joolz822

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  • in reply to: Do you always have pain with CC? #49098
    joolz822
    Member

    It I don’t take my pain meds, I have pain at about a six. So I’m very diligent about taking the pills. I have two large tumors in my liver and they are pressing against the liver wall, hence the pain. Occasionally the tumor in my lower spine acts up as well and radiates pain around to the front of my abdomen. I don’t think I’ve had any reaction to my enlarged lymph nodes.

    in reply to: chemotherapy #49390
    joolz822
    Member

    I don’t know where you live but I’m here in Northeast PA and have been going to Fox Chase Cancer Center. I’ve been going through elaborate testing to find out whether I qualify for treatment with Spheres. It’s a research study and I have a few more tests to have before they make a final decision.

    Gem/Cis did not work for me.

    I have two large tumors in the right lobe of my liver along with a number of small ones. There’s also a tumor in my lower spine and my lymph nodes have been compromised.

    A transplant is out because of all the other tumors and lymph nodes.

    My advice is to find a large teaching hospital that has a cancer department. There are quite a few out there. We have a a discussion section on hospitals.

    Good luck to you and your wife.

    in reply to: People who just don’t get it #49146
    joolz822
    Member

    After reading these posts I feel very fortunate. None of my friends/family have deserted me, in fact they are all making an effort to really be here for me.

    Quite possibly the ones who have stepped away don’t know how to react/act with you. Cancer is a very scary thing and and some folks just don’t want to deal with it. That’s a shame because they aren’t the ones who actually have the damn disease. It’s a very selfish reaction.

    Write a letter, send emails. Try just another time and if you don’t receive replies just shrug your shoulders. It’s their loss.

    Good luck.

    joolz822
    Member

    I was diagnosed with Stage 1V on December 2010. Non-operable. The tumors did not respond to the gem/cis treatment so I’m enrolled in a clinical trial that begins April 27. Hopefully it will slow the tumor growth down.

    Sorry you had to find us.

    in reply to: Do you always have pain with CC? #49090
    joolz822
    Member

    I have pain at least once a day. The two big tumors in my liver are pressing against it. Yeah, it hurts. Sometimes the tumor in my spine starts to radiate pain from the back to the front of my abdomen. That;s very uncomfortable. I got some new pain meds from the onc today so I’m hoping they will help.

    in reply to: starting treatment #49025
    joolz822
    Member

    Nurse 33 – I would come home every day from treatment and have to take a nap. I give a lot of credit to the people that actually went back to work after their radiation treatment. I don’t like to be driven but I had to have my husband motor me back and forth from treatment as time went by.

    in reply to: Our life with cancer #49012
    joolz822
    Member

    Nancy is correct. I was only suggesting you look into it, not move him in this very second.

    I’m thinking of giving them a call for myself even though I’m not ready to check out. Just something else to organize.

    in reply to: my uncle #48633
    joolz822
    Member

    My sincere condolences.

    in reply to: Our life with cancer #49007
    joolz822
    Member

    You certainly have received more than a second opinion. Unfortunately if they’re all saying the same thing, you know that’s more than a ring of truth in it and for that I am sorry. I just started to go to Fox Chase Cancer Center in Philadelphia PA. If all goes well I’ll be in a clinical trial which begins late in April.

    You should get a hold of your local hospital and/or your Onc for hospice information. Your husband may not need it now but it’s easier to have everything in place for when you do. Sometimes you just have to be practical.

    Glad you found this forum. There are a lot of folks going through difficult times and it helps to share.

    Good luck!

    in reply to: starting treatment #49017
    joolz822
    Member

    What an ordeal! Good luck with the chemo… what are you going to be taking? I’ve found that chemo is easier to deal with than radiation. But I’m sure many others have found just the opposite.

    in reply to: Genetic Testing #48790
    joolz822
    Member

    I found out I had CC when my 7 1/2 month “cancer free” MRI was being read. I was treated for liver cancer before that… had my left lobe taken out and supposedly all the tumors were gone. Well they came back with a vengeance. Besides whatever is left of my liver being inundated with tumors, I have a tumor at the base of my spine. I cannot be operated on. Gem/cis did not work. Hopefully I will be accepted into a clinical study with Sir-Spheres.

    Previous to my liver cancer, I had anal/rectal cancer where they took out a huge tumor and gave me a permanent colostomy.

    It’s been quite a haul since May of 2009.

    in reply to: Mum just been diagnosed #48987
    joolz822
    Member

    Write your questions down and ask your Mom’s doctor. Take notes. In fact, begin a notebook where you can keep things organized. A lot of us do that.

    Sorry you had to find this forum!

    in reply to: Met with the Dr… #48866
    joolz822
    Member

    If this is a harbinger of how things are going to go… the Study Coordinator called me today and said she can’t get my CT results because they weren’t ordered by an on-staff physician. Oh, I said, it was most certainly was!

    Am I just being silly? Is this just a fluke or the way things are going to be?

    in reply to: Newly diagnosed father #48886
    joolz822
    Member

    A med spread sheet – great idea! I should make one beginning with what I’m taking now.

    in reply to: Met with the Dr… #48864
    joolz822
    Member

    If anyone can change the formula for barium and make it palatable, they’d make a mint.

    So the CT scan was done today. No biggie except for the barium. I imagine I’ll hear results from this and my blood tests in a few days.

Viewing 15 posts - 1 through 15 (of 55 total)