Long day tomorrow

daBeachBum
daBeachBum Member Posts: 164
Hey gang,

Have a long day at Penn tomorrow. I'm scheduled for my second CT scan with contrast in the morning and then the usual doctor's visit and chemo hook up in the afternoon. This will be my first scan since they swiched out Avastin for Oxaliplatin. I will tuck in lunch with my mom and aunt in the middle.

My onc thinks things will look good based on my blood work and how I look and am feeling. I'm hoping so too ;-)

Love and strength to you all!

Ray

Comments

  • AussieMaddie
    AussieMaddie Member Posts: 345 Member
    Back at you Ray
    Keep the spirits up, Ray :)

    Sounds like you're in for a full day of things. Hopefully, things will move faster for you for being so full. My hookup to chemo is Thursday, then two more sessions next month before he puts me officially on break for a while. Hope that you scan proves to be at least as positive as mine. They found nothing at all. A big mystery! But the ascites is likely to return in time without the chemo. We'll tackle that when we get to it.

    What I don't understand is why, by now, the oncologist hasn't declared me to have Primary Perineal Cancer now that two sets of scans - the first when I was first diagnosed, and the second, including the PET scan - have all showed nothing at all, no tumours of any kind. The single thing that was proved to be cancerous was the fluid that filled my abdomen (the "ascites") and that they told me was created by the peritoneum. The oncologist is playing it safe and saying that my primary is "of unknown origin" with mets to the pertitoneum - just in case the scans aren't able to pick up just where the "primary" is.

    Anyway, it woudn't seem to alter the treatment. That's gone very well.

    Hope things look up for you as well :)

    For now,

    AussieMaddie
  • bukklvr
    bukklvr Member Posts: 4
    Good Luck
    Good Luck Ray - sending best wishes and prayers your way!

    Vicki
  • westie66
    westie66 Member Posts: 642

    Back at you Ray
    Keep the spirits up, Ray :)

    Sounds like you're in for a full day of things. Hopefully, things will move faster for you for being so full. My hookup to chemo is Thursday, then two more sessions next month before he puts me officially on break for a while. Hope that you scan proves to be at least as positive as mine. They found nothing at all. A big mystery! But the ascites is likely to return in time without the chemo. We'll tackle that when we get to it.

    What I don't understand is why, by now, the oncologist hasn't declared me to have Primary Perineal Cancer now that two sets of scans - the first when I was first diagnosed, and the second, including the PET scan - have all showed nothing at all, no tumours of any kind. The single thing that was proved to be cancerous was the fluid that filled my abdomen (the "ascites") and that they told me was created by the peritoneum. The oncologist is playing it safe and saying that my primary is "of unknown origin" with mets to the pertitoneum - just in case the scans aren't able to pick up just where the "primary" is.

    Anyway, it woudn't seem to alter the treatment. That's gone very well.

    Hope things look up for you as well :)

    For now,

    AussieMaddie

    Ascites
    Hi AussieMaddie: It's a mystery to me too. I thought, maybe incorrectly, that ascites was only associated with primary peritoneum cancer and ovarian cancer and is not a symptom of secondary peritoneum cancer from organs other than the ovaries. And as you don't have any indication of ovarian cancer according to the scans... Maybe the nodules on the peritoneum are still too small to be detected with a CT or MRI scan? The limit for certainty is about 1 cm diam.
    Cheryl
  • westie66
    westie66 Member Posts: 642
    bukklvr said:

    Good Luck
    Good Luck Ray - sending best wishes and prayers your way!

    Vicki

    Peritoneum Nodules
    Hi Ray: I know you probably answered this in an earlier post but I've forgotten (chemo brain)! Tell me again. Have the nodules on the peritoneum (from the colon cancer) shrunk or been eliminated at all with the chemo regime? If so, what chemo regime are you on again? Mine haven't changed in size or number (but then haven't increased either) under both a cisplatin/gemcitibine regime nor after 3 treatments of FOLFOXFIRI (oxaliplatin/irenotecan/5FU). Thanks! And good luck!
    Cheryl
  • daBeachBum
    daBeachBum Member Posts: 164
    westie66 said:

    Peritoneum Nodules
    Hi Ray: I know you probably answered this in an earlier post but I've forgotten (chemo brain)! Tell me again. Have the nodules on the peritoneum (from the colon cancer) shrunk or been eliminated at all with the chemo regime? If so, what chemo regime are you on again? Mine haven't changed in size or number (but then haven't increased either) under both a cisplatin/gemcitibine regime nor after 3 treatments of FOLFOXFIRI (oxaliplatin/irenotecan/5FU). Thanks! And good luck!
    Cheryl

    Had my second scan today in the morning and my onc said the preliminary results looked great and she was "ecstatic" with my scan during our afternoon session. No spread to other organs, no ascites, shrinkage of my major colon tumor and no growth of my peritoneal caking. She thinks we are on the right track with my regimen and that the lower dosages she is using with me are keeping things in check while minimizing side effects and lessening the chance of liver damage. I originally started with FOLFOX but changed things up a few months ago with Avastin taking the place of Oxaliplatin.

    I wanted to ask about the "no changes" to my peritoneum but my 82 year old mother was with me and I didn't want to worry her. I'll ask in two weeks. The contrast drug gave me the runs for a bit and some flushing, but all-in-all it was an easy day.

    Love and strength to you all :-)

    Ray
  • bukklvr
    bukklvr Member Posts: 4

    Had my second scan today in the morning and my onc said the preliminary results looked great and she was "ecstatic" with my scan during our afternoon session. No spread to other organs, no ascites, shrinkage of my major colon tumor and no growth of my peritoneal caking. She thinks we are on the right track with my regimen and that the lower dosages she is using with me are keeping things in check while minimizing side effects and lessening the chance of liver damage. I originally started with FOLFOX but changed things up a few months ago with Avastin taking the place of Oxaliplatin.

    I wanted to ask about the "no changes" to my peritoneum but my 82 year old mother was with me and I didn't want to worry her. I'll ask in two weeks. The contrast drug gave me the runs for a bit and some flushing, but all-in-all it was an easy day.

    Love and strength to you all :-)

    Ray

    Congrats!
    Sounds like very encouraging news Ray! Congrats and fingers crossed regarding the "peritoneum"

    Vicki
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member

    Had my second scan today in the morning and my onc said the preliminary results looked great and she was "ecstatic" with my scan during our afternoon session. No spread to other organs, no ascites, shrinkage of my major colon tumor and no growth of my peritoneal caking. She thinks we are on the right track with my regimen and that the lower dosages she is using with me are keeping things in check while minimizing side effects and lessening the chance of liver damage. I originally started with FOLFOX but changed things up a few months ago with Avastin taking the place of Oxaliplatin.

    I wanted to ask about the "no changes" to my peritoneum but my 82 year old mother was with me and I didn't want to worry her. I'll ask in two weeks. The contrast drug gave me the runs for a bit and some flushing, but all-in-all it was an easy day.

    Love and strength to you all :-)

    Ray

    It's great news Ray.
    I'm

    It's great news Ray.
    I'm really happy with those results.
    Keep up the good work!
    My very best wishes,
    AussieMaddie
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member
    westie66 said:

    Ascites
    Hi AussieMaddie: It's a mystery to me too. I thought, maybe incorrectly, that ascites was only associated with primary peritoneum cancer and ovarian cancer and is not a symptom of secondary peritoneum cancer from organs other than the ovaries. And as you don't have any indication of ovarian cancer according to the scans... Maybe the nodules on the peritoneum are still too small to be detected with a CT or MRI scan? The limit for certainty is about 1 cm diam.
    Cheryl

    A late reply
    Hi Cheryl,

    sorry for not picking this up sooner. It's certainly possible that the nodules on the peritoneum are too small for the scans to pick up. Something has to have caused the ascites! But so far so good. I was expecting that by the time I had the PET scan, surely something will have metastasized and be visible to the scans, but nope, not a thing. As the onc. said, it's good for my prognosis, but doesn't change my diagnosis. As far as I know it is only the peritoneum that produces the ascites and since that has so far been my only symptom, I find it hard to kow why he doesnt' just put it down to PPC. He's playing it very conservatively since peritoneal cancer is usually a met from the ovaries. When I ask him, he just says he doesn't know. It's still possible that the scans are not seeing something somewhere else, such as in the ovaries, that is too small to see but certainly I'm not having any systems except from the peritoneum.

    I'm glad at least to be free of the terrible side effects that others have endured. Hair loss didn't worry me a bit.

    Take good care,

    AussieMaddie

    xxxx