FIFTEEN YEARS

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  • #69342
    maikki
    Participant

    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!

    #69343
    hercules
    Moderator

    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

    #69344
    whatnow
    Participant

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

    Keep them coming

    Janet

    #69341
    marions
    Moderator

    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

    #69345
    hercules
    Moderator

    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

    #69347
    gregf
    Member

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

    Peace
    Greg

    #69346
    mvpratt
    Participant

    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

    #69348
    mvpratt
    Participant

    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 :)

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

    Michelle

    #69354
    gregf
    Member

    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

    #8018
    hercules
    Moderator

    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

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