My Husband and Cholangiocarcinoma

Discussion Board Forums Introductions! My Husband and Cholangiocarcinoma

Viewing 15 posts - 226 through 240 (of 285 total)
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  • #34423
    gavin
    Moderator

    Hi Margaret,

    I am glad to hear that you and Tom were able to get out today for a while and it sounds like you both had a good day. And yes, these burgers do sound good! I do like a good burger! It does sound like this was a great way to lift your spirits.

    I hope you enjoy the rest of your day and your burps! And my best to you both,

    Gavin

    #34422
    mlepp0416
    Participant

    Thanks Gavin, Lainy and Katie. We were able to get out and take a ‘road trip’ to Marinette Wisconsin, about 35 miles from where we live. We had some awesome burgers at a little mom and pop resturant called “Micky Lu’s”. Charcoal Grilled burgers and coffee, what a way to life the spirits! And our Wisconsin weather, can you believe it’s about 45 degrees today! We’re back home now and will be ‘burping’ Micky Lu burgers for the rest of the day…Darn they were good.

    Go with God and KEEP KICKIN’ THAT cancer.

    Margaret

    #34421
    gavin
    Moderator

    Hi Margaret,

    I hope you and Tom had a better day today and that the weather was okay so that you both can get out of the house with each other. I am sure that if you can get out for a bit then the fresh air will do you both some good. I hope you managed to get some sleep and are feeling a bit better also.

    Don’t give up hope, stay positive and keep kickin it!

    My best wishes to you and Tom,

    Gavin

    #34420
    lainy
    Participant

    Hi Margaret! Ya know, sometimes even Kick’in people need to rest their legs and regroup! Knowing Wisconsin weather I am sure some bright sunny and warmer days would help. Wish I could send you some but we jsut had ur week of cold, rainy winter out here. Keep your spirits up and the legs will start Kick’in again!!

    #34419
    katieloumatt
    Member

    Margaret,

    Thinking of you and Tom and hoping today brings a better day for him.

    Katie

    #34418
    mlepp0416
    Participant

    Thank you Maebas2 for your kind words of support. This is a battle that I wish no one would ever have to fight! I find myself coming back over and over to this site because it give me the will to continue.

    I have found many new friends on this site and will continue to visit and hopefully one day we will be able to announce that there is a cure for CC, or at least a way to detect it early and successful treatment for it.

    Tom has been spending a lot of time sleeping and I think he is just plain worn out from the radiation. I see despair in his eyes and sadness. He is not loosing weight, but loosing muscle tone and he just looks so skinny that I wonder how long he can keep battling this terrible disease. Today was a day when we didn’t do much at all, just spent time together, he on the couch sleeping and even I managed to take a few ‘cat naps’ to catch up on some sleep.

    Tomorrow should be a better day for him and maybe we can get out of the house for a few hours and get a new perspective!

    Love to you all.

    Go with God and KEEP KICKIN’ THAT cancer.

    Margaret & Tom

    #34417
    maebas2
    Participant

    Margaret,
    Support and prayers are being sent your way from San Diego. Continue to stay strong for your husband and yourself. Its been a battle from day one and we can never stop fighting. Keep KICKIN’ CC. Cancer does not have us! God Bless to you, Tom & your family.

    #34416
    mlepp0416
    Participant

    Thank you Lalupes! We are certainly trying! There are days when Tom is so discouraged that I sense that he wants to give up, but he tries to keep positive for me. I have my work as an outlet, but he sits at home day after day, alone. I am getting closer to ‘work at home’ (they are installing the voice line on Monday) so once I’m working at home it will be better for him. He won’t feel so isolated.

    Go with God and KEEP KICKIN’ THAT cancer.
    Margaret

    #34415
    lalupes
    Participant

    You keep on kicking, kicking, kicking, Margaret & Tom!!!

    #34414
    gavin
    Moderator

    Hi Margaret,

    Yes, more good news! I hope the downward trend continues for Tom and that you keep kickin it bigtime!

    Best wishes to you both,

    Gavin

    #34413
    lainy
    Participant

    Margaret, all good news. I think giving your hair to Locks of Love or etc. is such a commendable thing to do, love your generosity. You guys keep Kickin and we are going to meet in July. That is our goal. We will all have our Cancer dance at that time!!

    #34412
    mlepp0416
    Participant

    Hi Ya’ll!

    I found out what Tom’s Tumor Markers are. Apparently normal is between 0 – 37. Three weeks ago his were 466, the next week they were 353 and last week they were 336. Yahoo! They are on the downward trend just like his bilirubin level (24.7 two week ago and 22.7 last week)

    Hopefull this downward trend will continue and we’re thinking that this means that the radiation is shrinking the tumor! When they can get the liver stented, his color should return to normal and he can get started on the Chemo.

    I know Tom is anxiously awaiting that little bottle of pills sitting on the shelf that cost $1,500.00. Six pills in the morning and six pills in the evening. I’ve never had to be so close to anyone who is on Chemo, but from what I’ve been reading on this site, it can be quite the adventure. I’m up for the challenge and I’ve already warned Tom that if/when he starts losing his hair, mine is coming off as well. (I have long hair down to the middle of my back) I never realized that his hair meant so much to him, but he said “I spent 62 years growing this head of hair and I’d like to keep it.” I plan to buy a ‘do-rag’ and wear it after I donate my long hair to “Locks of Love” or “Wigs for Kids”.

    At that time I will be working from Home so it won’t be so bad and it will grow back! Maybe I’m just a little bit crazy, but it’s the least I can do if Tom starts to loose his full head of hair!

    Go with God and KEEP KICKIN’ that cancer!

    Margaret

    #34411
    gavin
    Moderator

    Hi Marion,

    Thanks for that. Yes better diagnostic tools would indeed be most welcome. That sounds most strange indeed about no cases in Colombia, and like you, I can’t believe that. Surely even on a statistical basis that would not be possible? Perhaps as you say it is simply down to mis-diagnosis and a lack of resources.

    Thanks for all of that.

    Best wishes

    Gavin

    #34410
    marions
    Moderator

    Gavin….I have a tendency to believe the same. Newer diagnostic tools allow for better and more accurate diagnosis but, we still need better one’s yet. Interestingly, I had spoken to a physician from South America who informed me that in his country (I believe it was Columbia) there are no reported CC cases. I cannot possibly believe that because, I strongly believe that those patients are misdiagnosed. Anyway, that is just my thought. I don’t have anything to base it on other that it simply doesn’t make any sense. Especially, from a country with such limited resources. As intrahepatic CC is still considered to be a liver cancer then there would be one answer. BTW: the diagnoses of CC also includes: gall bladder, Klatskin (hilar), extrahepatic.
    Best,
    Marion

    #34409
    mlepp0416
    Participant

    Thanks Gavin! Tom did not have any of the risk factors so his CC origin is unknown. Some of the things I have read suggest that mechanics because of working with engines, metal and oils could be at risk for getting this type cancer. Tom was a mechanic in the Army so if that is where he contracted CC it would/could make sense.

    You are right about a ‘fighting’ attitude! Both Tom and I have a lot of ‘fight’ and we are not going to just sit and let anyone tell us that he has an expiration date!

    Go with God and KEEP KICKIN’ that cancer.

    Margaret

Viewing 15 posts - 226 through 240 (of 285 total)
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