Discussion Board Forums Introductions! Chemo and radiation before bile duct surgery

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  • #47134
    marions
    Moderator

    Tommy…you are welcome. Love to you and your family.
    Hugs
    Marion

    #47133
    nur1954
    Member

    Tommy – Wow, what a nice post. I wish I could have seen those Mennonite children singing – I bet it was so special! You are right, life does go on. I had a very special message today from someone who had met my son and she, also, had lost her daughter three years before John passed. She told me that she and I were blessed to have these “sparkling” children in our lives. She hit the nail right on the head with that thought! You, too, have been blessed to have Judy in your life. Keep on being strong. Best wishes – Nancy

    #47132
    lainy
    Member

    Tommy, it has not been very long but it sounds like you are trying to adjust to your new “normal”. It’s true….life goes on with or without us and I prefer to be a part of it. I have said many times now that I am NOT lonely. Between my friends, family and keeping busy I am not lonely. But I sure do miss Teddy. There is definitly a big void. I sure hope Judy met Teddy as she would just love him. He was a man’s man and a woman’s gentleman! You sound good, Tommy but don’t be surprised if you have some teary moments and its ok to let go at those times. Keep looking up!

    #47131
    tommy
    Member

    Hey everybody, just checking in. Judy’s service was beautiful. My family and I would like to thank everyone on here for all your help and advice. We miss her dearly but are so thankful her suffering is over. Thank you for the e mail Marions. Went to work today for the first time for a full day and man does it feel good. Every time I go out of the house I feel a teeny bit better. I know when I’m looking at some of the people out there that one of them has lost someone special to them and it makes my hurt go a little further away. We had over 200 people at Judys service, she cut a pretty wide swath. One of my favorite parts was when we had a group of Mennonite children sing the songs Judy picked out. They would come by the house and sing to her and she loved it. When they found out Judy had passed they insisted on coming to her memorial and singing because she was their lady, we’re not even Mennonite. Life goes on in a beautiful way. I’m no where near done hurting or crying but I know Judy would make me toughen up for our girls and grandkids, so that’s what I’m gonna do. I love you all and hope and pray for the best. Tommy,,,,,, Hi Lainy.

    #47130
    lainy
    Member

    Ritchie, Ritchie, I don’t like what is happening either! For itching Teddy used a cream called Sarna. Worked very well and you can get it at Walgreens, CVS etc. He also would use ice bags as the cold seemed to help. Like a cool shower would help for a bit. The ONC should have given you somethng for nausea, there are so many meds you could try. Press for your answers, you have the right to know what he thinks is going on. I am not so sure radiation would destroy a bile duct. I cant remember now (old age) where your CC was. I would also suggest going for another opinion. Too much, too much, with no answers. Where are you being treated? Please let us know what happens tomorrow. AND rant all you want. We all have big shoulders. Probably the only thing we have that works properly!

    #47129
    mlepp0416
    Member

    Oh I forgot! Tom also bruises VERY easily! He never had that before and it could be a side effect of some of the medications that you are on, or a side effect of chemo. When you are on chemo, your red blood cells get depleted and I think one tends to bruise more easily than not.

    Margaret

    #47128
    mlepp0416
    Member

    Ritchie:

    Don’t ever feel the need to apologize for ‘ranting and raving’ on this web site, that is WHAT it is for!!! I’ve done plenty of it in my posts as well!

    Tom never had any of the itching associated with his high bilirubin levels and at his highest, he was at 26,500! I don’t know why he did not experience the itching, but I am thankful that he did not! Even his doc’s were confused by that. He’d had a stroke in 2005 and maybe that stroke damaged the part of his brain that should have told him he was supposed to itch? I don’t know!

    However, the high bilirubin levels do become dangerous at some point, in addition to the itching, it can also cause brain confusion (which Tom never experienced either) therefore they CAN put in an external drain. Tom has a tube that goes directly into his liver from the outside wall of his chest. It is stiched into place and on the end of the tube, there is a bag that collects the bile. This tube has to be flushed daily with 10CC of saline, then a new bandage placed over the site. I wash the area daily with a antiseptic solution to help keep down the chance of an infection. I would hope that you have someone close to you who could do this for you on a daily basis as it would be hard to do yourself, although not impossible….

    Chemo would not destroy the bile duct any further than it has already been ‘destroyed’, but there are options which can relieve the itching. The external drain bag is the fastest way to relieve the itching and IF they are unable to get an internal stent in place, this may be the route that your doc’s will have to consider.

    I know that you can get some topical things at the local drug store for itching, an oatmeal bath that is used for chicken pox is one thing that may give temporary relief. There are also other ‘anti-itching’ products that you can buy over the counter, but not sure as to how much relief you would get since your itching is caused by too much bile collecting in your body.

    You will urinate some of the bile out of your system, so lots of fluids will help somewhat. Since the bile isn’t getting into your intestines like it should be, it all backs up in your system and your kidneys will flush some of it out, however that may not be enough to stop the itching.

    Tom has had the external drain for over a year now, and it’s become a part of his daily routine. Is it a nusicance? Yes of course, but since he’s had it installed, his bilirubin is at about 5,000 to 7,000 (under 3,000 is considered normal). It may be the only option to relieve your itching I fear. Along with having the external drain, Tom has to get his tube exchanged about every 4 weeks because any longer than that he ended up in the hospital with severe infections. Since they put him on a 4 week exchange schedule, he has not experienced any liver infections at all (Knock on wood!)

    Please keep us posted on what your doc’s decide to do! Tom has not had any chemo in almost 4 1/2 months now and is feeling like his normal self! He has a CTScan tomorrow to ‘re-stage’ the cancer and to look for any spread. He does have a port that was installed when the radiologist ‘saw’ a mass in his pelvic area (and that mass was gone completely less than 4 weeks later) so we don’t think it was a mass at all! And we also think he underwent IV Chemo needlessly. However, his onc says NOT because his tumor markers WERE elevated and the chemo didn’t hurt him any….(lots of questions unanswered on that one…but we won’t question it anymore).

    I’m hoping that your doc’s can figure out a game plan for you…Take this little bit of advice WRITE DOWN your questions! Else you will forget them! Buy a digital recorder ($40 at Radio Shack) and record your visit with your Onc. Then play it back and listen to it after you get home. If you have ANY questions after listening to it, then RE-ASK your onc!

    Go with God and KEEP KICKIN’ THAT cancer.

    Hugs,
    Margaret

    #47127
    ritchie
    Member

    Dear Margaret,

    Thanks for the post.

    As shown by an ERCP, I had one fully operational duct, then I had radiation. Now my itching has greatly increased, and red blotches (as well as bruises) are forming on my skin. I’m afraid that the good bile duct has been destroyed.

    Tomorrow, I am to see my oncologist. I’m going to ask what my options are, and plan to refuse further chemotherapy until some satisfaction can be given to me as to why things are going downhill so quickly. I’m going to ask for another MRI or another ERCP. Something, that will show why things don’t seem to be getting better at all. I think that I’m going to ask for a stint or something to decrease the itching. Right now, my quality of life has gone to pot, and I don’t believe its directly due to the CC.

    I started out with one good bile duct and no evidence of cancer anywhere else. They said they couldn’t put in a stint during ERCP because I was throwing up.

    Now I end up itching worse than ever (by the way you don’t happen to have anything good for itching do you?), increased nausea, weakness beyond belief etc. etc. etc. I don’t mean to complain, I have so very much to be thankful for, but I got on a roll there. Forgive me.

    Perhaps I am wrong, but even before you wrote I was thinking that the radiation had destroyed the good bile duct. If so I’m “pissed”. Pardon my language. I know that it would have happened sooner or later anyway, but they said that it was slow growing. Go figure!

    I’ll stop bugging you, but I want you to know how much your information helped me to think that I’m not completely “out of it.” That perhaps there’s more to the way that I’m feeling than my imagination.

    Sincerely,
    Ritchie

    #47126
    mlepp0416
    Member

    Ritchie: Before Tom had his radiation treatment, his radiation doctor did not discuss with us the fact that the radiation ‘might’ destroy the bile duct. And we do not know for certain if radiation did destroy it. At this point all we know is that the new tumor was inoperable. And the only way to kill the tumor was radiation since surgery was not an option. I only wish that they had tried to get a stent into that portion of the bile duct BEFORE they had done chemo. It is unfortunate that they did not think of that before radiation! It is possible also that the tumor had already destroyed the bile duct (we will never know for sure now)…so my suggestion is before undergoing radiation one should request that a stent be placed prior to radiation. That should (?) resolve the problem BUT one should also ask what would effect would radiation have on a stent? Could it fuse the stent to the bile duct? Arghhh, so many questions that I can think of, now, after the fact!!!

    But we will never get the chance to do this again, so we live with what we have. One now 64 year old man with Cholangiocarcinoma who underwent a left lobe resection, who re-occurred with an inoperable tumor and who now has an external drain and who has entered the 16th month of life AFTER being told he had 6 months at the most to live. So thank you very much Mr. Oncologist, but my husband has proved you wrong and these extra 12 months that we got to spend together have been a wonderful memory building time for us!

    And 2nd, 3rd or more opinoins ARE important. Just think, if we had listened to Mr. Oncologist, Tom would not be here today!!!

    Go with God, and KEEP KICKIN’ THAT cancer.

    Margaret

    #47125
    lulu07
    Member

    Hi Linda….I had my CC surgery Jan 2010 right lobe of my liver removed along with my gallbladder and bile duct resection. Surgery went well and I had no post op problems…on March 1st of 2010 I started 6 months of adjuvant chemotherapy. I went on Mondays and Tuesdays every other week so 4 days out of the month. I was given 5 different types of chemotherapy I have a double port which made it so much easier. I can’t recall all of the meds although I know I did receive Gemzar,Irontecan,Leucovorin,Eloxatin, and Fluorouracil. Also, a host of anti-nausea meds which all were distributed through the port. I tolerated the chemotherapy very well….just some hot flashes and weight gain which I think can be attributed to the steroids. I finished chemo in August of 2010 it is now March 2011 I had my 1 year scan in Feb and all was clear. The only lasting effects I have from the chemo is some neuropathy in my fingers and feet a very small price to pay. I will agree that the health of the patient when beginning chemotherapy has a lot to do with how well the patient handles it. Most importantly though please, please remember to bring a positive state of mind. I wish you nothing but success with your chemotherapy. Please keep us updated on your progress.
    Nancy

    #47124
    lainy
    Member

    Hello Linda and welcome to our wonderful family but sorry you had to join. Congratulations, you are already a survivor! I can’t help with your particular question but may I suggest you post this under Introductions? I am afraid it may get lost on this older thread and I do want everyone to meet you and I just know you will get some answers to your question.

    #47123
    dacks
    Member

    Hi, I am Linda. Had CC surgery Jan21,2011{the left bile duct and 30% of my Liver removed. Has anyone had experience with chemo-therapy and radiation treatment following surgery?

    #47122
    charlea
    Member

    Ritchie, just to illustrate how different everyone is on this site. I am 67, had a 10.5 cm tumor in the left lobe of my liver and two positive lymph nodes in my abdomen (proven by biopsy). My surgeon stated I was not a surgical candidate, or rather that a surgery of that magnitude would be extremely hard on me and would not be a cure since my CC had already metatasized. We tried chemo which had absolutely no effect, and then I had a chemoembolization directly to the tumor which did kill the tumor. The lymph nodes have not enlarged or spread at this time which the oncologist said was due to the indolent nature of my CC. The tumor could re-grow and they could do another chemoembolization depending on how I’m doing. I still have a port in (for luck as my oncologist said). That way if my tumor started growing again I could try another chemo. I wish you the best in whatever you do. Just make sure you are armed with as much knowledge as you can gather and this is the place to find the information you need.

    #47121
    lainy
    Member

    RITCHIE, what do I really know, but the urgency here could be the spread of cancer and location like Marion stated. I do know that what is happening is a mountain to absorb. IF you have any feelings that this does not feel right to you, you may want to get one more opinion. Where are you located? Have these doctors had experinece with CC? We do know how you are feeling right now, but honestly once a game plan is in place you will begin your fight and will feel better as you charge ahead. Best wishes to you.

    #47120
    marions
    Moderator

    Ritchie..I am not a physician therefore; I can only pass on what I have learned so far. The way I understand it, your surgeon is looking into de-bulking the tumor prior to surgery. Although, some CC patients appear to have the slow growing type of cancer whereas others experience the opposite. The more pressing issue is the location of your tumor and the believed spread of the cancer.
    Ritchie, when visiting with physician I always made sure to have a tape recorder or, a note pad. It never was possible for me to recall the amount of information given.
    Regarding chemotherapy: unfortunately, in order to kill of the cancer cells, other, healthy cells also are compromised. Success varies from person to person, as do side effect; only your oncologist will be able to tell where your specific risk factor lays. Margaret may also have some more information to share with us.
    You might also want to ask the reasons for the urgency of immediate treatment.
    And, lastly you may want to inquire as to how many CC patients have been treated by the physicians?
    Also, by Riverside: do you mean Riverside, Ca?
    Hopefully, others will come along and share their thoughts with you.
    All my best wishes are coming your way,
    Marion

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