from a new member

Discussion Board Forums Introductions! from a new member

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  • #95905
    Wmeisel
    Participant

    Thanks Pat, Mary and Malinda,

    It is so helpful to have three new friends in my corner.  The good news is that after bugging the front desk , they have moved up my first scans and consultation for the middle of November.  I am not sure why i am in such a hurry , especially if it is hard news.  But each of you have gone through your own courageious journey so I will call on that for strength and inspiration.

     

    Blessings,

    Rev. Wayne

    #95904
    hercules
    Moderator

    Wayne, as Mary and Melinda have said, much can be learned from your pathology report, you should request a copy from your oncologist the next time you see him, also a surgical report, for your records, personal knowledge of what was done, and also if you see a new doctor in the future you can make a copy for him/her be it Gastrointestinal doctor or other. Your doctor will assess your results and recommend either further treatment or no further treatment depending on his experience and that of his associates, my doctor recommended no chemo, and he said he would order it if it would help any feelings of anxiety if I wanted, I did not want it just for my state of mind, and back then, almost twelve years ago, he said it would not have an effect on my tumor, which was moderately differentiated with a papillary presentation, no lymphatic invasion, clear margins . You will know more about your case, and your doctor will know you did your homework and you are paying attention.I am not against chemotherapy and if I had a doctor recommend it in the future I would take it, so my take is do what your doctors say, they saved you so far, your spiritual oversight is good so things will work out. I was blessed with many great breaks, and my case went about as good as one could hope for, and I am very grateful and I want to be a voice and a presence that I didn’t have when I was where you are, that is why I am here writing this, I am immeasurably grateful for all I have gotten. I am grateful to be here for you and others like us, may your case continue to be like mine was, Pat

     

    #95899
    bglass
    Moderator

    Dear Wayne,

    I hope everything is well with you and your family.  We all end up learning a lot of new terminology with this cancer.

    Clear margins are a very good result of surgery.  It means that no cancer cells were found in the margin of tissue around the excised tumor.  The doctors’ shorthand for this is “R0.”

    An R0 resection tends to have less risk of cancer recurrence than R1 which is where there are cancer cells found in the margins.  But there are other risk factors for recurrence that may also be uncovered during surgery and described in your pathology report.  They include lymphovascular invasion (the tumor invaded veins or lymphatic pathways), cancer cells found in resected lymph nodes, a large tumor, poor differentiation (the tumor cells do not much resemble the tissue of origin), having multiple tumors and and perineural invasion (the tumor has invaded nerve pathways).

    If you have some of these factors, a doctor may recommend adjuvant treatment even for a patient with clear margins.

    In my own case, my tumor was large, had lymphovascular invasion, and was poorly differentiated, plus my clear margins were slim in one area, so the hospital tumor board recommended adjuvant treatment.  I had both chemo and radiation.

    The evidence on the effectiveness of adjuvant treatment for cholangiocarcinoma has been sparse.  This is in part due to the rareness of the cancer and that doctors have had different approaches to treatment, so it is harder to have good statistical evidence.  The BILCAP study results (a link appears on my earlier message) seem to be significant because it was a large randomized study and showed a survival benefit from six months of adjuvant capecitabine.  There was suggestion at the time the results were announced that the BILCAP regimen might become a standard of care in the future.  It may be worthwhile asking your doctor about this study if you are considering inquiring about adjuvant treatment.

    Thank you for asking about my family. Regarding hope – there is always hope!  Please keep us updated – any information you post is of great help to other families and their caregivers.

    Regards, Mary

     

    • This reply was modified 1 year, 11 months ago by  bglass.
    • This reply was modified 1 year, 11 months ago by  bglass.
    • This reply was modified 1 year, 11 months ago by  bglass.
    #95872
    mbachini
    Moderator

    Dear Rev. Wayne,

    I too, would like to welcome you to the discussion board. I am sorry you had to find your way here, but so very happy to hear about you having surgery. I also want to encourage you to check into post surgery adjuvant treatment (BILCAP Study) with your team and see what they think. Unfortunately, this disease can have a high recurrence rate, and it is always best to cover all options. With that being said, there are also several patients who have had ongoing NED, (No Evidence of Disease).

    Three months is pretty typical for scans unless you experience any symptoms that would require taking a look earlier. Yes, you can say fart and poop on this site! Sending prayer for a good recovery and please keep us posted on your progress!

    All my best,

    Melinda

    #95871
    Wmeisel
    Participant

    Dear Mary,

    Thanks for your note.  This is all so confusing… markers, margins, grades  this all has my head spinning.

    I feel very blessed that they tell me that i have clear margins.  I am not really sure what that means although i am told it is very good 9 I feel for those who dont)  DO you know if ones margins are clean , than they don’t do any thing  like chemo or radiation , at least till they see something ?  I know your not my doctor but just wondered if you had a thought.  People like you are the ones who have given me the best advise so far.

    I do not know how this cancer has impacted you and your family , but I hope you are finding hope along the way.

    Blessings,

    Wayne

    #95870
    Wmeisel
    Participant

    Dear Hercules, aka Pat

    Thanks for calming me down .  So your saying I should not go out for White Castles for dinner . Darn

    yeah my stomach is so weird.  I know what to dress up as for Haloween ( my kids nicknamed me the “Scar”)  I dont remember the part about muscle  and scar tissue.  Now I have something to look up for tonight.

    Blessings,

    Rev Wayne

     

    #95869
    Wmeisel
    Participant

    Dear Victoria,

    Thanks so much for reaching back to me. Is is an anxious time and while there have been many folks who have come to support me, having “club members” show up and share and cheer is a whole new demention.

    your advise about excersise is well taken.  I just want to go and get my  energy ( and yes my body ) back .  I should just shut up and praise God for being alive  . I do that too.

    And yes i am confused about what to do next. I guess I should go and ask as many people as possible.  I want to avoid doing something for the sake of doing something.

    Again blessings to you and your family,

    Rev. Wayne

    #95846
    spokanemom
    Participant

    Welcome! I am so glad you were able to have surgery, and it sounds very successful. Make sure that your oncologist is familiar with cholangiocarcinoma, and is up on the latest research, such as the BILCAP study mentioned by Mary. My husband also had surgery last December, but he did not get clear margins and one local lymph node was positive. His oncologist, the entire hospital liver board, and 2 oncologists from out of town all recommended both chemo and radiation. My husband completed chemo at the end of June, and it was tough to start radiation in July because he felt so good and all the scans were clear. He also wanted to do everything he could to possibly fight this disease and felt that he should go ahead with the radiation. Radiation was really tough (he also did a different chemo drug at the same time) and he finished that at the end of August. He had his first post-treatment scan (chest, ab & pelvic CT with contrast) 2 months later, which was all clear. He will have another scan (ab MRI) after 3 months. His oncologist rotates between PET CTs (she likes best for skull to thigh), CTs, and MRIs (she likes best for detailed look inside the liver).

    Please do not start exercising until you have gotten the all clear from your surgeon. Make sure to be specific about what type of exercise and stretching you can do. Call the office if you do not have an appointment and hopefully you can get these types of questions answered without having to go in.

    My husband had his gallbladder, common bile duct, and 70% of his liver removed. He does not have any food restrictions, although he tries to avoid too much deep-fried food. He has never been a big meat eater and rarely eats red meat. He is a professor and took an entire semester off work, but that is because of the support he got from his employer and the fact that he spent 30 days in the hospital after his resection with multiple infections. Ugh! He maybe could have gone back to work 12 weeks after his resection (which was only 8 weeks after discharge) if he had to, but chemo was starting then. He was a bike commuter, but 10 months after surgery and 7 weeks after his last radiation treatment he does not have the energy to ride his bike yet. He is 43 and we have 2 children.

    I hope all this info is helpful,
    Victoria

    #95828
    hercules
    Moderator

    Welcome Wmeisel, your questions are perfectly normal and common. Eat healthy, avoid greasy fatty foods for a while, alcohol should be avoided for a while, congratulations on a successful surgery, Ten weeks is a good average for a return to work, depending on your workload, How can you fight? Get strong again, maintain your weight, exercise as you feel comfortable, don’t stress the stomach sutures, your stomach muscle is stiched up and it will always be a stitched up muscle, because muscle tissue does not heal, it will form scar tissue around the sutures however it will be held together from now on by stitches so dont pull hard on the stomach for a while, it will get stronger but it will never be what it was. That is my answer for your questions, good luck, Pat

    #95825
    bglass
    Moderator

    Hi Wmeisel,

    Glad that you found us, but sorry you got this diagnosis.

    Congratulations on a successful surgery.  Did your doctors discuss any sort of adjuvant treatment?  Many folks who have surgery follow it with chemo or chemo+radiation, particularly if the surgery revealed potential for recurrence (e.g., close margins).

    In the past, cholangiocarcinoma patients have reported that some doctors advised them that there was no clear evidence adjuvant treatment offered any benefit.  More recently, a study done in the U.K. known by the name BILCAP showed a survival benefit for a post-surgery chemotherapy regimen.

    Here is a press release on BILCAP:

    http://www.ascopost.com/News/55631

    Doctors differ on their approach to surveillance.  Scans every three months for the first couple of years is fairly common.  In my case, I asked that my CA 19-9 tumor marker be checked every month.  For some (not all) people, this marker may start to move upwards if the cancer is recurring.  Others have tumor markers and other blood tests (e.g., liver tests) less frequently, e.g., just at the same time as the scans.  Monitoring plans are generally worked out between doctors and patients, so this is an area where you should speak up if the doctor’s instructions raise questions for you.

    Decisions such as when to go back to work are unique to each person.  In my case, I went back after two months, but my job was pretty desk-bound.

    If you look around this discussion board, you will find many patient stories and other information to help inform your path.  And we hope you will join in discussions with your own experiences navigating this rare cancer.

    Regards, Mary

     

    • This reply was modified 1 year, 11 months ago by  bglass.
    #95824
    Wmeisel
    Participant

    Bad news good news.  Bad new is that I was recently diagnosed with this awful cancer; the good news is that I am still alive and talking (well writing) to you.    I am grateful for your presence, thought it’s unlikely I will ever meet any of you .  I am 58 years old, father of four boys and a Presbyterian minister.  I felt achey the last week of August.  I went to the doctor to be tested for Lymes.. than they thought i had hepititis , and than gall stones and than it was decided I had cholangiocarcinoma . UG

    I need a little help. My surgery was on September 14th and the good news is that the tumor was removed and it appears not to have spread.  When I left the hospital they said they would see me in three months to do tests and scans.  Three months feels like a loooooong time not to know anything except to try and fart and poop ( can I say those words on this site?). What should I eat and drink? When can I start exercising? When should I go back to work?  How do I fight back? I want to fight t. Just wonder if anyone else had the same feelings and what you might have done about them.  THANKS, from one of the new members

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