Forum Replies Created

Viewing 15 posts - 691 through 705 (of 726 total)
  • Author
    Posts
  • in reply to: Stan’s CA 19-9… 519, his emotional score -10 #34915
    mlepp0416
    Participant

    All I can say is that when Tom’s tumor markers were normal he had no issues. Both times CC was detected, it was the tumor markers that showed that there was something wrong…

    Margaret

    in reply to: My Sis #34927
    mlepp0416
    Participant

    Julia: KEEP DANCING! I call it the Happy Dance. Anytime I get good news about my husband Tom, I do the Happy Dance! With CC we have to dance to the positives!

    Go with God and KEEP KICKIN’ THAT cancer

    Margaret

    in reply to: Stan’s CA 19-9… 519, his emotional score -10 #34910
    mlepp0416
    Participant

    Scarman2008:
    I agree with Lainy! Tom’s CA 19 is 336, down from 466 three weeks ago and his bilirubin level is 22.7 down from 24.7 three weeks ago. He is currently undergoing radiation for her reoccurance of a CC tumor 20 months after a left liver lobe resection.

    Never give up! Keep a positive attitude! No one has an expiration date stamped on the bottom of their feet or on their butt!

    This wonderful site has given me a lot of information and helps me to maintain a positive attitude – even on those days when being a caretaker to a very sick husband gets me a bit down.

    Prayers from Wisconsin coming your way.

    Go with God and KEEP KICKIN’ THAT cancer.

    Margaret

    in reply to: New to this #34943
    mlepp0416
    Participant

    Hi Maebas2;

    Sorry to hear about your dad, however you have found the best site to be a member of. Of course we all wish that we didn’t know about this site. You will find a lot of information on this site and will get a lot of feedback.

    The best advice that I can give is to ask all the questions that you can, do all the research that you can. Never take NO for an answer. Being informed is your best ally in your dad’s fight with CC.

    My husband Tom has CC and was diagnosed in May 2008 and underwent a resection in June 2008. Tom, like your Dad was never sick! The only indication that there was something wrong was that his liver enyzmes were elevated!

    Unfortunately, Tom started turning jaundiced on Thanksgiving 2009. He has a re-occurance of a CC tumor in the remaining right biliary tree. It is inoperable. You can read more about Tom’s journey on this site. My login name is melpp0416.

    Try to remain positive as no one has an expiration date stamped on the bottom of their feet or on their butt!

    My daughter Brianne is 25 years old and Tom has been her step-dad for almost 10 years. She too is having a hard time dealing with Tom’s cancer and terminal diagnosis. I will tell you, as I tell her, take it one day at a time, spend time with your dad as every moment is precious. Build those memories and take a lot of pictures.

    Prayers for your dad are coming his way from Wisconsin.

    Go with God and KEEP KICKIN’ THAT cancer!

    Margaret

    in reply to: My Husband and Cholangiocarcinoma #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

    in reply to: Anti-anxiety meds #34904
    mlepp0416
    Participant

    Rick.Kamp:

    Welcome! So sorry that you have to be on this site, however, with that being said, you will find a very caring amount of people on this site. All of us have experiences that you will be able to relate to.

    I can only imagine what type of impact a terminal diagnosis would have on a person. My husband Tom also has a terminal diagnosis. His oncologist with the VA medical center told him to go home and get his affairs in order. Since Tom does not have an expiration date stamped on the bottom of his feet, or on his butt, we decided to find a doctor who was willing to help us fight this evil cancer.

    My login name in mlepp0416 and you can read about my husband Tom’s CC fight.

    Tom was prescribe a antidepressant also (Trazodone 50mg) but the doctor said that it would be about 4 weeks before he would notice a difference. He took one pill and decided that he did not need it nor want to take it.

    My advice would be to take one day at a time, live each day to the fullest, spend lots of quality time with your children and your wide and make wonderful memories for them. Never take no for an answer. Tell your wife and children every day how much you love them. Ask lots of questions of your doctors, have them explain everything to you in detail and in words you can understand. Don’t dwell on the ‘terminal’ diagnosis. Read everything you can get your hands on regarding CC including stories on this site. Be Optimistic, do those things you have been putting off for a rainy day. And best of all KEEP KICKIN’ THAT cancer!

    Prayers from Wisconsin are coming your way.

    Go with God and KEEP KICKIN’ that cancer.

    Margaret

    in reply to: Timely diagnosis? #34885
    mlepp0416
    Participant

    Jen and Lu:

    Welcome to the site, you will find a lot of answers here but no one truely wants to be a member of this site.

    In my husband Tom’s case, we dealt with the Veterans Hopsital in Iron Mountain. The first indication that there was something wrong was based on blood tests were his Alk Phophaste was 10 times normal. All they wanted him to do was discontinue some meds, then come back in a week for more blood tests, then use a special diet, then come back in a week for more blood tests…after about 4 weeks of that garbage, I took matters into my own hands and go into a civilian doctor and within 2 days an ERCP was scheduled, they could not get through the blocked bile duct, so the next day they introduced a wire from the chest wall and via the ERCP there were able to stent the site of the original tumor, they did a brushing of the bile duct where cancer cells were found and they immediately identified it as CC. That was in April of 2008. Tom was a candiate for surgery based on where the tumor was (Left lobe of liver about 1 1/2 CM from the junction between the left and right biliary tree. His original tumor was about 1.5 CM. Tom had a successful resection but had a tumor reoccurance in November 2009 in the remaining right biliary tree.

    mlepp0416 is my login name and you can read Tom’s story on this site.

    With this type of cancer, a good pathologist should be able to determine what type of cancer cells your dad has. You need to ask any and all questions you have. Prior to Tom’s surgery I walked into the surgeons office with my list of questions wrote down and we did not leave that surgeons office until he’d answered every question! There is no such thing as a dumb question when dealing with this type cancer.

    If you don’t like the way the doctor answers those questions, then seek a second opinoin. The first doctor had only done less than 20 liver resections in a 20 year period. I did not put my husbands life in that doctors hands needless to say. We ended up going with a VA doctor that had just transferred to the VA Hospital in Milwaukee Wisconsin. She’d done hundreds of liver resections and liver transplants when she was at Froedert Hospital in Milwaukee. She took all the time necessary to explain the surgery to us, the recovery time, with no complications, the recovery time with complications. She drew up diagrams to show us where the cancer was, how she planned to cut, etc. She gave as “Warm Fuzzies” and we were very confident in her ability to get Tom through surgery successfully.

    Prior to meeting with the surgeon, I was on the computer for hours looking at anything and everything I could find on this type of cancer. As questions came to mind, I’d write them down. I still do that today based on Tom’s reocurrance and now his radiation.

    Given that CC is a rare cancer and there are many doctors/oncologists who never see this type cancer, it is not unusual that it’s taking weeks to get a proper diagnosis. Good luck to your dad, prayers from Wisconsin coming his way.

    Go with God and KEEP KICKIN’ THAT cancer.

    Margaret

    in reply to: What cancer center sees the most bile duct cancers? #34838
    mlepp0416
    Participant

    Randi,
    I work for a Health Insurance company and I see / hear a lot of our member’s utilize Mayo Clinic. I believe that Marshfield Clinic in Marshfield is good also. (that is where Tom went for his 2nd opinoin)

    Good luck in your search.

    Go with God and KEEP KICKIN’ THAT cancer.

    Margaret

    in reply to: Update re: mom’s cc progression #34897
    mlepp0416
    Participant

    Katherine, I’m not certain exactly what ‘non-pitting’ edema of the legs is, but my hubby Tom has edema of his feet and lower legs. Have the docs checked the Albumin levels? Tom’s is very low which they say is causing the edema. They can give an injection/infusion of Albumin but it’s only a short term solution. The way it was explained to us is that the fluid is ‘leaking’ from the blood vessels. In Tom’s case, his bilirubin is so high (22.7 at last blood work) that his kidney’s are working overtime to try and flush the bilirubin from his system.

    The best solution they gave us was to wear compression stockings and to keep his feet elevated higher than his heart as much as possible. I also rub is feet legs a couple of times a day, this does give him some relief from the pain the edema causes. (he normally has pretty skinny feet so it’s weird to see them so bloated, in fact, they are so large now that he can’t get his normal shoes on!)

    Keep asking questions and reading the posts on this site. The more informed you are the better, and remember, the only dumb question is the one you don’t ask!

    Go with God and KEEP KICKIN’ THAT cancer.

    Margaret

    in reply to: Can Cyberknife eliminate tumors? Petscan? #34813
    mlepp0416
    Participant

    Lainy: Sounds like Teddy and Tom are having similiar CA 19 levels. Tom’s is 336, down from 466. Tom should be having his PET within the next three weeks, can’t wait to see what it reveals. I hope they can resolve Teddy’s issues. What is his Bilirubin level at?

    Adam, I don’t know much about cyberknife, only know that my hubby Tom was not a candiate because the tumor is involving not only the biliary tree the also the main blood vessel in the liver. Keep reading posts on this site, keep asking questions.

    Go with God and KEEP KICKIN’ that cancer
    Margaret

    in reply to: My Husband and Cholangiocarcinoma #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

    in reply to: The color of urine #34835
    mlepp0416
    Participant

    I think that ANYONE who has ever had a high bilirubin level checks their pee whenever they go! I know I’m always asking my hubby Tom what color his pee is! Also the color of the poo as well. I worry if it’s white (cause no bile is getting into his intestines) and give a sigh of relief when it’s not white (cause that means that some bile is getting through! Currently his bilirubin is 22.7 (down from 24.7) so his pee is dark brown….looks very strange to say the least and requires that I clean the toilet a lot more! (more work for the weary)

    I’ve found that Bleach will take the bile stain and the dark colored urine stains out of white underwear! We have a bucket of bleach water and all the stained white clothing goes into the bucket to get the stain out! Works wonders!

    Go with God and KEEP KICKIN’ that cancer.

    Margaret

    in reply to: Cholangitis #34797
    mlepp0416
    Participant

    LOL, my husband Tom LOVES his external drain and bag. NOT! We thought it was gone forever when 7 1/2 months after his original resection it was finally gone. He loved it so much that we kept it and burned it in the campfire 1 years post surgery. Needless to say, he was devasted when his bilirubin level skyrockted to 24.7 this past December and they had to do an external tube and drain bag to get his bilirubin level down. (They could not get an internal stent in because the tumor is blocking everything) Come this time next year we may be having another drain bag burning!

    Go with God and KEEP KICKIN’ that cancer!

    Margaret

    in reply to: No More Pain #34872
    mlepp0416
    Participant

    Dear Sad in Chandler:

    So sorry to hear of your loss. Keep Jenoise in your hearts. When someone so young passes away so quickly it is always hard to understand why. Continue to use this CC site as so many already do. It’s a wonderful site and if nothing else may bring you comfort. All of us on this site ultimately want the same thing, a cure for CC!

    Go with God

    Margaret

    in reply to: Guidance – Bile Duct Cancer #34716
    mlepp0416
    Participant

    OneBigFamily:

    Sorry you had to find this site, but welcome to the CC family that you will find on this site. I’m also a new member. My husband Tom has CC and underwent a successful resection in June 2008, were almost 80% of his liver was taken out. We were told that he was ‘cancer free’ – No chemo, no radiation was necessary, per the VA cancer team.

    On Thanksgiving 2009, Tom started turning yellow. His bilirubin level went up to 24.7 within a matter of 6 weeks. His oncologist with the VA in Iron Mountain Michigian told him to go home and get his affairs in order.

    One thing that I have learned during the time since Tom’s initial diagnosis is to never take NO for an answer. We also considered Mayo Clinic but the distance away from family and friends was something that I did take into consideration and since we were in Milwaukee for three weeks for his initial surgery I wasn’t prepared to do that again.

    We did drive to Marshfield Clinic in Marshfield WI and presented to the ER (that was the quickest way I could figure out how to get into an Oncologist without waiting for an appt) We were back there in two days with an appointment. We’d brought all his records with us when we went to the ER including the latest CT Scan which showed the new tumor in the remaining right biliary tree. The oncologist at Marshfield also said his new tumor was inoperable because of it’s placement. (a 2.5cm tumor smack in the middle of the right biliary tree with blood vessel involvement). She did give us a bit more hope however, and suggested a bile duct stent or external drain to help combat the excessive bile build up in his system (which was causing his yellow color) and suggested chemo and radiation.

    We also went to visit his original surgeon in Milwaukee who agreed with the Marshfield oncologist. We then presented to the Vince Lombardi Cancer Clinic in Green Bay, Wi. Dr. Rhoady (Radiation) and Dr. Nancy Davis (Oncologist) are his doctors there. The plan was to get the liver stented, start radiation and chemo.

    The liver stent has presented a problem (after 5 tries, he still does not have an internal stent) but now has an external drain with a collection bag. Because the bile is not flowing into the intestines they are unable to give him chemo, however they did start radiation and as of this week after about 22 radiation treatments, his bilirubin has come down 2 points (22.7) and his tumor markers have started coming down as well. Apparently the radiation is starting to work.

    You need to ask many questions, get second opinoins, don’t take no for an answer, keep asking why…this is your fight, stay positive!

    Good luck, prayers from Wisconsin are coming your way.

    Go with God and Keep KICKIN’ that cancer.

    Margaret and Tom

Viewing 15 posts - 691 through 705 (of 726 total)