1 (edited by hercules Wed, 14 Sep 2016 12:05:53)

Topic: ELEVEN YEARS

I am just eight days before the eleventh anniversary of  the discovery of my Hilar cc tumor in my left hepatic duct. Tears well up in my eyes as I type it, no one was so ever grateful for any blessing life could grace me with. I am doing well, a recent blood draw shows no elevated anything, just normal. I am here to say this disease can be beaten for longer than anyone told me it could. For all you people new and looking for hope, please know it is possible. I have needed no treatment or anything after my January of 06' surgery. No stent, no further treatment other than watching for a sign of this awful cancer's return.  I have continued to try to help someone every day in some way, and I just hope someone reads this and realizes a beacon of hope does exist. I was out fishing on lake Erie today with my son (we didn't catch anything as the wind turned against forcast direction ) I still had a banner day and even love a day fishing with no fish... how cancer changes the way you look at everything, so there it is, my story of long term survival with no repercussions, I hope more of us can write these emotional words, as it's hard to share how I truly feel as I have somehow cheated this awful demon from taking another good life away.  Early diagnosis and prompt treatment are key to beating this disease, if you are fortunate enough to have symptoms that lead to the discovery of the cancer early that is the first thing one needs. secondly to not have a re-occurrence . I lost eighty pounds from time of diagnosis to 3 months after surgery.  I had an unusual tumor, which was likened to a small mushroom rather than like a wedding band on the inside of the duct as most cc hilar tumors are .from there they usually grow through and surround the bile duct wall, where it usually quickly grows around the portal vein, which is a direct link back to the liver. All of these things are a part of how it went so well, or differently. I have primary sclerosing cholangitis which they say increases the likelihood of a re-occurrence , yet I have remained cancer free. I use cannabis for appetite, pain management, and also because I like it. I eat healthy and remain as active as I am comfortable. Keeping weight under control is part of it, not to much or too little. Avoid tobacco smoke and polluted atmospheres, and don't allow this condition to stress you out. Sleep is important, go out and buy yourself the nicest mattress you can and splurge on that 1 thing. I cook all my own meals and I have a dog that walks me every day. there it is, I am happy and humble and grateful, and god willing I will be around a bit longer, I hope more long term survival stories come soon,    Pat

Senescence is a beautiful thing....

2 (edited by Gregf Wed, 14 Sep 2016 17:41:57)

Re: ELEVEN YEARS

Hello all. I feel like I am a long term survivor being 2.5 years but 11 years for Pat really brings hope.  My Oncologist tells me this stuff usually recurs before two years. He feels very good about my chances of avoiding a  recurrence. My tumor was perihilar and was removed with no lymph node involvement and clear margins although one was only 1 mm. I did Chemo gem/cis and radiation with Xeloda. I hope this helps bring some hope.I know it is more than I expected. I am very grateful for this time and hope to have many more years. More money is not my focus anymore. I walked away from a family business to retire at age 59 because ever since I was told I had this very nasty cancer I feel like work is taking time away from what I should be doing. Spending time with my family and helping others. Learning to live in the moment and get the most out of whatever time I have. Not my will but Gods.
Peace
Greg

Re: ELEVEN YEARS

Thanks for sharing... I love hearing the words 11 years and I cheated this disease.  It gives me hope to keep moving.  I think all of us have come up with different ways to keep the demon at bay but I want to say I agree with your suggestions and the very best one is to make sure we are sleeping well and to indulge in a new mattress ..... I too had a new mattress purchased when I came home from the hospital last year ... unfortunately I couldn't sleep well in this top notch one hell of a mattress because I sank to far in the tempurpedic part.... so I have slept on several different beds since then in my house... I have just purchased the " new mattress" to get me back in my own room..... so with all of this run on sentence I am whole heartedly agree that a mattress is key to recovery smile

I hope you keep adding the years one year at a time!!!

Michelle

Re: ELEVEN YEARS

Greg


Glad to hear your story as well.  There is so many of us ...... I am anxiously awaiting medical literature to be updated... I think we will be surprised to see the change.  I too like to live in the moment and I think what if this is my last............. It often makes me irresponsible... in others view but I know that I am creating and capturing moments in time with my family and friends that cannot be replaced. 

Hang in there... Wish you too many more years one day at a time.

Carpe Diem!

Michelle

Re: ELEVEN YEARS

Mvpratt
Thank you for your comments.The surprise is advances in treatment I hope. What are you surviving?

Peace
Greg

Re: ELEVEN YEARS

Mvpratt
Thank you for your comments.The surprise is advances in treatment I hope. What are you surviving?

Peace
Greg

Re: ELEVEN YEARS

Thank you Lainy, Gregg, and Michelle for your replies, Lainy, time passes quickly, hope you remain cancer free for many more. Gregg, just remain positive and live life, I retired at 54 and I believe it is the best thing that I ever did as it helps you remain stress free. Michelle, a moderator of a local cancer support group I attended cited a statistic that over 50% of all cancer survivors experience some level of insomnia, and let me tell you, insomnia can destroy you. Making your bed a place You love to go, spend money on it and make it look inviting and comfortable, as a survivor it will be the best investment You can make. Being well rested helps the body more than any other requirement so never forget 1/3rd of your survival is spent sleeping, so make it as enjoyable as you can.  Thank You all again and keep going,  Pat

Senescence is a beautiful thing....

8 (edited by marions Fri, 16 Sep 2016 15:14:45)

Re: ELEVEN YEARS

Michelle's  Story (Mypratt)

I am not sure where to start this post other than to say I am a cholangiocarcinoma survivor of 5 + years.  In addition to being a surviovor I am a wife of 19 years, mother to two amazing-teens one 19 and the other 16 years old, foster mother to a developmentally delayed adult, an aunt to amazing nieces and nephews, sister to two younger brothers,  Nurse Practitioner serving our veteran population, and so on and on... The reason I start with all of these roles is because it has been so important in my survivorship to not let that be my only story.....

With that being said I will share my story of diagnosis and then of when the " ah ha" moment came to me that I can say " survivor" .

It was the summer of 2011 and I was going to take my children to visit my younger brother in NJ for the 4th of July and I was going to be crazy enough to drive by myself instead of flying.  About two weeks before my trip I was at work and had terrible right sided pain with some nausea.  I being the medical provider assumed it was a gallbladder attack.  I had my colleague take a look and she too thought maybe gallbladder but was a bit insistent that the pain was more towards my liver.  I went home and went to bed due to the pain.  The next morning the pain was gone.  I had already made a doctors appointment and thought that if I didn't keep my appointment then for sure i would have another attack while on I- 95 in the heart of holiday traffic outside Washington DC...
So I went to the doctor and she did an ultrasound.  Well that ultrasound did not show a bad gallbladder but instead a mass in my liver. From there it was on with the testing. My doctor ordered a MRI the next day. I knew the minute I came out of the MRI that this was not looking good.... the tech said " you should not worry about anything just enjoy your trip and family.. thats what really matters."  So I frantically waited for the results..... this I believe was the birth of the scan anxiety we all know so well. I waited and waited while getting ready to leave the next day and finally called the doctors office to get the results... the nurse kept telling me that it wasn't back.  I finally pulled my NP card and said I knew for a fact she had the results as the test was stat... and that someone needed to read me the impression or I was going to come to the offie and wait until someone did.  This worked well and finally the doc got on the phone and said she didn't want to ruin my holiday so she was going  to wait until i got back to tell me I had metastatic cancer...... well that was not what I was expecting.  From there it was what we called the " Great Caner Race of 2011. I was sent to see a liver doc asap - from there mammogram, scopes for upper and lower gi, and finally the liver doc called the surgeon because everything was negative. By this time I started freaking out... I couldn't understand how I had metastatic cancer and felt so normal. It didn't make sense.  My surgeon team( heptabilliary)  ended up being one of the best in the south and immediately there was more scans, biopsy, and finally diagnosis. My surgeon then told me he could fix it... that was all that I needed to know. That has been always all that I needed to know.I then was scheduled for a chemoembolization two weeks prior to my surgery and then the right hepatectomy and then radiation with 6 weeks of oral chemo.  Poof... my gigantic tumor " ms. Sally toad " as I like to call her was killed, removed, zapped and warded off by this chaos.  All of this took place in the span of 3 months. I thought I would never have to see this ugly cancer again.  If I got to the 5 year mark I then would consider myself a survivor.... a winner... I beat it.

Fast Forward to August 23, 2015 and I am in the emergency room for what I though a herniated disc with some nerve compression.... the worst pain i have ever felt. I am demanding that someone do an MRI of my back and not give me another steroid or pain pill again.  I had gone several times throughout July trying to get my back fixed.  Because I pulled my NP card as soon as I got there I finally was going to be imaged.  Never expected that Sally Toad had left some tadpoles with her departure.... I had a tumor taking up most of L5 in my spine and mets to my lungs.  The ED doc didn't know how to tell me ...she just handed me the imaging report and occasionally asked if I was ok.... Well.... not really ok for sure... Ended up admitted to the hospital.. on pain meds and high dose steroids so that i could walk.. Had to demand to get my oncologist involved ... as they had not notified him and from  there the games began.... I had immediate radiation to my spine to kill that little guy hanging out and to get me walking and out of pain... I had radiation to a small " menigioma" to ensure it was not cancer and chemo since.  I have to date 27 chemo treatments with gem/cis.

Fast Forward again and I am attending the CCA conference in Salt Lake City. I have brought my best friend and it so happens she is a NP also to make sure we are able to take in all the info from the conference. I am busy listening hard to the speakers but she is out talking to all the amazing people there .  We go up to the room at the end of the day and she reminds me to reach out to some of these folks and that she found someone else with mets to bone and I should talk to her later.....that I should share my survival story.  I looked at her at that moment and laughed... I couldn't stop laughing... might have been the pure stress of everything I am not sure what but I remember telling her.... I don't have anything to share ...I lost... the cancer is back and we are back to step one with Ms. Sally.  Then it was her turn to laugh uncontrollably... like this was the best joke she had every heard... and proceded to say.. of course I am a survivor ... I am still ALIVE despite all the mortality rates and bleak statistics that we read..... I am ALIVE that is what it means to be a survivor.  I just laughed and then turned to tears.... because what a moment to have.... I was still alive ... I was still fighting and winning ... I did not have to go back to step one.... and some folks probably would say I had survivorship going on my 5th year..... It didn't matter that I was fighting again... I had time on my side ... I made it to a full 4 years and was moving into my 5th with no problem..... Hell yes I was a survivor......

From that moment on it has been my passion to make sure the word gets out..... there are those of those that have time on our side.... who have made it past the bleak and outdated predictions... That people being diagnosed with this disease can read somewhere that people do live and are living with this cancer.....

So I aplologize for the long post but I wanted to share my diagnosis journey as many of us have had a difficult time... I also wanted to share my moment of celebrating that I am ALIVE, this cancer has not taken my life from me and that I am a Survivor despite having to pick up the fight again... My plea with my oncologist is just keep me alive one more year.... and so on as medicine is right on the brink of having the answer.... i just need to keep living one more year until medicine catches up.... until that happens I will continue to fight and celebrate my survivorship!!

Michelle

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: ELEVEN YEARS

as a 'newbe' to this group, survivor stories (recent) are very soothing.   

Keep them coming

Janet

Re: ELEVEN YEARS

Michelle, I am sorry, I read your reply before your incredible story, and you are spot on, you are alive and living, you have so much to live for, and your strong outlook is everything, I was very lucky in so many ways. I believe positive karma is a huge part of our outcome. We don't lay down and let it happen, when necessary I will take chemo or anything they advise. I am not afraid of the future, but only hopeful. All along I have dealt with this unsure but hopeful. My outcome has been by far better than most, but there are those here who have had great success with chemo, and other treatments. We must evolve and learn from those who had success. I have always wrote value every day and use your survival instinct to guide you every day. I hope your battle continues to be a winning fight,  Pat

Senescence is a beautiful thing....

Re: ELEVEN YEARS

Eleven years a survivor is truly something to celebrate! I am a one year and nine month survivor, but who's counting?  I also had PSC, but that was considered cured also, as I had a liver transplant to remove my intrahepatic cc tumor as that was the only option.  I can only hope for you that you continue to feel well and the PSC does not cause a recurrence.  I believe attitude and strength is half the battle and you clearly are living a life that is healthy and happy.  It is people like you who make it easier for the rest of us to believe we can also make it 11+ years post diagnosis.  Thanks!

Re: ELEVEN YEARS

sitting in chemo session 5 right now, love all these stories, they help so much. Michelle you made me laugh, thank you!

Lorraine

Re: ELEVEN YEARS

Loraine  So glad to provide a laugh because we certainly need them right.  ha ha   I know that I tend to do as much laughing as I can... I think it is good for our souls and provides some levity to our so serious lives. 

I look forward to hearing others stories so I too can have a good laugh and celebrate how we all are surviving this cancer one day at a time smile

Michelle

Re: ELEVEN YEARS

OK CC Family, I HAVE A GOOD ONE THAT AFTER 8 YEARS we still double over with laughter.  My Teddy "relocated " 5 1/2 years ago. He was a true Sicilian and after he was DX he started wearing his CC bracelet. He could NEVER pronounce Cholangio. We had company from Milwaukee and went to our favorite Italian restaurant. Rocky (yes Rocky) asked Teddy what was on his bracelet. Teddy says, "Oh that's my Cancer". Rocky says, "No I meant what does it say?" Teddy answers, " Angelo Carcinoma". Leave it to my Teddy to make a Sicilian our of his Cancer!! I thought I would choke trying not to laugh at the time. And, YES, HUMOR is the best way to get through bad times or any time. 

Our humor at CC was during his DX. He was very jaundice  and I looked at the ONC and Teddy and I said, "You know  I don't like you in yellow!" That time they cracked up.

THANK YOU FOR LOVING ME! Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: ELEVEN YEARS

That is incredible! Wonderful for your recovery!
I never imagined to be here or learning about this condition.  I didn't even know anything about bile ducts,not a part of the body you commonly know about.  Until my 74 year old mom , out of nowhere was diagnosed with Klatskin tumor, adenocarcinoma. I still want another pathologist to look at tissue sample, although two GI doctors diagnosed it as this before the biopsies. It was determined from the "bad location" which they love to emphasize.  It is at both left and right hepatic ducts at the common duct, and before biopsy said she is not candidate for surgery.  Even better, I would not want her to go through the torture of surgery as she is already weak from a current anemia.  The liver mass was found during an MRI to look for the source of anemia, and instead this was eventually found and finalized through ERCP.  The GI doctor also said she is no candidate for chemo, which is also good since she is not strong to handle chemo.  This is tough, but there must be some treatment which boosts the immune system, as I think this is what needs to strengthened, and doctors need to look at patients as individuals and not use the same treatments for everyone.
I can't believe there is no research or studies dedicated to this cancer compared to other cancers.  I feel there is not enough advancement and know that oncologists make most money from chemo treatments.  I disliked the GI doctors for being extremely negative, and basically didn't do anything ,but give a diagnosis.  Once GI doctor didn't even have the decency to call and report to us the diagnosis of Klatskins.  The only way I found is by getting the pathology report by my own effort, and no doctor involvement.

Again, it's incredible since I am in the beginning stages, to hear success stories.

Re: ELEVEN YEARS

Dear Positivity, where is your Mom being treated and is the Doctor an Oncologist VERY experienced with CC? CC is still so new that many in the medical profession have not even heard of it. The key is to be with an experienced Oncologist. We have come a long way since my husband had CC over 10 years ago. There is research being done and new trials coming along all the time. There is no reason for your Mom to not be getting good treatments. I think you mentioned before that she is seeing a GI or a GP and she really needs an Oncologist. Best wishes to you and your Mom.

THANK YOU FOR LOVING ME! Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: ELEVEN YEARS

My Ma has it and is bedridden at home as she does not want to go to a home or palative care.She sleeps.Now I have been diagnosed with bile duct cancer and am 58.. For 3 years I've been going to MRI,ct scans and even 2
Liver biopsy...I am going to try the almonds instead of chemo.What do you people think about that.Would you do the chemo..Help

Re: ELEVEN YEARS

Ubri wrote:

My Ma has it and is bedridden at home as she does not want to go to a home or palative care.She sleeps.Now I have been diagnosed with bile duct cancer and am 58.. For 3 years I've been going to MRI,ct scans and even 2
Liver biopsy...I am going to try the apricot kernalls instead of chemo.What do you people think about that.Would you do the chemo..Help

Re: ELEVEN YEARS

Ubri.....I am trying to understand, does your Mom have cholangiocarcinoma and you too have been diagnosed with this cancer?

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: ELEVEN YEARS

Hi Marions,
Thanks for your response.  My mom recently was diagnosed and I am scheduling appointments with Oncologists.  She only saw the GI doctors for the MRCP, ERCP procedures and a diagnosis based on what they saw from scans. They diagnosed the same before the pathology reports.  I was extremely displeased with the first GI doctor who did the ERCP, and she did not do a thorough job which another doctor had to redo the ERCP.  My mom also experienced complications from the first ERCP which made her more sick.  It's extremely important that people choose a very experienced GI doctor for an ERCP, this takes more knowledge, skills, and tools than your basic procedure.   
I am looking into City of Hope , UCLA, and does anyone know about Cedar Sinai?  I am glad to hear that there is better treatment today.  I am in the beginning stages of looking for treatments since my mom is definitely not a candidate for surgery, liver transplant, or chemo.  That's a good thing! I feel those will make her worse and not worth it.  This is due to her age and anemia.

Thank you!

Re: ELEVEN YEARS

positivity..... Education is a powerful tool.  It helps us understand and based on that understanding we are in a position of making the best choice possible.

Choosing a center treating a high volume of cholangiocarcinoma/bile duct cancer is key to obtaining a second, professional opinion. USC in Southern California has a robust hepatobiliary department and the physicians:  Dr. Lenz and Dr.  Dr. El-Khoueiry are two oncologists "very" familiar with this cancer.

It is unlikely for you Mom to be offered chemotherapy or perhaps any other targeted drugs unless her bilirubin is at 2, hence I am hoping for the stent to do the job it is meant to do.

I much agree with your complaint about the failed stent procedure.  We know that stents can migrate and can cause problems  including cholangitis, ulceration, bleeding, and perforation, and as you mentioned physician errors have horrible consequences.  So sorry.

You are a good daughter by advocating strongly for your Mom in the way you do.  I hope your Mom is feeling significantly better and you are able to connect with a specialist real soon.

Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

22 (edited by hercules Sun, 18 Dec 2016 04:48:18)

Re: ELEVEN YEARS

Ubri,  I understand that many people are more fearful of chemo than the cancer itself. I have gone to local cancer   support groups and sat with people that are receiving chemo treatments at the time and some get relief from symptoms of the cancer. Everyone is different and every case is unique in some way but similarities are many.  Perhaps attending a local cancer support group would give you the opportunity to talk with people  getting treatments and tell you first hand the good and bad. There are herbal products that claim to help the body fight cancer, but once a tumor has formed it becomes a more difficult battle. I hope You find a treatment soon, Do what you must do, surgery is not easy either but one must do whatever it takes to stop or slow this cancer.  I wish you the best, Pat

Senescence is a beautiful thing....

Re: ELEVEN YEARS

hello all
hercules do you get chemo ?  how was is it ?

marions what are targeted drugs  ?

“What does not kill us makes us stronger.” – Friedrich Nietzsche

Re: ELEVEN YEARS

No, Alikemal, I have not had chemo, I had a resection surgery (70% of liver removed) gal bladder and partial duct resection .  At the time my oncologist recommended that I forgo chemotherapy . He said there was no effective chemo for my cancer. I take an anti inflammitory  drug that seems to open up my bile duct and has kept things working for a few years now. No stent, no further treatments whatsoever since Jan. of 06' . I have said it is, perhaps, the best outcome one could ask for. My digestion and functionality were perfect for maybe 8 or 9 years. I have had some bilary restriction issues that for now have been kept in check with the Meloxicam.     Take care, Pat

Senescence is a beautiful thing....

Re: ELEVEN YEARS

thank you very much for sharing.  what was your stage and age when you had a resection surgery.

“What does not kill us makes us stronger.” – Friedrich Nietzsche