Becoming a patient… Round 2

Discussion Board Forums General Discussion Becoming a patient… Round 2

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    Kris, remember when we went for that horrible Chinese Dinner???? UGH! Lets go back and maybe that will scare the CC out of you!!!!


    Thanks for that info. I know Oxaliplatin is too toxic for me, so maybe that is an option.
    My ca19-9 is still at 40, so it hasn’t gone up. My bilirubin is also only .6. None of my blood work levels have changed much. So I’m not sure why it’s growing and spreading, but it is… Hopefully I find something soon!


    Sorry to read that you have to fight again but you sound strong and positive so I beleive you will fight it off again.

    I saw where your doctor was check on other medicine to go with 5fu. I go to MDA for treatment and my doctor had me on Leucovorin, Irinotecan (camptosar) and I wore a pump for 46 hrs with 5-fluorouracil (adrucil). I haven’t read of this combination so I don’t know if it is something you have tried before. The first 6 cycles took my CA-19 from 7227 to 2398. The second 6 cycles everything stayed the same so they have me on maintenance with xeloda right now. My dr at Anderson is Dr. Shroff if you are interested in this combination.

    Best of luck and I’ll send prayers and good thoughts your way.


    I’m sorry you are facing this again. Sending strength and warm wishes – sounds like your doctor is doing anything and everything to pick the right combination for you, which is fantastic. Like Catherine said, I hope you find yourself back in the “chronic patient” stage VERY soon!!




    So nice to see you back, but it would have been fine if it was just to say hi. So sorry to hear the gloves have to come back out.

    I hope it’s an easy and quick course back to the chronic illness patient.

    Best wishes,


    Well, here I am again in the patient role. I really enjoyed the 2-1/2 years of being a pill popping chronic illness patient. Now to get back to fighting again.
    The last ct scan showed new growth in lymph nodes and indeterminate “lights” that are too small to guess at. So the work begins.
    First, I am off the clinical trial. I did post that part on my clinical trial section.
    In the past 24 hours I was given the bad news, met with my radiologist, received calls from my onc today about trials, scheduled an ekg for tomorrow, a pet scan for Friday, and a biopsy for Christmas Eve morning! I’m tired! I forgot how much time this takes. And I start a new job tomorrow afternoon. First day on the job… Oh, I’m sorry, I need some time off… Great timing, huh?
    On top of that, I’ve been overwhelmed with a good friend on hospice. I’ve been fighting a cold so haven’t seen her the past few days, but she’s fading fast.
    And my mom was just put on hospice in Alabama, too far for me to help. And I won’t be there at Christmas because of my new health issues and the new job. I told God that his timing sucks.
    I’ve spent most of the day on the phone setting up appts. and need to get my calendar book up and running again, I guess.
    I still feel fine, and at least I get to look forward to finding my ankles again! And losing the puffy eye look. Such an attractive look!
    We are looking into trials or radiation first. Gem/Cis will be the next option. Gem/ox is my last choice because I still have a bit of neuropathy so I figure I won’t handle too many infusions. Dr. Denlinger is looking at 5fu paired with other drugs. We’ll see what she comes up with. She’s also reaching out to MSKCC and Georgetown for suggestions.
    That’s all for now. My big girl panties are on and I’m lacing up the gloves.

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