Sorry I haven’t written in a while

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    Day 2 after chemo. Boy I felt lousy yesterday. I couldn’t believe it was bad this soon. Two years ago it took a few days. Today I feel much better.

    Last night a family member told me I was grumpy. I snapped and now feel real so bad about it. I said I am dying of cancer what do you expect. I never had an outburst like that last time. Hopefully this will be the last outburst like that. I am sure it sounded like I was giving up. That will not happen. Kicked cancer’s butt once and will continue to do so.

    Its so nice being able to just put a post up here. Makes me feel like I can really discuss things that no one else understands.

    Thank you all and God Bless each of you


    David: My husband Tom has had a ‘reoccurance’ some 18 months or so after his initial resection in June 2008. In Dec. ’09 they gave him 6 months. We have started our 12th month of life since that prognosis… just goes to show that those oncologists don’t know everything, least of all when one’s “time is up”

    You are right about the ‘bump in the road’ of this journey – we have hit many of those bumps and we just keep plugging along. No one has an expiration date stamped on their butt!

    Prayers are coming your way from Wisconsin!

    Go with God and KEEP KICKIN’ THAT cancer.



    Kris – Encourage to hear that you survived after the reoccurrence. That gives me strength. My oncologist believes that no one should be given a time limit on life. I asked today and he said I knew better then to ask. I did but still I wanted to ask.

    I am in Stage 4. I started the Gem/Cys treatment today. 6 HOURS of sitting. Glad I have a port.

    I am now eligible for 1 trail. I don’t recall the name. It is being conducted by NCI only in Ohio. The bad thing is that to be eligible for the trial, I can’t make any progress under this treatment.

    Thanks for all the kind thoughts. I beat this two years ago and like you Kris, with the Good Lord’s blessing I will be around for many years to come. This is just another bump in the road.

    My prayers have and will continue to be with everyone on this great site. It offers strength and hope.



    Wishing you strength and good luck for the road ahead.



    Hi David, while its good to see you again, sorry about the recurrance. Wishing you the best on what ever you decide to do and please keep us posted.



    I just wanted to offer my support. While new to all of this, I continue to be amazed at the fortitude, courage and strength of so many on this site (with Kris being one of the captains). Hang in there and we will all get through this together.



    I am sorry for your news. I had my reoccurance 2 years after my surgery so I know the feeling. I am almost 2 years on after that and though not as healthy as I would like, I still think there is more time and fun to be had.

    I like your attitude of it being a partnership. I think that is the only way to go. I truly believe that taking an active part in your treatment gives you a longer and better quality of life. IT is taking ownership of your cancer instead of the cancer taking ownership of you.

    Good luck on your treatment whether you decide on the clinical trial or gem/cis.



    Hello everyone. I am back and so is the cancer. We found out almost two years to the day of my post-op physical. They see four tumors throughout my abdomen.

    I have been battling CA-19-9 marker numbers in the 40-60 range since I went into remission back in March of 2009. I had my normal scans in Feb/June/September of 2010. February and June’s scan was reported normal. The September scan showed activity. They compared the September scan to June and it was there. (They missed it) Then they compared February’s scan and it was clean. I then had a PET/CT in September. It showed activity. I had another CT last Friday and they confirmed everything.

    I let my oncology team guide me through this. I see my oncologist tomorrow for the plan. I am now taking my care into my own hands. This will be a partnership from here. My surgeon is recommending a Gemzer/Cisplatin treatment. My surgeon also said I am eligible for a trail at UC. Not sure if I will op for the trail or go straight to a known treatment. Surgery is not an option anymore.

    Tomorrow is two years since my first chemo treatment.

    Well, here goes another battle.


    Thank you for all the goodness coming my way. I have my ups and downs when my doctors are involved. Your words put me at ease and help me battle this thing. All of you know how helpful you are to everyone on this site. Without support, we would be lost. Thanks again for supporting me!!


    David…your good day made it a good day for us too. Keep it up and thanks for sharing.
    Best wishes coming your way,



    David S wrote:
    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 – to answer your question, yes. The PET scan is just one tool in the evaluation doctors perform when restaging the cancer. My understanding is that PET is known for showing false positives, so it’s important for the doctor to read the PET scan in conjunction with CT/MRI, blood work, etc. Additionally, PET is known for missing the presence of tumors, so looking at the PET alone will not provide a clear picture as to what is happening.

    It sounds like your numbers are improving, and your doctor is optimistic with the overall results. That is exciting news! I will keep sending good thoughts/prayers your direction.


    That’s GREAT news, David!! :D


    Saw the oncologist today. My PET was negative (Thanks for all the prayers). My marker is now down to 24. They think that my nausea was due to the massive surgery last year to remove the cancer. They also think my stomach enzymes were causing the marker numbers to go up. The reglan they put me on has helped the nausea and the marker numbers.

    Too bad they did not listen to my complaints back in March when the nausea started. Water under the bridge at this point.

    I go back in six weeks for another blood test then back on the three-month oncologist visits.

    Today is truly a great day. A big weight has been lifted off my back. Thanks again for all the thoughts and prayers. It really helped


    Hi David,
    My husband’s ca19-9 has been going up but they believe it is from inflammation caused by obstruction from scar tissue. Of course in the back of our minds we are all worried that something sinister is happening even though MRIs show no change and actual tissue biopsies of “scarred” tumor area are negative. I’ve known people on this board that have had tumors the size of baseballs with normal ca19-9s. So it is really not an effective tool to tell whether cancer is returning. It shows “something” is happening but I have been told that people with PSC have ca19-9s in the thousands with no cancer present. I’m hoping and praying that that is what is happening with my husband since he occasionally does have bouts of cholangitis due to the scar tissue obstruction of his ducts. Don’t worry too much. Keep doing whatever you are doing to maintain negative scans. That is what the docs tell us. Best wishes. Mary

Viewing 15 posts - 16 through 30 (of 108 total)
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