Unfortunately, another introduction.

Discussion Board Forums Introductions! Unfortunately, another introduction.

Viewing 13 posts - 1 through 13 (of 13 total)
  • Author
    Posts
  • #98380
    middlesister1
    Moderator

    Hi Jonathan,

    I just wanted to share that my mother had the y-90 treatment in Feb 2014.  After it’s done, they still may say the tumor is still “there”, but hopefully the radiation will do the trick and what is there is no longer active.  For my mother, although the Y-90 shrunk her tumor significantly, we had the procedure done a second time in Nov 2014.  The thought was to attack it again while it was down.  And, the second time around, she took xeloda before and after to help with the effectiveness.  After those 2 y-90 treatments, we had 3 years of treatment-free living.  I hope the Y-90 gives you as much or more success.

    Best wishes,

    catherine

     

     

     

     

    #98338
    bglass
    Moderator

    Hi Jonathan,

    Thank you for the update.  How did the Y90 go?  Do you know the results yet?

    Treatment gets tiresome, but from what you describe your doctor is doing a good job keeping after this cancer.  The fact it has not spread out of the liver is good as well.  While having cancer is not what anyone would wish for, there is positive news in your update and hopefully the Y90 will work its magic for you.  Patients with cholangiocarcinoma do tend to move from treatment to treatment as they can lose effectiveness over time.  Your doctors if they know this cancer well will always be looking ahead to plan the next round.

    I am glad to hear you are feeling well during the treatment break.  Take care, thankfully spring is upon us.  The winter has been horrible in many parts of the country, so I am hoping we all see some sun and warmer climes in the next weeks.

    Regards, Mary

    #98336
    Jwhite3141
    Participant

    Latest PET scan shows that although the tumors have not spread outside the liver, the tumors that shrunk with four months on the GEM/CIS chemo have regrown to original size.

    I’m on a 4-week chemo break right now and am feeling well.  Still just very tired.

    I had the Y-90 procedure (radioembolization) last week and other than a couple of days of nausea, I’m feeling ok.

    Coming up on 5 months since being diagnosed. Hard to think about how few months I may have left with my family.

     

    #97916
    Jwhite3141
    Participant

    I see the Dr every week except for one week out of three when I do not have chemo. I check the patient portal but test results are not always available there prior to seeing the Dr.  I hate waiting as well but it gives me something to do at this point.

     

    PET scan results were good. The chemo is working. Tumor appeared smaller, no new tumors, and much less uptake of the glucose dye.

    CA-19-9 is still in the 30’s at 39 and liver function tests all appeared within or very close to normal ranges.

    Going to investigate directed therapies next.

    #97915
    bglass
    Moderator

    Hi Jonathan,

    Merry Christmas to you and your family!

    I hope the news was good from your scan and bloodwork.

    I was wondering why you are left to wait so long for test results.  Is there a patient portal where you can log in to see results?  For blood tests, sometimes I even call the duty nurse and ask, if it seems to be taking a long time.  Partly this is because a few times they’ve gotten lost so if there is a delay, I worry about that, but also it makes me crazy to wait more than a few days to know how the tests came out.

    Take care, regards, Mary

    #97904
    Jwhite3141
    Participant

    4 doses of chemo down. 5th one scheduled for tomorrow. CA-19-9 marker results so far: 87-91-92-31.  still waiting on the results from the last test 2 weeks ago but hoping this is a trend. PET scan results from 2 weeks ago due tomorrow as well. Fingers crossed.

     

    Merry Christmas,

    Jonathan

    #97802
    gavin
    Moderator

    Hi Jonathan,

    Welcome to the site although I so wish that you did not have to be here. Thanks for sharing what has and is happening right now and I am sorry that you are having to go through all of this. If we can help at all then we will so please feel free to post away as much as you want and ask questions. And if we have answers to your questions then we will help as best as we can.

    Not much I can add to what the others have said but I just wanted to welcome you here. Yes you are right in that so much of what is on the web in general is full of doom and gloom, but there is also so much garbage out there regarding this and most cancers. My advice to you regarding the web is to ignore so much of it and if you are looking for info etc then please use reputable sites. And of course the support that you will get on here from those who know what you are going through and dealing with is second to none!

    Looking forward to hearing more from you and my best wishes to you and your family,

    Gavin

    #97801
    Jwhite3141
    Participant

    Thank you all for your comforting words. They really do help. And you are all right, the internet is full of doom and gloom stories. Your experiences are so much more uplifting.

    Thank you so much.

    Jonathan

    #97779
    bon
    Participant

    Dear Jonathan.

    I am sorry to find you here but this is one of the best places for you to be considering the circumstance.

    My 58-year old husband was diagnosed with cholangio in March of 2017.  Two doctors told us four months, eight with chemo, which often doesn’t work on this type of cancer; the third doctor told me “one very hard year.”  Not too encouraging.  Surgery was attempted but failed.

    I’ve have many low moments but reading the personal stories here has helped me immensely to deal with this terrible diagnosis.  I’ve read many accounts aloud to my husband, others I’ve told him about while walking our dogs.  The doctors we’ve dealt with are wrong:   there IS hope, there are survivors of this.  We’ve searched and found better, more hopeful doctors.

    Initially, the klatskin tumor was almost 12 cm, with “satellites” (doctor’s word). Fortunately, there was no spread, one possible lymph node involved but nothing else.  We were lucky, very lucky as we found out.

    Husband did a couple rounds of gem/cis, hated it and switched to an oral chemo for several weeks.  January 1st, he decided he’d had enough – the neuropathy in his hands and feet had become intolerable.  By February, the tumor had shrunk to 3.5 cm and wasn’t large enough for proton therapy, which we were all set to do.

    So here we are, November of 2018, husband just had a PET/CT scan plus another scan (MRI, I believe) – tumor is now 2.5 cm and areas that lit up along the biliary duct are now cancer free.  The questionable lymph nodes are clear.  The scan was marked “improved” over the June scan which was marked “improved” over the January scan.  Our wonderful doctor at the Disney Cancer Center in Burbank (Dr. Jacobs) told us to do nothing- no chemo, no radiation, no clinical trials.  He thinks we may be able to go for a cure – or if not, treat the cholagio as a chronic condition.

    We accept that.

    We try to keep life as normal as possible, husband retired, we visit family, are fixing up our home and going on a family trip to Hawaii in a few weeks.  My husband says he feels great and looks completely normal again.  We are making long-term plans going forward.

    So, with that said, hang in there.  Cholangio doesn’t have to be a death sentence as many people here have attested.  Treatment options are better and there is a lot you can do with diet and lifestyle.  WE certainly believe the changes we’ve made have contributed to my husband’s prognosis and progress.

    Bon

    #97772
    spokanemom
    Participant

    Welcome!  I am so glad to hear that you are doing OK physically. My children were 10 & 13 when my husband was diagnosed 2 years ago.  I don’t know how old your children are, but I found that having children at home really helped pull us out of the “cancer world”.  They are so busy and we tried to keep life as normal as possible for them.  We are treating this like a chronic condition that is just a part of our life.  Both kids have benefited from counseling, one individually and one in a group run by our cancer center.  I love the group at the cancer center since the adults meet while the kids meet too.  It is a mixture of patients and caregivers.  I hope you are able to lean on your friends and family for support.

    Best wishes,

    Victoria

    #97755
    debnorcal
    Moderator

    Jonathan,

    I would also like to welcome you to our discussion board family, although I’m so sorry that you have reason to be here.

    I agree with Mary’s points- it is good that you are being seen by a medical center with expertise in CC, and also good that you started treatment promptly.

    CC is a frightening diagnosis and general information found on the intetnet can be so discouraging.  It is important to understand that much if that information includes results for patients treated by community hospitals with little experience with this disease.  The major centers are utilizing the latest research and treatment modalities,, and are having some success.

    My husband was in his mid 50’s when he was diagnosed with Perihilar CC, and his prognosis was very poor. At the time, we also had young (early-mid teens) children, and we refused to give in to this disease and go the palliative route, as advised by our initial doctors.  We got 2nd and 3rd opinions, and found a hightly skilled surgeon that was willing to resect.  Now, three years later, he is cancer free.  There are more and more non surgical treatments that have emerged in the last few years that are allowing patients to effectively treat, or at least manage, their CC.  My advice would be to try to stay positive and work with your doctors to consider best options for your particular presentation and  take each treatment as it comes knowing if it doesn’t work for you, there are second and third lines of treatment and new discoveries all the time.

    All the best to you and your wonderful family.

    debbie

    #97748
    bglass
    Moderator

    Hi Jonathan,

    Welcome to our community, but I am sorry that you have been diagnosed with our rare cancer.  It is positive you were moved into treatment quickly, and that you are at an experienced major cancer center.  Hopefully gem-cis will do its job for you.

    Were you able to have genomic testing?  Quite a few cholangiocarcinoma patients have genomic defects for which there are targeted treatments available through clinical trials.  This cancer is not good news, but on the positive side, the science is rapidly evolving and each year there are more treatment options available.

    Please keep us posted on how you are doing, and send any questions our way.  If you use the discussion board search engine, you can find other patients’ stories about chemo and other experiences that may be helpful to read.

    Regards, Mary

     

    #97747
    Jwhite3141
    Participant

    Hello.

    I’m Jonathan. 52-year-old husband and father of five great kids. Diagnosed 11/2 with ICC stage 3. Non-resectable.  Started chemo at Dana Farber in Boston on 11/6 – gen and cis. Other than a splitting headache on days 3 and 4, doing ok physically. Does not feel like this really happening.

Viewing 13 posts - 1 through 13 (of 13 total)
  • You must be logged in to reply to this topic.
©2017 - All Rights Reserved, Cholangiocarcinoma Foundation