Discussion Board Forums Introductions! Trying to make sense of it all

Viewing 15 posts - 1 through 15 (of 21 total)
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  • #97773
    spokanemom
    Participant

    Dear Ken,

    Thank you so much for sharing!!  I love hearing from long term survivors.  My husband was diagnosed 2 years ago and to hear you have been 2.5 years NED after multiple recurrences gives me such hope.  I wish you well, Victoria

    #97572
    middlesister1
    Moderator

    Hi Ken-

    I’m still getting used to the newer board format-  but I loved having it come up at 2011 and then seeing your 2018 post.  My mother is a few weeks shy of her 5 year DX, so there are long-term survivors.  Her surgery was unsuccessful in 2013 ( just closed her back up), but chemo and 2 Y-90 treatments gave her 2.5 years of treatment-free living.  We thought we might have had a “cure” without surgery, but it did return in July 2017.  This time, she did proton radiation-  she finished up with that in Feb, and now we’re back to the scans and bloodwork every 4 months.  If we can’t sure it, we’re just hoping for lengthy treatment-free periods so she can enjoy life.  Earlier this summer she went with us for 2 weeks to Ireland-  this is not something we envisioned possible back in 2013 when they closed her back up.

    I wish you the continued success- in addition to the 7.5 years, the quality of life is so important too.  I am happy you are treatment-free and continue to be so long into the future-

    Catherine

    #97565
    hercules
    Moderator

    First,congrats on seven and a half years of life. I have not had any recurrence or Mets to deal with, however I am a long term survivor. Good health and nutrition are key. While dealing with cc one must also maintain the body as you always have, physical yearly, dentist, optometrist, dermatologist, and any other specialist one needs. My point is don’t let other things go while you are focused on cc. Eat smart, I drink a lot of cranberry juice, water, coffee,home cooked meals, get your sleep, avoid stressful people, the list goes on yet it is all common sense, fresh air, exercise daily. do you have PSC ? it sound like you are on your way to success, my best wishes, Pat

    #97563
    obrienfam5
    Participant

    Gavin,

    so yes, a very long time between posts!  I am now 7yrs, 6mos., Post diagnosis and resection surgery.  Subsequently, I have undergone 4 VATS to remove ICC Mets in my lungs and 3 SBRT to address 3 other Mets in my lungs over the first 5 years Post diagnosis and initial resection.  Over the past 2.5 years I have had no evidence of disease in either my liver or lungs.  No chemo at all.

    Over the past 4 years, Patty Corcoran and I kept track of each other as she was diagnosed a month prior to me and by my limited reading was the only long term survivor that I had found.  Unfortunately, just a few weeks ago we lost Patty as she was no longer able to keep this dreaded monster at bay.

    So why my reengagement after so long.  Well, I really never left, just read more than commenting and now I am back to trying to understand what the future may be.  There is very little that I have found out there of long term survivor stories or insights.  I want to continue to be one of those and I want to know of others such that I can continue to look forward with even more confidence.

    Thanks

    Ken

    • This reply was modified 2 years ago by obrienfam5.
    #53652
    gavin
    Moderator

    Hi Jim,

    Good luck for today with your PET scan. I will keep everything crossed for you and I hope that they can get to the bottom of what is causing your blood test anomolies.

    Best wishes,

    Gavin

    #53651
    marions
    Moderator

    Jim…my fingers are crossed for tomorrow. Good luck to you also.
    All my best wishes,
    Marion

    #53650
    jim-wilde
    Member

    Ken, I had a resection 5/09 followed by 6 months of Gemzar, and still get twitchy with when the scan ‘scanxiety’ times roll around. I have been blessed with exceptional doctors at NY Presbyterian, which is a continuing source of comfort. Tomorrow is a PET scan to try to resolve some persistent blood test anomalies. I should know by early afternoon whether to worry or not!

    As others have suggested, more opinions from really good sources is never bad, especially if there’s doubt. Good luck!

    #53649
    candrews
    Participant

    Ken, I highly recommend the Indiana University Simon Cancer Center in Indianapolis. That is where I am going. I received a liver infusion pump on August 8th of this year. Dr. Michael House is an excellent surgeon, and Dr. Paul Helft is a wonderful oncologist. My family and I feel very fortunate that we are located only about 30 minutes from this fantastic facility and this great team!

    #53648
    peggyp
    Member

    Dear Ken,

    My husband, John, was diagnosed with Stage IV intrahepatic CC a little over 3 years ago. They told us that if surgery didn’t take care of it, we had no other options. He had a resection where 70 percent of his liver, his right kidney, gallbladder, part of stomach, and part of colon were removed. Within 7 months, he had multiple tumors in the part of liver that had been left. He has been treated with chemo since March 2009. We take one day at a time and John makes himself do as much as he can handle on a daily basis. We are scheduled to see a specialist at Georgetown on Monday, Oct. 17 to discuss any other options that might be available as his scans in August showed the disease was progressing. As we are not ready to give up the fight, we will continue to pursue anything that is out there. John is 58 and we just celebrated our 36th anniversary in September and I still want to keep him around for many more years. I pray that your next scans will be good ones, so continue to look forward to life and stay positive. PeggyP

    #53647
    marions
    Moderator

    Ken….the Mayo Clinic, Sloan Kettering, John Hopkins see about 100 patients per year. Don’t hold me to it though as the numbers may vary however, I don’t believe by much though. All are good choices.
    I am hoping for others to chime in also and share their thoughts with you also.
    Ken, given that 7 months have elapsed since the resection the experts may very well want to continue to watch you with regularly scheduled scans.
    I am not a physician therefore; any thoughts offered by me must be taken as a suggestion only and must be confirmed by a doctor familiar with this disease.
    Good luck and please, keep us posted. We care and we are in this together.
    All my best wishes,
    Marion

    #53644
    obrienfam5
    Participant

    Chicago, il

    #53646
    marions
    Moderator

    Ken….You might want to take a look at the member established listing of physicians/treatment centers.
    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126&p=1

    Where are you located?

    Best wishes,
    Marion

    #53645
    obrienfam5
    Participant

    Margaret and Marion

    Its great to know that there are others with knowledge and experience to talk with as my wife and I traverse this challenge.

    Margaret, my prayers and thoughts are with you and Tom. I pray that you and Tom have many, many great days together.

    Marion, can you give me a perspective on those hospitals or medical groups that have the most experience treating intra hepatic CC. I read a lot of recent research regarding the chemo therapy and some more recent info regarding means by which to make it more effective.

    My next exam is December 1 and I want to be prepared to make good decisions.

    Ken

    #53643
    mlepp0416
    Participant

    Ken:

    Welcome to the site and to your new family of CC friends and CC caregivers. Please feel free to ask any questions and we will be there with some type of response.

    My husband Tom had a successful resection in June ’08 and in Nov ’09 presented with a new inoperable tumor. He did not have chemo or radiation after the resection. His docs that he has now all state that he should have had chemo after the resection. I only wished that I had pushed for chemo, rather than listen to the docs.

    Tom (my husband) was given 6 months to live in Nov. ’09 but after 2nd, 3rd and 4th opinoins he underwent 28 rounds of radiation and oral chemo, then about 5 rounds of IV chemo (Gem/Cisplation) and he is still here with me just abut 2 years later.

    Words of advice, never take no for an answer, make those docs ‘think outside the box’ ask what else can be tried. ensure that the docs you are working with have a good knowledge of CC. Stay positive! Take it one day at a time and enjoy your good days – on bad days sleep, rest, watch TV, read and just take it easy, tomorrow is another day and may be better! Surround yourself by your loved one and make those memories precious for both you and them.

    Hugs and Go with God and KEEP KICKIN’ THAT cancer.

    Margaret

    #53642
    marions
    Moderator

    Hello Ken….I would like to chime in and welcome you to our site. Obtaining second or third opinions (in my opinion) is a must when dealing with this disease. For example: The use of adjuvant therapy post resection is heavily debated amongst the experts. Although, there may be others out there, this is the only clinical trial I was able to find: (clinicaltrials.gov identifyer: NCT01073839.)
    I have learned that some physicians prefer not to have patients undergo adjuvant therapy simply because, they don’t know whether it works or not.
    Either way, a few more professional opinions are well worth the effort and monies spent. You would want to contact those institutions treating a high volume of Cholangiocarcinoma patients. Experts disagree however, in order to make informed decisions you need to gain as much knowledge as possible. As they say: Knowledge is Power.
    I am happy that you have found us and please, stay in touch.
    All my best wishes,
    Marion

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