Discussion Board Forums General Discussion Sorry I haven’t written in a while

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    Not to be an alarmist but I do agree with Darla. If you are feeling that poorly you should not have to wait. Our doctors have never stood on ceremony. Once when Teddy got sick, fever and extreme tiredness, the doctor had him in the hospital in 2 hours time and that was with stopping for a visit to his office.
    It was a blood infection but nevertheless you should see your doctor sooner than later especially when you mention a 3 week wait.



    Have you been given anything to help control the nausea? You might want to consider getting another opinion. It seems a long time to wait when you are feeling like this. Just my opinion and something to consider. Keep us posted. I will be hoping for the best.



    Hello everyone. Just thought I would drop a post to tell you what is going on. As you may have read, I have been nauseous for what it seems like forever. I actually felt better when I was on chemo. Anyway, late last month, I started vomiting. My wife called our family doc and he said get to the ER. After some tests and discussions with my surgeon and Internal Med doc, they decide to let my Internal Med doc run tests. I was taken by squad to his hospital (Just 1.5 hours in the back of the squad). Scoped and prodded, everything seems normal. No one ran the cancer marker.

    Still very nauseous and I get very tired unexpectedly. I go for blood work on 10 Sept and see the oncologist on 18 Sept. 9 Sept will be a year since surgery

    Has anyone experienced extreme nausea and fatigue even while in remission? Is this a bad sign?


    David…..what I have been told is that everything is taken in account with the diagnoses of recurrence including, blood tests, scan results and your overall feeling of symptoms. When everything is “re-routed” such as it is with these resections it can easily become confusing because, the old “normal” is replaced with a new “normal”. Taken in account the fluctuation of test results, it is the trend of symptoms, blood results, etc. that will define your progress. Nevertheless, as Kris has mentioned, tests don’t always reveal a recurrence. Therefore, being vigilant is the most important weapon with this disease, which is exactly what you are doing. You might also want to consider eating different foods then you have before, moving around after your meal consumption, enzymes to help you digest, and making sure that you bowel movements stay regular.
    Tons of good wishes coming your way,


    Well, I don’t hear the words “bad news” here! I know I am more comfortable with Teddy seeing the ONC every 2 months as he does, just a little more security. Teddy now has 3 hernias as well and both the ONC and the Radiologist (guess I could call him the RAD Man) do not want to venture into his tummy again! He went through enough with the double Whipple. Cancer marker of 17 is not bad and sometimes it can fluctuate. Try to enjoy a good summer as a positive attitude helps. Like I always say we try to remain “realistically optimistic”.


    Met with the oncologist last Friday. The CAT Scan was normal except for the double hernia I have. Since I was opened top to bottom and side to side my abdomen ways are weak. He doesn’t want to open me up again unless the hernias give me problems.

    My cancer marker was 11 in March and now it’s 17. I told him about most of my symptoms coming back. He said not to worry. Yeah right. Not to worry. It’s so easy for people to say that when they have never gone through this. Anyway, I go back in Sept. He wants to stay closer to the three month visits then the four months.

    Well, that’s the update for now. Thank you for all your thoughts and prayers. We are sending the same to all of you.



    Hey David, just wanted to drop you a note and tell you that I’m hoping the news comes back good. So far, per your blood work readings, things are looking positive …

    Wishing you the best,


    I understand the anxiety that you are experiencing. I was feeling it last week just waiting to get a scan. I knew I would get the results the same day but the wait to get the scan was awful. I will pray that you get good results. As Kris said, if there is something then it doesn’t mean the end.. it just means another battle in this war. My scan wasn’t good and the cc has returned with a vengence but I am not giving up. We all need to fight this monster so that one day they can find a cure. God Bless,


    David, I kind of know what you mean, although my symptoms vary on a weekly or day to day basis.

    Some days I just feel great and don’t feel sick at all. Some days like today I’m completely washed out and feel bad about all the things around the house that I should be doing but don’t have the energy to.


    I just want to caution you. I had everything look ok…normal blood, clean scans and everything. But I had terrible symptoms so I had to have surgery so I could eat. What they thought might be scar tissue ended up being a thin, grapefruit sized tumor. I know that is not what you want to hear, but sometimes it is best to see the worst possible scenerio and then be suprised by good news.

    David, I pray that it is nothing. I have all my fingers and toes crossed. But if it does come back, it doesnt mean it is over. It just means you have to fight a bit more.

    I seem all doom and gloom, I dont mean to be. There are several people that had symptoms which were the result of scar tissue and other blockages. I guess you are the best person to know what your body feels like.

    I hate waiting for scan results. I am waiting 10 days to get mine. I understaand your nervousness and can only say, we are all in this together.

    Hoping and praying for your good results,


    Hello Everyone.

    I have started to have the same symptoms as I did 1 year ago except I haven’t turned yellow. The hot flashes, cramps, itching, breaking out, putting on weight for no reason, belly extending and hard, etc. I also found a lump on my right collar bone. Went to my family doctor. He ran just the normal blood work and everything was fine.

    I had my normal port flush this past Monday and the oncology nurse was concerned with my symptoms so she ran the cancer panel and other blood work. That came back in the normal range.

    So they scheduled my CT Scan and I had that yesterday. Results next Friday.

    I hate being on pins and needles. I am hoping that my body is just getting back to normal and that’s why I am having these symptoms.

    Has anyone else experienced a repeat of symptoms but everything was fine?


    Starting out, my oncologist wants me to get a CT every 4 months and do the CA-119a cancer panel. He said I would stay on the schedule for a few years maybe going out to six months then annually. My oncologist isn’t a big fan of PETs. He said sometimes they don’t pick up CC. I would do a CT every month just to catch its return early enough. It


    Thanks for the information. I heard the samething about chemo causing TMJ. Wishing you the best



    Congrats on the remission news! I have a couple of things to add from my own experience: Regarding PET scans and CT scans: My oncologist doesn’t much like to use PET scans for cholangio. He says they can show too much other unrelated stuff and can cloud the issues. He prefers CT scans as being more specific. I also understand the discomfort of getting different opinions from the same scan. When I get a CT scan, there is always a slight difference of opinion between the radiologist, surgeon and oncologist as to the meaning of the scan. (Radiologist is usually the most pessmisitic and the surgeon is usually the most optimistic.) Reading scans is an art as well as a science, so you will never get two people to read a scan exactly the same way. I always insist on seeing the actual scan and make them explain to me what they see and why they have the opinion that they do.

    While we are all thrilled to hear that you are in remission, one common thread on this discussion board is that cholangiocarcinoma tends to come back. If I were you, I would continue to get a CT scan done at least every 6 months for a long time, just to be on the safe side. If it does come back you want to find out earlier rather than later so you can continue to beat this beast!

    Wishing you many years of good health and good luck!

    Violarob in Texas


    David S
    I developed TMJ on the right side of my jaw when I started chemo and I still have it. I read somewhere that chemo tightens your jaw joint. I don’t know if this is the case with you. I have clicking for six months when I open and close my mouth.

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