Odie

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  • in reply to: Hi from Australia – sister recently diagnosed #101870
    Odie
    Spectator

    Hello…
    I also had extrahepatic Cholangiocarcinom… specifically perihilar.
    Mine was also caught early with a staging of T2aNOMO…But after surgery I had a positive radial margin with a “small focus” of cancer…(Therefore possibly microscopic cells left behind.)
    My surgeon and my oncologist are both specialists for Cholangiocarcinoma at USC Keck in Los Angeles, California.
    o   I was also put on the oral chemo drug XELODA (Capecitabine), along with an intravenous chemo drug called GEMZAR.  (Protocol = Infusion once a week and the rest of the week the oral drug. Two weeks on and one week off.)
    o   The XELODA-GEMZAR treatment was for approximately 4 months, followed  by a 5-6 week treatment of radiation along with a lower dose of the oral XELODA.

    My oncologist, Dr. El-Khoueiry, stated the pill form of chemo XELODA (Capecitabine) is the worldwide standard currently.    The U.S. is able to nuance the treatment a bit.  My doctor took part and helped develop the study called SWOG S0809…  (Southwest Oncology Group developed  and tested using a combination of these 2 chemotherapy drugs, followed by radiation.)

    I’m not sure this 2 drug protocol would be available in Australia… But perhaps asking for the possibility of radiation after Xeloda to help clean-up any leftover microscopic cancer cells, etc.

    I had 3 cycles of Gemzar, but my white blood count kept dropping to a dangerous level even after lowering the dose 3 times. I had to discontinued the Gemzar and I continued with the Xeloda alone, and they eventually increased the dosage of Xeloda.

    I’ve been scanned every 4 months since completing the chemo and radiation treatment, and all scans have been clear. I am staying positive that this trend will continue.  In October will mark 2 years since surgery.

    My advice to your sister: STAY POSITIVE…. She should develop a daily positive mantra she continually says silently to herself throughout the day… especially during times where she may be feeling more anxiety, etc.   This really helped me, and brought a sense of calmness when I was feeling over-worried or anxious.  Staying positive is half the battle.  She CAN beat this!

    Here is a link to the SWOG study if interested:
    https://pubmed.ncbi.nlm.nih.gov/25964250/   SWOG S0809: A Phase II Intergroup Trial of Adjuvant Capecitabine and Gemcitabine Followed by Radiotherapy and Concurrent Capecitabine in Extrahepatic Cholangiocarcinoma and Gallbladder Carcinoma

    Best of luck to you and your sister!
    Laurie

    in reply to: 1 yearversary of my diagnosis #101739
    Odie
    Spectator

    Congrats!  Indeed GREAT news. Inspiring and very happy for you!

    Best wishes,

    Laurie

    in reply to: 7 year survivor! #101737
    Odie
    Spectator

    Congratulations on your 7 years! Fantastic!  Thanks for posting and sharing your story… It really helps install hope and gives a boost to my daily positive mantra about beating Cholangiocarcinoma!

    In July I will be one year post treatments for peihilar CCA… and I am staying positive that my good health and NED will continue.

    Thanks, and congratulations again!

    Laurie

    in reply to: FIFTEEN YEARS #101736
    Odie
    Spectator

    Hello Pat… I was just reading your post now and wanted to say thank you for sharing your story… As well as say congratulation on your 15 year celebrations.  That is wonderful and so uplifting, energizing and confirming of my own positive outlook that I am going to beat Cholangiocarcinoma.

    I also had perihilar CCA staged at pT2aNOMO.   In October 202o I had 2 liver re-sections back-to-back to get clear margins… resulting in 80% of liver removed.  I recovered nicely from surgeries and had chemo and then radiation/chemo at the end of my treatment.  I finished treatments in July of 2021 and have been scanned every 4 months since.  So far all my scans have been NED which I am <span style=”text-decoration: underline;”>super thankful</span> for. But as you can relate I live with a constant underlying anxiety and always super anxious to hear the results of the scans.  I stay super positive, but sometimes can’t help think of the scariness of this disease.  Hearing your story is going to help me brush away those “scary” thoughts and only focus on being positive.   I’m being treated by the VERY best at  USC Keck/Norris, and all of my doctors have been excellent.

    October 2021 was my first anniversary after surgery, and this July will be my one year anniversary post-treatment. I am hoping my health continues to have NED and will join you in celebrating many more happy anniversaries in the future.

    Thanks for passing on your positivity and providing hope for all that read your post.

    Best wishes,

    Laurie

     

    in reply to: Dad diagnosed with CC, then had a PET that was clear? #101735
    Odie
    Spectator

    Hi Donna…

    Sorry for the time laps in the response. I’m just reading your post now.

    I also had a Klatskin tumor… Found with ultrasound, and then MRCP confirmed.  The ERCP showed narrowing, but brushing biopsy was negative.  More than 50% of the time it is a<span style=”text-decoration: underline;”> false negative</span> because CCA is hard to diagnose.

    I also had a PET scan that did not show anything… <span style=”text-decoration: underline;”>But my stints obscured the view in that area</span>.  This may be the same for your father.

    I had a second ERCP with more extensive brushing, and that time it came up positive for Cholangiocarcinoma.

    I was able to have a liver resection and the size of the tumor was 1.4 cm  (Yet it had not shown on the PET scan.)

    If his CA19-9 is elevated and continues to elevate this would be a sign of something.  The CA19-9 can elevate from inflammation anywhere in the body (such as from an infection), but usually drops back down.    Going from 600 in 2018 to 17000 now I don’t think is normal. (But I am not a doctor)

    I agree with Mary’s post and suggestion… It is VERY important to get a second opinion with a specialist.

    Best wishes to you and your dad!

    Laurie

     

    in reply to: Update about my treatment #101033
    Odie
    Spectator

    Congratulations!  Such great news to share… as well as inspiration to everyone struggling with this disease.

    Curious what your CA19-9 started at, and if you had intra-ahepatic CCA or extra-hepatic CCA?

    SO HAPPY FOR YOUR GREAT NEWS!  And looking forward to hearing of your ongoing success!

    I needed your inspiration!

    Best wishes,

    Laurie

     

     

    in reply to: Advice for Surgeon Choice in California #100810
    Odie
    Spectator

    Hi Arieolskie,

    As Mary noted, there is a list of “provider specialist” on this website.  To find it go to the “Newly Diagnosed” link in the top menu bar, and then select “Find a Local Specialist”.

    I also was treated in the Los Angeles area, and was treated at USC Keck Hospital by the surgeon Dr. Sujit Kulkarni and the oncologist I am working with is Dr. Anthony El-Khoueiry.  Both came highly recommended.

    I have been going to USC Keck for all my healthcare needs ever since I was diagnosed with DCIS breast cancer in 2014.   So the decision to stay at Keck was pretty easy.

    I was at USC-Keck when a basic blood-test detected high liver enzymes, and then future tests/scans/ERCPs at USC-KECK diagnosed perihilar Cholangiocarcinoma.   Dr. Van Dam was the doctor for my ERCPs and placement of stents.  He was the one to recommend theses specific doctors as part of my team.   I was very happy to see them listed on the recommended specialist list on the CCA Foundation website.  The other surgeon that was highly recommended was Dr. Yuri Genyk.    There are also 2 other KECK doctors listed, but I am not familiar with them, but if they are on the list, I’m sure they are excellent.   FYI….I had a second opinion video consult with a doctor at Mayo Clinic in Arizona, and he said it is really hard to make it onto the “provider specialist” list on the CCA website.

    It is great that you are talking to more than one doctor and it’s important to get a feel for who you and your Dad would like to work with.  I can tell you that KECK hospital is great, and the care I received there was top notch.

    Good luck to you and your Dad in making this decision and best wishes for much success in your path to beat this disease.  To both you and your Dad… Stay strong and stay positive!

    Laurie

     

     

    in reply to: White Blood Cell count dropping during chemo #100802
    Odie
    Spectator

    Thanks Mary for your quick response to my post and for sharing the SWOG info as well as your own personal experience with the treatment.  You have definitely made me feel better and eased my anxiety a bit.

    Technically this is my second week of Cycle #3 and because of the low WBC I am not having the infusion OR taking the oral Xeloda.

    I will see my doctor again on Thursday of next week to review the plan moving forward.  He has already done a dose reduction twice.  My drop in WBC consistently happens mid-cycle…at the beginning of Week 2….and therefore prevents me from the possibility of having growth factor injections (Nuprogen) to help boost my WBC.  Technically during Week 2 I should still be doing the Xeloda, and from what I understand you can’t have Nuprogen while still currently on chemo… It would only be administered on my “off” week.    I believe my Nurse Practitioner once stated the efficacy of Xeloda is best when taken 14 days in a row.    So it’s a juggling game at this point.

    I have a feeling when I see the doctor next week he may eliminate the Gemzar and just keep me on the Xeloda which is the standard.  Adding Gemzar was a more aggressive approach, which I do WISH I could tolerate.

    Following the 4 months of chemo, I will also do radiation along with taking the Xeloda.   I hope I do not have the same issue with my WBC during radiation.    I had DCIS breast cancer in 2015 and handled radiation quite easily without any problems.  I don’t remember them doing many blood tests, but I also was not on the oral chemo drug of Tamoxifen until after the radiation was over.

    Thanks again for sharing your own experience, especially during your radiation treatment… and the same anxieties you had when they lowered dosages etc.  It is both calming and encouraging to me to hear of your positive outcome!  Congrats to you Mary!

    I will keep you posted once I know my treatment regimen moving forward.  I will take this week off to stay positive and eat healthy!

    Thanks again,

    Laurie

    in reply to: Hello Everyone, diagnosed in May with IHCC #100787
    Odie
    Spectator

    Hi Bighorn 67,

    I recently joined the discussion board and was reading through everyone’s stories.  Yours caught my eye because I was also treated at USC-Keck ,but by surgeon Dr. Kulkarni… also a gifted surgeon.   I do not have IHCC but Perihilar Cholangiocarcinoma.  I placed my story under the “Introduction” Discussion Board if you want to read it… It’s near the top.  In short, in October about 80% of my liver was resected over 2 different surgeries.  I had all clean margins but for a small focus on the radial margin of the posterior duct.  Microscopic cells may still be lingering… So I am on a bit more aggressive chemo regimen of Gemzar and Xeloda for 4 months, and then will follow with 6 weeks of radiation along with still taking the oral Xeloda. My oncologist is Dr. El-Khouheiry, is he is also at USC-Keck.  He was one of the clinical trials designers and lead authors of this particular regimen called S0809, so I know I am in good hands.  He has had to tweak the dosage of Gemzar a bit because during my first 2 cycles my WBC kept dropping too low.  I just started my 3rd cycle and hopefully he has found the magic number for the dosage so I can have the Gemzar 2 weeks in a row as designed.

    If you read this, I was wondering how you are doing now that all your treatments are over?  How did you handle the radiation?

    I hope you are on a clear road to recovery!

    Best wishes,

    Laurie

    in reply to: Introduction / Welcome #100757
    Odie
    Spectator

    Hello everyone.

    My name is Laurie and I’m new to this forum.  I will give you a quick up-date on my journey so far with Cholangiocarcinoma.

    I was diagnosed with Perihilar Cholangiocarcinoma in October, 2020.  I had no symptoms whatsoever, but bloodwork done in August showed high liver enzymes.   Between August and October I had an MRCP and 2 ERCP and the second ERCP showed positive for cholangiocarcinoma.

    I had my surgery on October 21st at USC Keck by Dr. Kulkarni. (I was happy to see he was on the CCA Foundations list of surgeons.)
    He originally thought he might be doing a left tri-seg, but once inside he felt my anatomy of my right posterior lobe was a bit small.
    He ended up doing a central resection…This was also based on the pathology during the surgery which indicated negative margins on all ducts.

    After surgery the staging with the more in-depth pathology showed my staging to be T2aN0M0.  (Size of tumor was approximately 1.4 cm)
    But also the more in-depth pathology unfortunately showed positive margin on the left, and small single focus on radial margin on right posterior.   The doctor decided to go back in and remove the existing disease on the left.
    I underwent a second resection on October 30th for a left lateral lobectomy.   I now only have my posterior right lobe and bile duct…but it seems to be regenerating nicely.  My liver enzymes were monitored daily in the hospital and were good, and they are continually going down.
    I was in the hospital for a total of 19 days and went home on November 8th.
    My at-home recovery is also going well.  It has been 2 months post-surgery, and I am feeling fairly normal. The muscles-scar tissue around the incision are starting to bother me more, but I guess this is all part of the healing process.

    The gross disease has been removed, but with the real possibility of microscopic  cells remaining from the “single focus on the right radial margin” I will move to the next protocol of chemo and then radiation.   (I believe even with clean margins there would have been a protocol of chemo as a precaution, but now with the positive radial margin, the protocol will be both chemo radiation.)
    This is the protocol suggested:
    4 months chemo and then 6 weeks radiation:  Intravenous called GEMZAR in combination with the pill XELODA for 4 months, (2 weeks on and 1 week off) — Followed  by a 6-week treatment of radiation along with the pill XELODA.
    I started treatment on December 14, but my neutrophil white blood cell count dropped to 700 so the second infusion was postponed. I continued taking the oral Xeloda chemo, and then had a week off.  This week I had my second infusion with a lower dosage, and hopefully my WBC will not drop again.    I have had very little side effects from the chemo other than the WBC count, and being a little tired.

    There will also be molecular profiling /genomic testing of the tumor removed, but for some reason this has been delayed and I have not had my results yet… I keep asking.

    It has definitely been a scary journey, but I remain positive and determined to kick this disease.  Even though such a large amount of my liver needed to be removed, I think I was diagnosed relatively early.   I’d love to hear any feedback from anyone who is on this same journey.

    I wish everyone all the best in fighting CCA and staying positive for a much brighter 2021.

    Best wishes,

    Laurie

     

    • This reply was modified 3 years, 2 months ago by Odie.
Viewing 10 posts - 1 through 10 (of 10 total)