Discussion Board Forums Introductions! Just got the news….

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  • #50120
    debora
    Member

    It’s been a while since I’ve posted here. I have updates!
    So a couple months ago, we found out it shrunk! However, she can’t have any more radiation; she’s reached her max. She’s been bombarded with chemo since, but it hasn’t shrunk since then.
    She had a blood transfusion a couple days ago along with chemo. She has one more chemo appointment, then she’s off for a couple months.

    Her attitude is great, and she’s a real trooper!
    Thank you all for support!

    #50119
    debora
    Member

    I’m not sure if I could convince her to get a second opinion, but I do know that they’re doing more scans before they start with the treatment. I guess they’re double checking? Or just planning the treatment schedule according to the CC
    Thank you all so much, I don’t know where I can get better support!

    #50118
    lainy
    Member

    Hi, Debora…I am throwing my vote in for another opinion. One doctor may see what another does not. Can’t hurt anything at all. Great news that the CC has not spread. That is one big YIPEE!

    #50117
    marions
    Moderator

    Deb…I agree with Nancy in that one or two more professional opinions need to be obtained.
    Make sure to retain all medical records including, lab tests, copies of scans, physician

    #50116
    nancy246
    Member

    Hi Debrah, I would get a second opinion on inoperable. I am sure you will have people come on here and say they were inoperable and then found someone who would operate. Unfortunately, an operation is the best bet for survival. Since the cancer has not spread, I would push for the operation. Yes, radiation is a funny thing – gives cancer and used to kill cancer. Some people have had good success with it. If the chemo and radiation shrink the tumour it may be deemed operable by your surgeon. Best of luck to you and your grandma. Nancy

    #50115
    debora
    Member

    Okay, I have good/bad news
    My gran is inoperable. I think it’s because the cancer is too close to an artery? Anyways, it’s too big, but it hasn’t spread to the pancreas or deeper into the liver. They’re going to start chemo and radiation. The chemo they’re using will not cause hair loss, but I have one question; doesn’t radiation GIVE you cancer?

    #50114
    debora
    Member

    Thank you all so much for the kind wishes
    She’s meeting with the surgeon either tomorrow or the 27th, I can’t remember which, but I am still praying that it’s operable

    #50113
    lainy
    Member

    Devora that is just the best news ever. Wishing Gran a great success with the visit to the surgeon. Please let us know the outcome.

    #50112
    marions
    Moderator

    Debora…..I agree with Jim. Great news so far and my fingers are crossed for a positive visit with the surgeon.
    All my best wishes,
    Marion

    #50111
    jim-wilde
    Member

    So far, so good. Let’s hope she is a surgical candidate. That’s the best hope for a ‘cure’. Good luck.

    #50110
    debora
    Member

    Ahh, that’s good to know.
    Soooo I have updates!
    It was an ERCP they did, and they put in one stent. They said that the cancer isn’t in an advanced state, so they’re going to take it out with surgery and do chemo to make sure it’s all out. My gran’s meeting with the surgeon in about 10 days

    #50109
    jim-wilde
    Member

    My wife was my note taker. All Q & A info from doctor dialogues, future things to do, etc., etc. and any other reminder info This deal transpires over long time windows and even good memories get hazy. We often consult the notebook to recall info covered with a doctor six months ago. It prevents a lot of wasted time for all. I started a notebook ten years ago, when I was just a cardiac patient, now I am over two years with CC. We are in the periodic followup phase now and appointments are 4 to 6 months apart. I have also maintained a current meds spreadsheet, which is a real time saver for all, since I take a bunch of cardiac meds on a regular basis. This was useful when I was a chemo patient. Some people bring a tape recorder to doctor meetings instead, but I prefer a notebook. Save the venting for here or at home or keep a separate notebook for if it winds your watch.

    The endoscopy was likely an ERCP and they often place stents during it to get bile moving and eliminate the yellow man look.

    This organizational stuff just saves everyone time and eliminates errors.

    #50108
    debora
    Member

    Jim, she is going to Carbone for treatment. She just had a stent placed today while they were doing an endoscopic [?] procedure. (they look around with a camera, not sure if that’s endoscopic…) They’ll get back to us on when they’re starting treatment and what treatment she’ll be going through

    I believe my grandfather will be her advocate. He goes to all of her appointments with her and of course lives with her as well. What would he be writing in the notebook? Updates, thoughts, or would it be a personal-way-to-vent out type of thing?
    Thank you very very VERY much!

    #50107
    jim-wilde
    Member

    Debora, the only Comprehensive Cancer Center in WI is UW Paul P. Carbone Comprehensive Cancer Center in Madison. I assume that’s where your grandma is going. This is a rare disease and the best care is almost only found at the major cancer centers. Ask lots f questions, both here and of the doctors.

    Who will be your grandma’s advocate? I would suggest that person start a notebook, if you haven’t already. Good luck.

    #50106
    debora
    Member

    Thank you all for replying and giving me support. I don’t think that we’re going to start chemo, and we’re not sure if surgery is an opiton right now, the doctors haven’t gotten back to us. I do know that there is a major[ish] cancer center somewhere in Madison where she’s going for treatment and diagnosis. I’ll be sure to keep posting and stay positive ♥

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