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Sorry I haven’t written in a while

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  • This topic has 107 replies, 37 voices, and was last updated 9 years ago by lainy.
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    Hi David,
    I don’t want to be ‘doom and gloom’ but unfortunately YES, this cancer can show hig CA 19-9 markers with no visual tumors on a CT scan ( not sure about PET scan).
    So you are on the right track by having a questioning attitude. Unfortunately, this is what recently happened to Rick on this board and I am aware of two others going through the transplant protocol right now with CC and no visible tumor. But on the flip side, if you consider a CA 19-9 score going from 11 to 17 as high, these numbers do not sound worrisome at all based on what I have read. Then again – this cancer sure is tricky.
    Good luck and Keep us posted.


    Unofficially, my PET scan was negative. My oncology nurse told me. I had also sent the CD to our daughter-in-law and she had her team’s radiologist look at it. He confirmed it was negative. Did more blood work today. Those results will be back Tuesday when we see the oncologist.

    Can this cancer be so small that the makers pick it up but scans don’t?

    Not sure what the next steps will be. I guess I will know on Tuesday. I would do another round of chemo before I would let them go back inside me


    David I am so glad you are having the PET today!!!! What ever the outcome at least you may get a plan of action. Honestly I would have changed doctors in the beginning or at least gotten a second opinion. Has this doctor had experience with CC? Never would we stay with doctors who talk to a patient like yours has. And to top that the docs have to fight over who is going to take care of you???? Teddy’s CA marker jumped from 11 last month to 56 this month. I knew, I just knew the monster returned. He had a PET Scan last Tuesday and the doctor called Friday and yes there is a new spot, however it is very small, so when my surgery is over next week we will concentrate on Teddy once again. LABS monthly and visits to his Oncologist every 2 months and when needed the Radiologist gets right aboard. Sorry for my negativity on your doctors but I get very frustrated when I read that doctors are treating patients that way. Are you going to a hospital that has treated CC? I am hoping for the best for you but you so need an aggressive but compassionate doctor!


    I had my follow-up yesterday with my oncologist. The CT is “inconclusive” two radiologists looked at it and said they can see inflammation. Numbers were at 64.4 last week. At least “inconclusive” isn’t bad news. More like no news must be good news.

    It’s like a light went on. I was asked how long have you been nauseous.” Reply “Look in your records. I have been this way since stopping chemo.”I am on raglan now for nausea and Ativan for nausea and anxiety that I don’t realize I have. The Ativan wiped me out yesterday. No more of that only at bedtime.

    Today a have a PET/CT at 5:00 PM. The plan after that is give the meds until next Friday to work. Blood work on 2 Oct and follow-up with results on 6 October.

    Options were discussed. If nothing is found by the PET/CT and my blood levels keep rising, my oncologist will talk to my surgeon about exploratory surgery. I am not keen on them going back inside me. Still don’t know other options. Maybe just start chemo again and watch the blood numbers?

    If the PET/CT sees something, develop a plan of chemo and or radiation. Maybe surgery. Still don’t like the idea of then going back inside me.

    That’s it for now. I will let you know if I hear anything on the way. If not, I will post again with the results and game plan on 6 October.

    Feel free to comment on what you think are options. I am all ears.


    I am crossing my fingers and everything possible for good results. Now, if we could just invent something better tasting for the contrast CT. I wonder who comes up with these flavor enhancers, anyway?
    Best of all wishes heading your way,


    Had my CT today. Results this Friday. You would think they would make a better tasting liquid to drink for the CTs.

    We got back the cancer maker that was taken this past Friday. It jumped another 17 points. I am at 64.4.

    I will let you know the CT results on Friday. Here’s hoping it’s nothing.


    Mine are, too, David.

    I’m so sorry to hear about your dog, too; that must have been another severe blow.

    With my very best wishes.




    My thoughts and prayers are with you as you await results etc,



    July 26 I was vomitting so they admitted me. A big discussion between my PCP, surgeon and Internal Med doctors on who should take care of me. The Internal Med doctor took me. No news from the EGD so must be good news.

    I had my three month check-up today. My CA-19A went up another 30. March was 11, June was 17, Sep 47. The doc felt a hard lump in my neck. He is finally concerned with my nausea, cramps and fatigue. One thing might not be much but putting everything together might. CT on Monday now. He said I can go back on the Kitril for the nausea. It helped during chemo. He also prescribed compazine.

    Yesterday we had to put our dog of 14 years down. She also had cancer. She had Hemangiocarcinoma. (Spleen).

    Not a good way to end the week. I follow-up with the doctor next Friday. I hope the worry is for nothing. If it has come back, I honestly don’t know what I will do. I don’t think I can handle another big surgery. Chemo wasn’t to bad last time. I just hate being a cancer patient. Just a big mental blow. Sorry I am going on about this.

    I will send an update next week. Thanks for listening!!


    Hi David, the only medication that helped my mom was Zophran or spelled Zofran. It worked miracles, she tried so many different combos and Zophran worked right away! The only thing is, that it is $$$ and some insurance companies wont pay for it :?/…I’m praying for you, nausea stinks!- Elicia


    Please raise some cane with those doctors. You should not be made to wait when you are feeling so bad. It is a qualitify of life issue on top of it being a health concern. We are in your corner.



    I am so sorry David, but if a doctor said that to me, I would be looking at another doctor! But that’s me. Still don’t understand why they are not doing anything.


    Try compazine. It helps me.


    Thanks everyone for the advice. The meds they gave me work sometimes. At least 4 times a week I am nauseous. It gets so frustrating to hear from the doctors “Don’t think about it” Easy for them to say since they aren’t the ones feeling poorly.

    I will keep everyone informed of what is going on. Feeling helpless and nauseous. What a great combo


    David…..I agree with what has been said already. I would insist on having a CT scan (tri-phasic (or 3-D) if possible) and a blood test. And, I would not wait. Which other physicians are involved with your case? Someone very familiar with this cancer should evaluate the tests. Also, are you loosing weight? I am sorry that you are encountering this horrible nausea and vomiting.
    Best wishes coming your way,

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