mlepp0416

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Viewing 15 posts - 661 through 675 (of 726 total)
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  • in reply to: My Husband and Cholangiocarcinoma #35249
    mlepp0416
    Participant

    Thanks Lainy, Gavin and Darla! Tom is feeling MUCH better! Augmentin is doing wonders for him along with a hot steam vaporizer! He’s starting to feel ‘human’ again. We’re KICKIN’ it!!!

    Margaret

    in reply to: on pins and needles #35273
    mlepp0416
    Participant

    Beth:

    Wonderful new! Keep us posted on Art’s progress. You will learn all kinds of information on this site. Attitude is everything and Art must keep a positive attitude.

    My hubby Tom had a resection in June 2008 and presented with jaundice in Nov. 2009. He was told to go home and prepare and that he had 6 months. We fired that oncologist and sought new doctors. His bilirubin level climbed to an all time high of 24.7 but after 28 radiation treatments and an external drain his billy is now down to 9.1. We are committed to KICKIN this cancer.

    Go with God and KEEP KICKIN’ THAT cancer.
    Prayers from Wisconsin are coming Art’s way!

    Margaret

    in reply to: Brother with Klatskin tumor #35279
    mlepp0416
    Participant

    Reddobie:

    Keep the faith! This cancer is evil and the journey has many twists and turns. My husband had a resection in June 2008 and was ‘cancer free’ and had clean margins. In Nov 2009 he presented with jaundice and a ‘new’ tumor, inoperable.

    We are fighting and he just finished 28 rounds of radiation. His bilirubin level was at an all time high of 24.7 and it is now down to 9.1. Your brother may need to seek 2nd and 3rd opinoins in regards to his care and treatment.

    Use this site as a reference tool, learn all you can regarding treatment. The only dumb question is the one that you don’t ask.

    Prayers are coming your brothers way from Wisconsin.

    Go with God and KEEP KICKIN’ THAT cancer!

    Margaret

    in reply to: Looking for Sue? #35294
    mlepp0416
    Participant

    2reasons2fight:

    Your name says it all, you have those two reasons so you stay positive for them! This type cancer can sure try to ‘take the wind out of your sails’ but stay positive! I firmly believe that attitude is everything.

    Prayers are coming your way!

    Go with God and KEEP KICKIN’ THAT cancer

    Margaret

    in reply to: The journey starts #33071
    mlepp0416
    Participant

    Tom:

    Sorry to hear about the internal stent not working. My hubby Tom’s bilirubin was up to 24.7 and that was with an external drain (they are a pain in the behind) but tend to help with the high billy level. After 28 radiation treatments his billy is now down to 9.1 (so the tumor has shrunk). Next attempt for an internal stent is next week.

    I’ll have to try your mixture on Tom for some weight gain, only problem is that he is also diabetic so it may raise his blood sugar too much! Drat! He has been loosing weight right and left. (I wish I could say the same for me)

    You hang in there and stay positive! And KEEP KICKIN’ THAT cancer!!

    Once again, prayers are heading your way!

    Go with God.

    Margaret

    in reply to: Update: good news #35235
    mlepp0416
    Participant

    JoewillLive:

    Welcome to the site that no one wants to join. Weight Loss, in my husbands case he was a robust 180 lbs pre surgery. After his liver resection in June 1008 for CC and his three week hospital stay he was down to 140 lbs. After Feb. 2009 he started gaining weight back slowly but he was gaining. He was back up to about 155 lbs.

    However, He was one of the 5% that can reoccur, and presented with Jaundice in Nov 2009. He was diagnosed with another bile duct tumor. Inoperable and his oncologist told him to go home and get his affairs in order and 6 months.

    We decided to ‘fire’ that oncologist and sought 2nd and 3rd opinoins. They could not place a stent and he now has an external drain tube to drain off the bile. His bilirubin level climbed to an all time high of 24.7. He underwent 28 radiation treatments and his bilirubin level is now down to 9.1. Once they place the stent he will be able to start chemo. He has experience a huge weight loss with this tumor and is now down to about 119 lbs.

    All I can say is that this is a terrible disease. There are many bumps in the road and we don’t know what the future will bring. Spend time with your father in law and enjoy every moment you have with him. I LOVE the pic of the dog! AWESOME that your father in law has a buddy.

    Prayers coming your father in laws way from Wisconsin.

    Go with God and KEEP KICKIN’ THAT cancer.

    Margaret

    in reply to: Mom was dx #35245
    mlepp0416
    Participant

    Talex:

    So sorry to hear of the loss of your Mom. Generally a liver resection is the only ‘cure’ for cholangiocarcinoma. However with that being said, there are some other options for getting one into remission with this kind of cancer also.

    My husband Tom had a resection in June 2008. Unfortunately, all too often, even after a liver resection, this type of cancer reoccurs in about 5% of those who have had a resection. My husband Tom has had a reoccurance. He developed Jaundice in Nov. 2009. He now has a new tumor in the remaining right biliary tree. Because of it’s placement and because it involves the main blood vessel, it is inoperable.

    We did seek 2nd and 3rd opinoins both prior to his initial surgery and also for his reoccurance. His first oncologist told him to go home and prepare and that radiation and chemo were not an option.

    Your questions will most likely never be answered. Instead of asking your self the “should have’s” or “could have’s” focus instead on the positives of your mother’s life. Remember the wonderful things she accomplished in her life. Remember all the people whose lives she touched. She is at peace now and no longer has to suffer with this terrible disease.

    My husband Tom currently has an external drain tube to try to bring down his bilirubin level (it was up to 24.7) and he just finished 28 radiation treatments to shrink the inoperable tumor. His bilirubin level is now down to 9.1 but it has been a very bumpy, painful, exhausting road which he is now traveling. He has said that there are days when he wishes he’d just died on the operating table.

    I can only be there to support him in whatever he decides to do, to go forward and continue fighting, or to give up. I do agree with you in that if you have a loved one who is going through this type of surgery you need to be there with your loved one. You need to question all the things that they are doing and question why they are doing them. If I had not been there for Tom to be his advocate, I’m positive that he would have never left the VA Hospital in Milwaukee.

    Talex, go with God and prayers from Wisconsin are coming your way.

    Margaret

    in reply to: Can’t imagine the end w/my Sister #33329
    mlepp0416
    Participant

    Kristi:

    So sorry to hear of your loss of your dear sister. Keep her memory alive and you will always have her in your hearts. Please continue to use this site and perhaps you can offer insight and suggestions to others.

    Your sister is now at peace and you and your husband will be wonderful parents to her children. God bless you all.

    Go with God.
    Margaret

    in reply to: CC Stability for Now #33687
    mlepp0416
    Participant

    Mom’s Daughter: Keep on dreamin! Prayers from Wisconsin are coming your Mom’s way!

    My husband Tom will be starting on Chemo as soon as they can get the liver stented. You can read about his journey with CC under my login name mlepp0416.

    His bilirubin continues to go lower, 9.1 this weekend when he was in the ER for fever.

    Prayer is an amazing thing! Attitude is everything.

    Go with God and KEEP KICKIN’ THAT cancer

    Margaret

    in reply to: Not sure what dads options are?? #35229
    mlepp0416
    Participant

    Kay:

    So sorry to hear about your dad. I’m very surprised that a radiologist would be able to make a determination of whether or not radiation would be a option! You need to be discussing your dad’s options with a radiation oncologist.

    My husband tom had a resection in June 2008 and a tumor reoccurance in the remaining rt biliary tree in Nov 2009. After this reoccurance, the oncologist that the VA assigned to him post surgery (Dr. Singh) told him that there were no options available, he said that radiation or chemo would not work! We also met with his doctor that did the resection and she at least gave us hope that Chemo / radiation WOULD work! She told us that many oncologist do not have experience with this type liver cancer and therefore in their minds, when there is a reoccurance of a new tumor that is inoperable, they feel that nothing will help. (which is incorrect thinking in my mind)

    You can read about my husband Tom’s journey with CC under my login name, mlepp0416.

    I’m a firm believer in NEVER GIVING UP! We sought out 2nd and 3rd opinoins for Tom after Dr. Singh told him to go home and that he had 6 months. There are many radiologists and oncologists who have never encountered this type of cancer so they don’t know what will or will not work.

    You need to run to the nearest radiation oncologist taking all your dads information with you to seek out different opinoins. It is also very good that you are meeting with your dad’s surgeon, maybe they can give your more hope in his case.

    My husband Tom has successfully completed about 27 radiation treatments and his tumor has shrunk, his bilirubin level that was at an all time high of 24.7 is now down to 9.9! His tumor markers that were at 466 are now down to 336. Radiation should be discussed more in your dad’s case. Never take NO for an answer, keep seeking until you find some options.

    Prayers from Wisconsin are coming your Dad’s way!

    Go with God and KEEP KICKIN’ THAT cancer.

    Margaret

    in reply to: Hello everyone! #35208
    mlepp0416
    Participant

    Congratulations on the Clean CT Scan. I agree with ajcarman72 – diabetes and disks are minor setbacks compared to the mountain that you have climbed with CC.

    Go with God and KEEP KICKIN’ THAT cancer.

    Margaret

    in reply to: You KNEW I was going to post today… #35222
    mlepp0416
    Participant

    Sue:

    WONDERFUL! I’m hoping that my hubby Tom will be able to say the same thing three years post surgery. We are at 19 1/2 months post surgery and 22 1/2 months since diagnosis.

    We’ve hit a few bumps in the road along the way, inculding an inoperable new tumor but we’ve zapped that one in the behind with radiation and next we’re onto a stent in the bile duct then onto Chemo.

    Keeping you in our throughts and prayers for continued good health.

    Go with God and KEEP KICKIN’ THAT cancer
    Margaret

    in reply to: Stage 1 cc with 40 % resection w/2 inch margin #35165
    mlepp0416
    Participant

    My Tom already had Type 2 diabetes long before he was diagnosed with CC so can’t help you out there.
    Margaret

    in reply to: Stage 1 cc with 40 % resection w/2 inch margin #35154
    mlepp0416
    Participant

    Ejhern:

    Welcome to the site that no one wants to join, myself included. Thanks for posting. My husband Tom’s story is similiar to yours. He was also diagnosed in early 2008 with surgery in June 2008. The did a resection of 3/4 of his liver, left lobe and part of rt lobe and gallbladder. He was never sick and the only indication that something was wrong was elevated liver enzymes. An ERCP showed cancer cells. He also had clean margins. You can read his amazing story under my login name mlepp0416.

    Tom has had a re-occurance of a new tumor in the remaining rt biliary tree. In Nov 2009 he started turning juandiced. His new tumor is inoperable because of where the tumor is. His oncologist gave him 6 months, however both Tom and I were not happy with that! We sought out 2nd and 3rd opinoins. Although they agreed with the inoperable part they did not agree with the no chemo and no radiation as a course of action.

    Tom underwent radiation – could not do chemo because the liver was blocked and they were unable to stent past the tumor. His bilirubin level climbed to an all time high of 24.7. He had an external drain placed and after about 27 rounds of radiation, his bilirubin level is down to 9.9!

    In two weeks they are going to try to stent the liver again and once his bilirubin is back to normal levels he will start chemo.

    All his new doctors now say that he SHOULD have had chemo after surgery because he may not be having this problem right now IF he’d had chemo, even with clean margins they feel he should have had it. Like you his team of doctors after the surgery said it was not necessary because of his clean margins.

    Personally I would push for the chemo just to be on the safe side, but I am by no means a medical professional. I certainly hope your ERCP goes well and it turns out to be nothing, however with this type cancer one never knows how it will go.

    I have read many posts on this site, and traveling with Tom on his CC journey, it seems that there are many twists and turns that can occur, no one seems to be exactly the same, but somehow similiar…

    My advice would be also to ASK all the questions you can, get second opinoins and talk to your doctors about chemo as a precaution.

    Good luck to you in your journey, Prayers are coming your way from Wisconsin!

    Go with God and KEEP KICKIN’ THAT cancer.

    Margaret

    in reply to: My Husband and Cholangiocarcinoma #34430
    mlepp0416
    Participant

    Lainy, Thanks! We are managing to keep warm over here in the ‘Tundra’ More cold coming though. -20 in the forecast….brrrrrr…however soon I won’t have to go out into the cold – almost set up for work at home…just waiting on the ‘work’ computer!

    Don’t you just love the good news that people are getting these days? I think that with more cases of Cholangiocarcinoma and better diagnostic tests and doctors gaining knowledge is this cancer is the reason. But whatever it is, I’m hoping to see more of this in my lifetime.

    Margaret

Viewing 15 posts - 661 through 675 (of 726 total)