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Viewing 10 posts - 31 through 40 (of 40 total)
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  • in reply to: Lymph node puncture test #18975
    candyz
    Participant

    Hi Kris,
    hope you got through the day ok…sounded like a lovely way to spend a Friday…not.
    candy

    in reply to: Pain from external drain-is this normal? #18822
    candyz
    Participant

    turns out the drain was plugged and leaked all over and then he felt better! he’s in the hospital now, had a bigger tube put in and they’re just keeping him to see if everything is ok. He is looking so much better and stronger yesterday and not in much pain now, so I’m happy! We had a talk with the doctor and he said he can’t promise anything, but wouldn’t even be considering putting him through the surgery if he didn’t think there was a chance to get it all.
    I’m so very thankful to all of you and this board…I’ve been able to tell my brother some of your stories and responses I’ve gotten and he can’t wait to get online himself, so you’ll all be meeting him soon! Being able to hear that these drains can be problematic, but still work, helped alot.
    candy

    in reply to: External drains-long term? #18842
    candyz
    Participant

    Thank you Kris, I will pass that info on to my brother. He’s been pretty worried about how much pain he’s been having since it was put in.

    in reply to: What to know before surgery? #18838
    candyz
    Participant

    thank you all. my brother is still trying to deal with the blow of doctor’s diagnosis, and I’ve tried to give him as much support as possible but yet let him know what the real options are. I’ve told him that surgery isn’t seen as a cure, but that I’ve seen people on these boards who have had significant time after surgery. I have a number for another top doctor with University Hospitals..Dr Christopher Siegel-anyone heard of him? Planning to call tomorrow am if my brother wants me to. Tonight he is back in hospital after having his drain leak all over the place. We’re waiting to see what they do for this and I’m hoping he doesn’t have any more complications. Sounds pretty common from these boards…It sounds to me also from these boards that if a surgeon is willing to proceed with surgery we should say yes if there’s any chance that it gives him quality time. That’s the hardest question.

    in reply to: Pain from external drain-is this normal? #18820
    candyz
    Participant

    Kris, so sorry you’re having probs with the drain. It’s hard (and probably not possible for he or I) to determine if the pain he’s having is from the drain, or from the disease. I plan to call the doctor Monday, anyway, because we need to get moving one way or another. Doctor said he’d go forward with surgery (or at least the lap) so we need to talk to him and set the preliminaries in motion. Meanwhile I’m going to try and talk to Ireland Cancer Center and see what they say. Good news is my mom and dad are home and it was good to see them. They’re going to take my brother to his church tomorrow (first time he’s been out of house since the drain put in). I was going to and didn’t mind, but it’s nice for all of us that they are.
    Good luck, hope you don’t have to go in this weekend!

    in reply to: Pain from external drain-is this normal? #18818
    candyz
    Participant

    Thanks everyone. I was all ready to get him to a hospital today and he said he was doing better and didn’t want to go. His friend stopped by and he got up, washed up, changed his clothes and finally capped the drain. Said he felt better after that. We think he was really dehydrated as all fluid going straight out to the bag. Said his urine was better color too. So I didn’t push it although this evening he sounds so down. I hate to tell him but the surgeon told me today that he really thinks we got this late and there isn’t much we can do. He said the oncologists probably won’t even take him on because there isn’t any physical “proof” to confirm the diagnosis, but he’s very sure this is it because it can’t be anything else. This surgeon is the Cleveland Clinic’s liver transplant specialist. He’s offered to try surgery but really without hope. Just thinks that doing the laparoscope, which they would do before the surgery, will give us the final diagnosis and then we will have easier time accepting that we tried. I have to tell my brother, too, tomorrow that my parents will be here soon. I had to tell them to come home because I need help and they need to be here with him. (can you believe I had to do that!) anyway, he doesn’t want them because of Mom’s drama and negativity, so he might not be happy I called them. I’m going to make some calls tomorrow to the big cancer center here and see if anyone will talk to me. I so appreciate this site because it’s useful to have a place to go to. Can anyone tell me what has helped keep your attitude positive and fighting in the face of this awful disease? I’d love to suggest that he and his kids (and me if he wants) take a mini trip somewhere to build some memories, but am afraid we don’t have enough time for even that.

    in reply to: Pain from external drain-is this normal? #18816
    candyz
    Participant

    thanks, I’m going to take him in tomorrow, he’s running a low grade fever today, too. He’s dehydrated and just not doing as well as he should. He’s so weak I’m really worried. The doctor was agreeing do a lap with the possibility of recision, but I don’t think he’ll be a candidate because he’s going downhill so fast. I don’t live with him (1 hr away) and his ex wife and I are making sure either she or I see him every day but I think he needs more care. He’s not making himself get up and around enough because he hurts so bad. Oh, I hate this cancer, he’s too young. I think it really set in yesterday how real and ugly his situation is and it was so hard to see. I don’t know how to make him better.

    in reply to: Gemcitabine with 5-FU Push #14834
    candyz
    Participant

    My brother is having procedure today to try and stage him…does anyone know how strong the Cleveland Clinic is with treating this disease? We’re wondering if we should be looking elsewhere?
    thank you!
    Candy

    in reply to: Staying Positive #14713
    candyz
    Participant

    Hi, my brother is just now being diagnosed (he goes tomorrow for a procedure where they will place a needle percutaneously, place a stent and get images to see how extensive the malignancy is.) We live in NE Ohio and he is going to the Cleveland Clinic. I’d love to hear of any experiences with the Clinic since I want to make sure we’re at the best possible place for treatment. Dr. Vogt seems pretty good, but I can’t find any statistics for him or this disease related to the Clinic. Any advice? Thanks,
    Candy

    in reply to: My brother was just diagnosed @ age 44 #18640
    candyz
    Participant

    thank ou so much for your reply. I was planning to ask him if I could take on the insurance and medical bill review, but the other things are great suggestions too. We should find out Friday if he is a candidate for surgery or not, although the doctor didn’t seem to have high hopes. I keep trying to keep positive since his CEA and CA19-9 were fine and his biopsy was negative, but the doctor also said that doesn’t mean anything. My parents are very selfish but have said they’ll come home if they need to. It’s bad, obviously they would be needed now rather than the permanent vacation they are on, which they could resume later or take smaller trips more often. My brothers children are teenagers, not driving yet, but they live with his ex-wife so there isn’t a real care issue, just a coping issue.
    My prayers are with you as well, it seems like you’re diagnosis might be fairly recent? What kinds of treatment have you had? How do you feel? I can’t really imagine how difficult it would be to manage this disease as well as raising children; I had very early ovarian cancer when my girls were 4 and I was incredibly lucky and am fine now. The thoughts and worries that I had about my family were so difficult; I do have a very loving husband who has been my rock. I only hope he can handle what I’m going to need to do to take care of my brother.

Viewing 10 posts - 31 through 40 (of 40 total)