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Viewing 15 posts - 706 through 720 (of 726 total)
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  • in reply to: My Husband and Cholangiocarcinoma #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

    in reply to: My Husband and Cholangiocarcinoma #34406
    mlepp0416
    Participant

    Lainy and Gavin, thanks for the info. When Tom’s VA doctor poo’d treatment that is exactly what we did, we sought second and third opinoins! It may be that radiation and chemo won’t work but we are not giving up without a fight! Parasites account for many liver cancers, or a Liver fluke as it is called, but most of the CC that is seen in the us is ‘idopathic’ which means that they don’t know where it comes from or how it comes about. My Tom was never in Asia, his brother was and his brother married a girl from Vietnam. We’ve even wondered if it Tom could have gotten it from ‘association’ with his brother and his brother’s wife, but I don’t think that is possible. Food for thought however how remote, I guess one will never know…

    Go with God and Keep KICKIN’ that cancer.

    Margaret

    in reply to: My Husband and Cholangiocarcinoma #34403
    mlepp0416
    Participant

    Thanks Gavin. How many cases of CC do they track yearly in Scotland? In the US it’s reported to be between 2,000 – 4,000 cases a year. From the different things I’ve read I think it’s closer to about 1,500 cases per year. Very rare and accounts for only 1% of all liver cancer’s in the US.

    I know it’s a very common cancer in Asian countries. Part of the problem in the US is that many oncologists never encounter this type of cancer, hence why Tom’s oncologist at the VA Medical Center in gave us no hope at all and poo-poohed the suggestion of Radiation and Chemotherapy. I wonder why the doctors in the Asian countries do not confer with the others doctors in other countries. One would think that woud be common sense.

    Go with God and Keep Kickin’ that cancer.

    Margaret

    in reply to: My father #34775
    mlepp0416
    Participant

    Hi MsHopeful:
    My hubby Tom had a successful resection in June 2008 (with a tumor reoccurance in Nov 2009 that he is currently fighting with radiation).
    -Distended abdomen – Tom did not experience that
    -Solid foods – generally are reintroduced when they start hearing bowel sounds. When you are put to sleep for a surgery, everything goes to sleep including your stomach/intestines. They can’t give you solid foods until the ‘internal’ plumbing comes awake and they listen to your stomach and when they hear growling and you start passing gas, etc, then they will reintroduce solid foods.
    -No Gas or BM- Liquids are ok as long as the patient can tolerate it. Tom did not eat anything solid for about the first week after his resection – he had only a liquid diet. Water, ice chips, broth, jello.
    -Tom had a whole slew of doctors. The oncology team, the surgery team, the infectious disease team, the interventional radiology team. Talk about confusing! Each time a ‘team’ of doctors came in, things were changed – my thought was that there were too many chiefs and not enough indians. His surgeon was the main go to person. Since she did the surgery, she had the final say and she was my go to person when I really needed something or had questions that the other teams of doctors could not answer.
    -If there is a bowel obstruction then possible that they could operate again to clear that up. Are you just asking this as a precaution or have they said that he has a bowel obstruction?
    -Bilirubin level – Tom’s bilirubin level was always ‘normal’ pre surgery and post surgery. His bilirubin level never wavered until Nov 09 and that is how we knew that something was wrong. Turns out he had a re-occurance of a new liver tumor that is blocking the flow of the bile into the intestines.

    You need to ask all these questions of your fathers ‘team’ of doctors, ask them to every medical professional that you see come into his room. The more questions you ask the better informed you will be. Ask about the possibilty of stenting the liver bile duct if the bilirubin level continues to rise. It could be that with them going in there to attempt a resection that it ‘stirred’ thing up.

    Best of luck to you. Prayers for your day coming from Wisconsin.

    Go with God and Keep KICKIN’ that cancer.

    Margaret

    in reply to: My Husband and Cholangiocarcinoma #34401
    mlepp0416
    Participant

    Darla: I’m dancing and Kickin’ it!!!

    in reply to: The journey starts #33060
    mlepp0416
    Participant

    Tom:
    Sorry to hear the results of your Bilirubin. My husband Tom’s bilirubin was up to 24.7 and results from this weeks blood work, it’s now down to 22.7 and his tumor markers are coming down also. I will keep you in my prayers. My Tom is having radiation for his inoperable CC tumor, no chemo as of yet until they can get a stent into the bile duct where the tumor is. Radiation seems to be doing the trick to shrink his tumor. Have you discussed radiation with your docs?

    Go with God and Keep KICKIN that cancer

    Margaret

    in reply to: My Husband and Cholangiocarcinoma #34399
    mlepp0416
    Participant

    More good news today, the doc’s told Tom that his Tumor Markers are coming down! But of course he didn’t ask what they had been or what they are now. (I think it’s a guy thing! Sorry all you guys out there) Us women like to get the nitty gritty details! I’ll have him ask detailed questions on Monday! I do know that his Alkaline Phosphatase is very high yet at 1,479, and his GOT/AST is high at 98, and his GPT/ALT is high at 90. Sodium, Potassium and Chloride are all low. I don’t see any ‘tumor markers’ such as CA19, etc. on the blood work sheet so we’ll just have to wait to find out. More Happy Dancing tonight!

    Margaret

    Keep KICKIN that cancer!

    in reply to: Radiation, following a complete resection #34114
    mlepp0416
    Participant

    Marions, my husband Tom had about an 80% resection of his liver, the entire left lobe and over 1/2 of the right lobe. If I remember correctly, his doctor said between 75 – 80%.

    Margaret

    in reply to: My Husband and Cholangiocarcinoma #34396
    mlepp0416
    Participant

    HAPPY DANCE!!! To all our friends on this site – I’m DOING THE HAPPY DANCE….Tom’s Bilirubin level is DOWN…only 2 points, it was at 24.7 and blood work was done yesterday and it is 22.7. That is good news (and we need more good news like this!)

    Still waiting on the culture, and Raye, his doctors are watching the blood in his drain bag. They are not too concerned about it yet, but they are keeping an eye on all his numbers! Nothing to be too concerned about yet, other than his white blood count is 15.6 so they know that there is an infection somewhere….

    Gavin thanks for your thoughts, I do keep Tom bundled up! We have a gas fireplace with a blower and Tom’s chair is very close to that, plus he has a electric blanket. (Some days it’s so hot in the house that I have to step outside to cool off, even if it’s only 20 degrees outside here in Wisconsin) Our poor friends that drive him to his radiation appointments, they are sweating by the time they get to the hospital cause he gets so cold.

    Gaye, I’ve accepted you as a friend on FB!!!

    Marion, FB is pretty easy once you get the hang of it!

    I’ve got tons of pictures posted on FB, so go ahead and check it out!

    Will post more as I know more.

    Love to everyone and Keep KICKIN that Cancer.

    Margaret

    in reply to: My Husband and Cholangiocarcinoma #34388
    mlepp0416
    Participant

    Ok, new DSL malfunctioned when I tried to post on here about an hour or two ago. I will try again! (In nothing else, I’m persistant!)

    Tom had a case of the “Shakes” today and when he went in for radiation, they did his bloodwork a day early. They started him on another antibotic as they think he has an infection going on, low grade fever of 100.6 (not good) They wanted to put him on Cipro but that makes him sick so they put him on Levaquin which helped him the last time.

    He has what appears to be blood in the drain bag and they also did an xray of the drain tube to check that out. They also are growing a culture of the bile that they swabbed from the drain tube to see if that is where the infection is coming from (hopefully NOT!)

    He’s had a cough for the past few days and I think that maybe he has the start of Peumonia (sp?) so hopefully the Levaquin will kick it in the behind.

    We have quite a prayer chain going on FaceBook, so if any of you on this site are also FaceBook users, I am on FaceBook and our prayer chain group is “Love and Prayers for Thomas Lepp”. My name on FaceBook is Margaret Seidl Lepp. Look me up and I’d be happy to become friends with you!

    Thanks to everyone for their thoughts, concerns and Prayers.
    Go with God and Keep KICKIN that cancer.

    Love,
    Margaret

    in reply to: My Husband and Cholangiocarcinoma #34379
    mlepp0416
    Participant

    Tom will be having more blood work on Thursday of this week. Keeping my fingers (and toes) crossed, praying that his bilirubin levels are starting to come down. He gets pretty fatigued after 5 days of radiation, saturdays he sleeps most of the day. Sundays are pretty good though. Sometimes I feel that he is ‘giving up’ and I try to stay positive for him. His feet are still pretty swollen, but compression stockings and foot massages are helping him to get some relief.

    His appetite seems to be improving a bit. Some days he eats hardly anything but today he ate more than he ate all week. I’m hoping that is a good sign. He also seems slightly less yellow today than previously.

    Still no signs of the dreaded side effects of the high bilirubin. No intense itching, in fact, none at all! No brain confusion, he follows along in all conversations, interjecting appropriate comments, etc. Even our daughter who is an RN is amazed. Not to mention his doctors! All this is good and is a positive note.

    Two more full weeks of radiation, then three more days the next week, then a CTSCAN to see if the tumor has shrunk at all. His bowel movements now have color again (THIS IS GOOD) and it means that now some bile is getting into his intestines. A few weeks ago it was white, which means no bile is getting into his intestines (bad sign). We have quite the prayer chain going on Facebook, and I’m a firm believer in the power of prayer.

    Once we know is the tumor has shrunk, then they will once again try to stent the liver bile duct past the tumor. If they get the stent in then he can start chemo which may make his sick, but we’re praying that will do the trick to get him into remission!

    My employer is getting WORK AT HOME set up for me, so I will be able to be with him (although I’ll be here I’ll still be working) so that is another positive in our lives. He no longer has to be at home alone while I’m at work. They are coming tomorrow to put in the DSL line, and I’m thinking that within a week or so I will be working at home. Lots of positives there, no travel time to / from work. I’ll be here if anything happens with Tom. I can sleep about 45 minutes longer each day. I’ll be at home the minute my work time ends!

    Keeping all of you other’s with CC and your caretakers in my thoughts and prayers!

    Go with God and Keep KICKIN that cancer.

    Love,
    Margaret (and Tom of course!)

    in reply to: Good News!! #34682
    mlepp0416
    Participant

    Cinnamin:

    Good news I hope the re-section goes well for you dad.

    Margaret

    in reply to: My Husband and Cholangiocarcinoma #34378
    mlepp0416
    Participant

    Darla, I have sent you an email. Margaret

    in reply to: Radiation, following a complete resection #34111
    mlepp0416
    Participant

    LadyBug:
    My husband Tom had a resection in June, 2008. No radiation and no chemo afterwards….because his ‘margins’ were clear. In hindsight, we are now wishing that he’d had at least chemo becuase on Thanksgiving day, he started turning Jaundiced. He has a 2.5 cm tumor in the right remaining lobe of the liver. All the doc’s here say that he should have gotten chemo EVEN with clean margins. Don’t stop researching, and don’t stop asking questions. I would at least opt for chemo at this point. Radiation would only be helpful IF they see another tumor, else what would they radiate? Remember that no one has an expiration date stamped on the bottom of their feet.

    Go with God and KEEP KICKIN THAT CC!

    Margaret

    in reply to: changing the stents!! #34109
    mlepp0416
    Participant

    AMR:

    When my husband Tom has had stents in his liver they also had to be changed out about every three months, to reduce the chance of infection. His current issue is that after his liver resection, a new tumor appeared in the rt. biliary tree and they can’t get a stent in until radiation shrinks the tumor. Remember than no one has an expiration date stamped on the bottom of their feet (or behind their ears!) Never take no for an answer, do the research and ask all the questions you can!
    Go with God and KEEP KICKIN that CC!

    Margaret

Viewing 15 posts - 706 through 720 (of 726 total)