My Husband and Cholangiocarcinoma

Discussion Board Forums Introductions! My Husband and Cholangiocarcinoma

Viewing 15 posts - 91 through 105 (of 285 total)
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  • #34559
    gavin
    Moderator

    Hi Margaret,

    Thanks for the update on Tom. I am glad that Tom is keeping busy working in the garden and I am sure that it must look very good indeed! And I would imagine also that all that gardening will help with building his muscles and strength, it sounds like a lot of work to me!!

    My best wishes to you and Tom,

    Gavin

    #34558
    jennifers
    Member

    You’ll both be in my prayers tonight Margaret – I hope it goes well on Saturday, that his bili levels remain under control, and that the physio helps. I’m sure that garden of yours looks absolutely beautiful… ask if he wants to visit Calgary and do my yard next :)

    Jen

    #34557
    mlepp0416
    Spectator

    Just thought it was time to give everyone an update on Tom. He continues with the external drain to keep his bilirubin level under control. Currently it is about 6.3 or so. He’s already had to have the drain that Mayo put in exchanged because the bile started to smell (bile should NOT have a strong putrid odor, if there is any odor it should be a slightly sweet smell). And the Mayo doctor did not add any extra holes to the drain tube (which apparently he needs to have else the drain gets clogged up within a few weeks)

    We still have not heard back from Mayo since we sent all his scans, so we are still in a holding pattern. Tom has started Physical Therapy to help build his muscles and get his strength back.

    He works out in the yard every day, planting TONS of flowers. He said he wants to have the yard all beautiful and wants to be able to enjoy it before he leaves. He’s got great plans and I believe that he will complete them too, including all the landscaping that he has planned. So far he’s completed the flower garden around the new deck.

    We did complete the paperwork for the Veteran’s to see if we can get his disability rating switched from Non-Service connected to Service connected due to his Cholangiocarcinoma and have just heard back from the VA. We have to be in Milwaukee at 11:00 am this coming Saturday for them to review his case and for them to run whatever tests they feel they need. The more research that I do, the more evidence I’m getting that his exposure to PCB’s is the culprit. The Green Army paint that Tom used for almost three years during his army stint in the Motor Pool contained Chromium-6 which is highly toxic to the liver and causes bile duct cancer. In 2003 the Army switched their Green Army Paint to a Chromium-3 based paint which is ‘safer’ than the paint with Chromium-6.

    It would be interesting to do a study on how many people with Cholangiocarcinoma were exposed to PCB’s and espically Chromium-6. It had been thought that Cholangiocarcinoma was only caused by the the ‘Asian Fluke’ but there is a lot of evidence out there showing that PCB’s also cause both liver cancer and bile duct cancer.

    We are holding it together here at our end and hope that each of you, whether you are a Cholangiocarcinoma Survivor or a Caretaker of a Cholangiocarcinoma survivor continue to beat the odds and help spread the word about this type of cancer.

    Go with God and KEEP KICKIN’ THAT cancer.

    Margaret and Tom

    #34555
    mlepp0416
    Spectator

    Thanks Lainy and Gavin. We are giving it one more shot it Dr. Edwards feels he has a chance after he sees the films. Just a case in point, when going for a second opinoin, make sure that when you request information to be sent to another doctor, have them include pictures, films and basically everything from any and all ERCP’s and Cholangiograms as well as CTScans and MRI’s because there may be something that the new doctor can learn from seeing EVERYTHING!!!

    Go with God and KEEP KICKIN’ THAT cancer.

    Margaret

    #34554
    gavin
    Moderator

    Hi Margaret,

    I so hope that this works out for Tom, and as Lainy says the doctor must feel there is a chance of this working or surely he wouldn”t be trying it.

    As always, my best to you and Tom, and Keep Kickin it!!!

    Gavin

    #34553
    lainy
    Spectator

    HURRAH for you and Tom to give it that good old Wisconsin try. If the doctor wants to give it a try then he feels there is a chance or he wouldn’t do it. When is this going to happen? Did ya ever feel you would welcome a “new pre tumor”? Are we not just the crazy bunch? We will be sending prayers your way and hoping for the best.

    #34552
    mlepp0416
    Spectator

    All: Dr. James Edwards, interventional radiologist from Mayo tried to get the internal stent in and it was once again a no go…But the doc wants to get his films from his pre tumor ERCP so that he can ‘map’ the bile ducts and then he feels that ‘maybe’ he can be successful. Doc Edwards was very excited that Tom had at least one ERCP ‘pre new tumor’ so he now can get a ‘road map’ of his bile duct where the tumor is….

    However, the Liver Specialist, Dr. Dunn pretty much tried to talk Tom out of trying any more. His words, “Your quality of life is pretty good, so why mess with it”

    On the six hour drive home we discussed it at length with Tom’s son and one of our good friends….and the end result is that we are having the requested information sent to Dr. Edwards and if he thinks he may be able to get the stent in we will give it one last shot….more to come as we know more.

    Go with God and KEEP KICKIN’ THAT cancer.

    Margaret

    #34551
    lalupes
    Spectator

    I’m thinking so hard about you & Tom this week, Margaret.

    Big hugs & many positive thoughts to you both.

    Julia xx

    #34550
    mlepp0416
    Spectator

    Thanks a lot Rick, that is encouraging!
    Margaret

    #34549
    rick-kamp
    Member

    Margaret and Tom,

    I have VERY strong feelings for the Mayo ERCP team. They are absolutely fantastic – and I know most of them pretty well by now. Dr. Barron, Dr. Goustout, Dr. Virtue, Dr. Lopez – they are all excellent and all they do is this procedure. They are able to stent a bile duct when noone else can. My bet is that Tom will be setup with Dr. Goustout because he is the best with stenting and installing metalic stents. He’s done 3 of my ERCPs so far.

    Best of luck to you at Mayo. You’ll be in good hands!

    Rick

    #34548
    mlepp0416
    Spectator

    All: Three days and counting until we head to Mayo….

    On a sad note, Tom’s sister Barbara, age 69 passed away on Thursday at about 11:30pm. This morning was spent making all the funeral arrangements since I was her executor. Wasn’t enough in her funeral fund which I started around 4 1/2 years ago, but it at least gave us a jump start on the expenses.

    I had a grave plot which cost me $95 to transfer to her and another $1,010 for the charges to put her into that plot, plus another $900 for the funeral home to cover those expenses above the funeral package….What a way to spend money, however, I’m gaining some useful experience and will have more knowledge if the time comes for Tom. The last time I did this was many years ago when my mother passed.

    Did you know that it costs more to give a person a decent funeral and burial than it does to have a child??? With all the laws that there are now surrounding death and burial….it’s a racket I tell you!

    Go with God and KEEP KICKIN’ THAT cancer.

    Margaret and Tom

    #34547
    lainy
    Spectator

    Great news, Margaret! When I think of you I think of “I am woman, hear me roar”. You go get them tiger! Love waking up to this kind of news!

    #34546
    lalupes
    Spectator

    That sounds great, Margaret!!

    My best wishes to you both. x

    #34545
    tiapatty
    Member

    Margaret,

    This is great news, Minnesota here they come! Good luck!

    Patty

    #34544
    cherbourg
    Spectator

    Margaret!

    What great news! I’m sure you are excited! Keep us informed!

    Hugs, prayers and crossed fingers and toes from North Carolina!

    Hugs,
    Pam

Viewing 15 posts - 91 through 105 (of 285 total)
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