Discussion Board Forums Introductions! Just in Shock!!!

Viewing 15 posts - 1 through 15 (of 59 total)
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  • #35694
    ronidinkes
    Member

    Dear Jeff and Mark,
    I embarked on this journey 1 year ago with my mother. She had the whipple, and it has been a very difficult recovery for her. She refused chemotherapy, but did radiation. Just know we are here for you anytime. Sending lots of hugs your way.
    Warm Regards,
    Roni Dinkes

    #35693
    mlepp0416
    Participant

    Thanks Lainy, Jeff, Marc and I were/are friends on Facebook, that is how I got the news.

    Go with God.
    Margaret

    #35692
    lainy
    Participant

    Unwanted news, but thank-you Margaret. My prayers and sympathies go out to Jeff for his loving partner Marc.

    #35691
    mlepp0416
    Participant

    I Just wanted to let everyone know that Jeff Grieder’s partner in life passed away from Cholangiocarcinoma – Marc Wynn Mecklenburg, October 19, 1954 – July 16, 2011.

    He is gone but not forgotten.

    Thank you to everyone for their support of Jeff and Marc.

    Margaret

    #35690
    jeffgrieder
    Member

    WOW… That is great to know Pam. Cool thing is we are already in stock of Biotene here at the house. My Mom, who lives with us, uses it as well. Talk about being prepared!! :)

    #35689
    cherbourg
    Participant

    Susan and Jeff,

    One of the things recommended to my Mom was the line of mouth products called “Biotene”. They have a toothpaste, mouthwash etc and they worked very well for my Mom. We found them at Walgreens, Walmart and Harris Teeter (a grocery store).

    Also Mom was given excellent patient support from the actual drug companies. Nexavar and Xeloda were very good with patient support and information. Hope this is helpful.

    Hugs to you both!

    Pam

    #35688
    gavin
    Moderator

    Hi Susan,

    Welcome to the site and thank you for sharing your Gem/Cis experiences with us all. I know that that will help many. I hope that you will keep coming back here as you will get a lot of support from everyone here.

    I can so relate to what you say about bickering and trying to clear the air immediately and I agree that clearing the air straight away is very good. My mum was diagnosed in 2003 with COPD, and my dad diagnosed in 2008 with CC and I was my dads carer and am still my mums carer. My mum is small in size, but has a mean tongue on her and can argue with the best of them! When we bickered and still do, she says her piece, I say my piece and then we argue some more. Then we both move on as we have cleared the air and that is that. I think it is good sometimes to vent our anger, frustrations, thoughts and feelings and that by doing so, it gets everything out into the open.

    My best wishes to you,

    Gavin

    #35687
    susanl
    Member

    Jeff, I wanted to address your worries about Marc’s chemotherapy. You should both find out as much as possible about the chemo drugs he will be given, their possible side-effects, and what to do about them (including which ones should be reported to your physician).

    I’ve been lucky with the Gemcitabine-Cisplatin treatment that I’m on, and so far, I’ve experienced a sore tongue and few little mouth sores and fatigue. Fortunately, my oncologist’s orders include my being given anti-nausea medication before the chemo drugs and taking it for three days after. I actually eat better on those four days than I do the rest of the time. The sore mouth was because I got behind when symptoms first appeared, rather than rinsing my mouth with soda water frequently over the first few days (this works as well as salt or baking soda solutions and is much more convenient).

    Best of luck to you both, and be sure to keep your lines of communication open. My husband has been wonderful, but I have to be careful that he’s not getting too stressed with all the details of everything he’s taken on

    #35686
    betht
    Participant

    Jeff
    I have been reading your posts and it brought me back to 6 months ago whan my husband was diagnosed. (stage 3 CC non-rescetable) The beginning really is a roller coaster. I talked to a DR/friend of mine and she said that it usually takes a month and then you reach a point where it is easier. I found it to be true for me.
    I hope chemo goes well tomorrow and that his bili stays low. Art was in the hospital a lot in the beginning with infections from his drains (he still has two external drains). Thankfully that hasn’t happened in 3 months. He is doing very well now and works all the time. He has taken well to chemo and his first scan revealed a reduction in the tumor.
    I don’t have any real advice to give that you haven’t already gotten. I just wanted to let you know that there is a family thinking of you and yours, here in Ohio.
    I’ll be looking for your updates!
    Here’s to rescetion on the horizion!
    Beth

    #35685
    daddysgirl-2
    Member

    Jeff and Marc, just wanted to chime in with a warm welcome from chilly northern minnesota. Sorry you have to be here, but so thankful you found this panel. My dad was diagnosed with CC at the very end stage. I wanted to comment about your frustration on why this couldn’t be found with early detection. This was always my frustration, as well. Dad also had diabetes which meant he was getting his blood tested every other month, not to mention liver and kidneys tested. Still, nothing was ever detected.

    Jeff, you sound so very strong and positive. This will serve you, and Marc, well as you begin this journey. You both are in my thoughts and prayers.

    Peace be with you,
    Jolene

    #35684
    devoncat
    Participant

    Jeff,
    Hans, my family and friends have all fussed at me at least once because I want to do things like move the china cabinet. Sometimes you just want to feel normal. There is a fine line between me pushing myself too hard and just giving up on living a normal life. Dont worry too much. Marc, like the rest of us, will start to learn to live within the new limitations. It isnt always easy (for either the patient or the carer), but it eventually will come.

    Take care.
    Kris

    #35683
    sara
    Member
    jeffgrieder wrote:
    Well, we discussed it and he is going to wait another week to go back to work. He is still a little weak and thinks he can move mountains. For example, the China Cabinet. I just can
    #35682
    marions
    Moderator

    Jeff….I like your idea and have e-mailed you.

    Best,
    Marion

    #35681
    darla
    Participant

    Lainy,
    That sounds like a plan! I think you should go for it! :) If Jim were still here, I would consider going with you, but then again, if Jim were still with me I probably would never have met all of you wonderful people. I guess there is some good to be found in even the hardest of times.

    Jeff,
    We tried condos, all inclusives, etc. but cruising was the best. A cruise to benefit the CC foundation is also a good plan! Tell Marc to take it easy and that goes for you too!

    Darla

    #35680
    jeffgrieder
    Member

    LOL… I LOVE CRUISING!!! And I love my job. And with my history in fundraising and my new connection with CC and the foundation, I should put together a fundraising cruise for the Cholangiocarcinoma Foundation. Something to consider.

    Thank you all for your support. Enjoying having Marc at home!

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