoma we supplimneted her treatments with the powers of thought and attitude. we discovered this man, Masaru Emoto, and his website, http://www.masaru-emoto.net/english/e_ome_home.html. It is so inspirational to read about his work.

We desided on tyhe treatment words of love and gratitude and they have been a part of my life ever since. I high recomend that everyone find themselves in a few powerful words and live by them as often as you can, letting them become part of you can do nothing but good!

thank you for sharing your words!

laura

Hi Jeff, (and everyone of you)
I am new to this site and this is my first of many posts  hopefully.  I discovered this site just a week ago.  Although my family has been dealing with Cholangiocarcinoma for over a year, I really couldn't find a support system(although I was focusing more on Bile Duct Cancer support groups, and not the lovely technical  term for this beast of a disease)  My dad, Roberto, 73, was diagnosed last July (07) with the cancer, after we discovered his whites of his eyes were yellow.  Now in retrospect(ofcourse) there were many other signs- on a family vacation to Florida that prior April, I thought it strange that he would tire after an evening walk with his 6 grandchildren.  Usually when we would come down to their vacation house in Florida, he would constantly be doing a project, to keep the house looking nice.  That vacation he said, "what is the point we only are here 2 weeks a year."  This is a man who born in raised in Italy came to America with a third grade educaiton and went on after working sometimes  3  jobs at a time to learn the trade of plumbing and built a huge business with the sweat of his brow.  He refused to retire, and he often said "if I cant work anymore, I will be 6 feet under".  So suddenly, fast forward, my mom, my two brothers and I are sitting in a waiting room at Evanston Northwestern Hospital last July as my father has an ERCP preformed on him to see if the "growth" is cancer.  It could have been a gallstone, or an ulcer(yada, yada, yada) but I knew(you know when you just know?)  So out came the dr. with the news,  and that started the nightmare.  I will say after lots of research and this amazing site, that we did did get lucky b/c on August 17(07) my father had the Whipple performed successfully.  There was no mets or spreading of the tumor at the time, there were 5 out of 9 lymphnodes.  The whipple kicked his butt, but he was a trouper and was back to work(cause that is what my dad knows to do) after 2 months.  6 months of Gemzar and surprise, surprise, "suspicious spots" were found on his lungs in July.  They were spoted in March, and then there was change and a bit enlarging in July, and then some more change in August.  So not that I am the expert, no one should ever have to be, we are fairly certain they are cancer. (3 nodules, as of late august measuring in the mm) We haven't been back for recat cause the Oncologist told me over the phone that if they are cancer and they probably are, that there is nothing they can do.  Chemo will distroy his quality of life.  She estimated 4-6 months for him to live.  I  listened to her, and decided not to take her word. Which brings me to you Jeff- I love your attitude, I don't believe any human life can be part of a statistic.   In my fathers case, we tell him nothing of statistics, he feels good(well good enough for 74)  He has his weight back, he has a decent appetite, works sometimes, not always now physically, but he runs the company from his home office with my mom.   He is fairly reasonable when it comes to taking my dietary supplements(I am a self educated nutritionist now) he cut out coffee, most redmeat, eats tons of fruits and vegetables(one huge carrot everyday) Wine?  he will never cut out his 2 or 3 glasses a day(hey, he's a dago) Wow, sorry, long post, hope I didn't bore anyone.  My heart goes out o anyone fighting this disease.  I am a single divorced mom who father has done so much for me......for everyone out there, where there is life there is hope, thanks for listening.   Barbara

Hi Lainy,
Thanks for responding.  Wow, Whipple 3 years ago!  That in and of itself is a success!  I'll never forget sitting in the Oncologist office last September and her saying "very few survive a year after the surgury" with Cholangiacarcinoma.  I nearly lost what little I had in my stomach and right then and there I realized our oncologist was really negative.  Some may say realistic, but I don't know how and will never know how a cancer patient has a fighting chance with a defeatist attitude.  With this particular cancer we all need a bunch of things in our corner- good doctors, who are willing to stelp outside of the box(and stats)good diet, good attitdude and the GOOD LUCK! I was unclear in my original post, we are going for  a second opinion.  This Thursday we are going to Cancer Treatment Centers of America, there is one in Zion Illinois which is only 45 minutes from where we live.  I have done a bunch of research on them, and I like that they treat both chemically, nutritionally and spiritually.  My family really needs the latter of those three.   We were at a great hospital for the Surgury, our surgeon went in and got that bugger tumor out and resected my dad in less then 6 hours, the recovery was rough, but doable.  My dad has issues only sometimes with what he eats ie no more spicy food, nothing heavy at night.  He has had a few hernias removed since the surgury and he latest trauma was a bacterial infection from the surgury which landed him in hospital.  So it hasn't been completely rosey(not with this cancer, obviously) but we were getting by.  What I cant do right now is listen to an oncologist who is throwing in the towel, and if the next 2 or 3 Drs. I talk to do the same, I will find someone who doesn't.  I believe, where there is life there is hope, and cancer cells dont always have to continue to grow.  Teddy seems like a great fellow piasano!  What part of Italy does he originate from?  my dad Rome.  We just sat down the whole family-including 6 grandkids and had our Sunday pasta lunch.  We get together a lot more than we used to, which isn't always easy with kids and all their activities, but we all Know how IMPORTANt it is now.    Gosh, I feel better allready talking to someone that understands this beast CC. Thanks so much, Barbara

Barbara.....I also would like to thank you for your story re: your experiences with CC.  Stories such as yours help us all to better understand this cancer, how it is being approached and how it is being treated. I would also love it if you would share with us your upcoming visit with the Cancer Treatment Center of America.  Good luck and I am sending tons of good wishes your way.

Laura,

I read Emoto's book and thought it was fascinating.  My sons looked at all the pictures and were amazed, they wanted to do their science projects on this.

Right after I read this book I took my labler and put "love and gratitude" in the glasses that I drink water from all day long.  My sweet husband (ever patient) said, "what have we been reading"  (haha).

I'm looking at love and gratitude all day long.

Stacie

Lainy,
Can you give me your regular E mail.  I would love to exchange Italian stories with you.
Thanks

Barbara,

Hi, welcome to our little circle of friends. I lost my mom, Pamela, just over 3 months ago and I know how hard this cancer can be to wrap your head around. I am in Chicago, if you need anything or any help or just need to talk, please e-mail me. I put a post out there to see if people in the area want to meet in person but so far no one has replied, see:

http://www.cholangiocarcinoma.org/punbb … hp?id=2064

I hope your parents can make the trip to Italy in January. My mom was born here but she was Italian (Abruzzese) and my mom had gone to Italy before but she and her cousin had been talking about going to Italy together but they never went. She also used to make spaghetti for everyone once a week so we have lots of memories.

Patty

Barbara,

My mom was treated at Loyola, she was diagnosed in Dec. 2007 and fought it for 8 months, she was 66 years old and also had heart problems and was in general poor health so she was not a candidate for any clinical trials but she did have a resection (thank you, Dr. John Brems) and I am certain that is the only reason we got 8 months with her.

I think it's good you are going to Cancer Treatment Center, I looked into it but the problem was my Mom never really recovered from the surgery enough to be offered much else in the way of further treatment, she was just too weak, she got a few weeks of radiation and chemo but even going to the oncologist's office a mile away was very tiring for her. She also ended up back in the hospital with fevers/dehydration 3-4 times. She spent 6 weeks in a rehab trying to get some muscle back but still needed a wheelchair after she got out. Still, the time we had with her was quality time and she was able to enjoy herself and laugh with us and it sounds like you are savoring the time you spend with your Dad.

I think there is reason for hope, there is always research being done. Many people don't know that Walter Payton died of the same cancer and his family sponsors an event to raise money, I found out about it too late to do it this year but would like to do it next year, see:

http://www.payton34.org/run/default.aspx

Patty

Welcome Barbara...
...and I'm sorry that you have had to find this site, but as you have learned, you are among the best.  Lost my beloved dad to cc 15 mondays ago. 

Was interested in learning about Walter Payton...one of my favorite Bears.  When I was advocating for dad between oncology/chemo nurses who understood dad had cholangiocarcinoma  and the nursing home staff, where dad stayed briefly, who kept calling it pancreatic cancer.  The Nursing home  staff told me that it was the same thing...just a question of semantics.  It was a time to pick battles so I just let it go.  Fortunately the oncologist and chemo nurses were very open to my questions and really helped me out.  I'm not surprised that there are reports, etc that identify CC and pancreatic cancer as one and the same.  We are further fortunate to have such a forward-thinking website as this one is, that does so much to make health care providers aware of this horrid cancer.

Wishing you and your family the very best.
Jolene

Hi Jolene,
Thanks for the note, I'm so sorry you lost your father.  I am a "daddy's girl" too and I can't yet imagine the thought(dont want to imagine) of losing my dad.  I am an only daughter, and my dad took such good care of me all my life, even through my bad marriage and divorce, and now I am honored to take care of him.  I do it with all my heart and soul. 
I think the reason It took me 16 months to find this site is b/c the Oncologist treating my dad was calling the cancer Bile Duct Cancer and not Cholangiocarcinoma.  It wasn't until I was on Cancercompass, that someone wrote in talking about this organization.  Im starting to understand, if a hospital doesnt see a lot of a certain type of cancer, they aren't going to do any research.  The hospital we are(were) being treated at basically said the cancer metastasized and therefore the chemo(gemzar) didnt work, so there is "nothing else we can do."  The Oncologist gave him 4-6 months and told me to schedule a follow up in a few months.   Im not mad at our Oncologist, it is just that this particular hospital isn't focused on finding a cure or even palliative care for this cancer, so I will search till i find a hospital that is interested.  As far as the confusion with Walter Payton,  I think that is just awful to lump together the two cancers when they are different and the treatments are different.  Infact I was a big Walter Payton fan and up until my father developed CC, I always thought Payton died of Pancreatic Cancer, b/c that was stated in the media.  CC too hard to pronounce or Bile Duct so rare that it was easier to call the cancer something else?
Barbara

Yes, I do believe whole heartedly, if one isn't happy with a cancer diagnosis, or treatment, or "life expectancy" of a loved one, seek out another Doctor.  There are so many cancers out there, that it only stands to reason at times that one hospital doesnt have as much experience, or research, as another hospital.  In our case, atleast based on some phone conversations and e mailing CTCA has treated lung mets with CC and is willing to try to help my father.  Our current Oncologist said to go home  and enjoy our time together.  I am not saying that wont be what we will untimately do, but I need to have more options and information. I couldn't forgive myself if we didn't atleast try.....
On the topic of finding this particular organization, when I googled Bile duct cancer and Bilary cancer, I never found this site.   Pancan came up often, and some other support groups, but nothing as thorough as this.   With only 600 cases(is that correct?) diagnosed a year, it is going to be difficult to get the awareness out there, but I am certainly willing to lend a hand in doing so.
Peace To All

Hi Darla,
I thought I'd tell you, My family went to Cancer Treatment Center of America in Zion Illinois today to get a second opinion for my dad's mets to the lungs and the the ONC kept calling the cancer -" Bile Duct Cancer."  So I said, "do you ever refer to it as Cholangiocarcinoma?"  and the Doctor(who I really liked) said, thats the technical term, and he usually didn't refer to it with patients that way, and so I did tell him about this organization, and how I didn't find out about it until I started googling CC.  Also, I asked how often he sees this type of cancer and he said a few times a month only, and this is a really big hospital.....I do think you are correct, that there is misdiagnosed cases.