mlepp0416

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Viewing 15 posts - 676 through 690 (of 726 total)
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  • in reply to: My Husband and Cholangiocarcinoma #34428
    mlepp0416
    Participant

    All:

    Another phase in our journey to KICKIN’ this cancer had ended. Tom now is the proud bearer of an “Award of Achievement”:
    Be it declared that Thomas Lepp has completed the prescribed course of radiation therapy with the highest degree of courage, determination and good nature. We appreciate the confidence placed in us and the opportunity to serve you. We wish you well and take care. Staff of Radiation Oncology, Vince Lombardi Cancer Center.

    His radiation oncologist said today “This is the pinkest I’ve ever seen you!” (Tom was very jaundiced the first time he met Dr. Rhoady) and that the radiation would continue to work in his system for another three weeks, and the “Tumor has shrunk”! All wonderful words to hear.

    We won’t know the exact size of the tumor until he gets his CT or PET scan (in 2 – 3 weeks) and we’re hoping that the Doc’s will be able to stent the bile duct in about 2 weeks.

    Tom has told the Cancer clinic that if he sees their number on caller id he is going to answer and say “I’m on vacation and the checks in the mail” and hang up! (He still has his wonderful sense of humor!)

    God bless you all for all your thoughts, concerns and prayers! I will continue to be a part of this site going forward.

    Margaret

    in reply to: 1 year in and looking for information #35152
    mlepp0416
    Participant

    BDK:

    Welcome to the best site on the internet for persons with Cholangiocarcinoma! It’s the site that no one wants to join, myself included. With that being said, you will find a ton of information on this site, simply by reading the previous posts!

    My husband Tom also had a resection in June 2008. After removing 3/4 of his liver and gallbladder, they said no chemo and no radiation because all his margins were clear. You can read his journey under my login name, mlepp0416.

    After numerous ctscans, liver enzymes coming down, tumor markers coming down and being told over and over that he was cancer free, in Nov. 2009 he started turning yellow. A CTScan revealed a new tumor in the remaining Rt lobe of the liver, in the center of the biliary tree. Inoperable because of it’s position and because it involved the main blood vessel in the liver.

    As Marion stated, each case and each person is different and can have different outcomes given the circumstances. Tom and I are not giving up and we’re committed to KICKIN’ this cancer, even given setbacks like the new tumor. We got 2nd and 3rd opinoins. The one common thread that we have seen is that all his new doctors said that even with clean margins, Chemo should have been done at a minimun.

    He has now just completed about 27 rounds of radiation and his bilirubin level which had climbed to 24.7 is now back down to 9.9 and his tumor has shrunk. His tumor markers which were at 466 are coming down again and were about 336 at the last check.

    Be vigilant in getting your blood work done, follow doctors orders, be optimistic! Never take no for an answer and ask every question you can think of.

    Prayers are coming your way from Wisconsin!

    Go with God and KEEP KICKIN’ THAT cancer.

    Margaret

    in reply to: confused #35120
    mlepp0416
    Participant

    Donna9:

    Welcome to the site where no one really wants to be a member, myself included. I am my husband Tom’s caretaker. Tom was diagnosed with CC in March 2008 and in July 2008 he had 3/4 of his liver removed because of Cholangiocarcinoma. All the doctor’s were telling him he was cancer free. No Chemo, no Radiation. In November of 2009 he started turning jaundiced. You can read more on this site about his journey under mlepp0416.

    Like you we were in disbelief when they told us that he had a re-occurance of the cancer. We too asked ourselves “How can this be?” It’s a question that will most likely never be answered. Cancer is very evil and all you can do is to try to be very positive for your husband. Tom’s original oncologist gave him 6 months and told him to go home and get his affairs in order.

    We didn’t like that diagnosis and sought 2nd and 3rd opinoins. Although all the doctors agreed that his new tumor was inoperable because of it’s location (in the middle of his remaining biliary tree in the rt. lobe of the liver, including the main blood vessel) two of the three strongly suggested radiation and Chemo.

    Because the liver was blocked, Chemo was a no go. He has had about 27 radiation treatments and his bilirubin level climbed to 24.7. Luckily Tom did not have any side effects from the high bilirubin. Blood work today showed that his bilirubin level is now down to 9.9. So we are on the right track.

    No one knows what the future will hold. Don’t give up hope. Do all the research you can, ask all the questions you can. If one treatment won’t work, ask about the next one. No one has an expiration date stamped on the bottom of their feet (or on their butt!)

    Get more than one opinoin. Last of all NEVER GIVE UP. Keep fighting, keep looking and above all believe in the power of prayer!

    Go with God and KEEP KICKIN’ THAT cancer.

    Margaret

    in reply to: Another reaction to chemo! #35115
    mlepp0416
    Participant

    Rick,
    Sorry to hear about your reaction to the Oxaliplatin treatment – but don’t give up just yet! I’m sure the doctors have another game plan up their sleeves!

    Keep the faith and keep trying until you find something that works!

    Sorry that I can’t give any advice about this type treatment because as of yet my husband has been unable to try any type of Chemo because of his high bilirubin levels. But on a good note, we are getting closer! His blood work today came back with his bilirubin level down to 9.9 (it was 22.7 one and a half weeks ago)

    Go with God and KEEP KICKIN’ THAT cancer!

    Margaret

    in reply to: My Husband and Cholangiocarcinoma #34424
    mlepp0416
    Participant

    All:

    Just wanted to post the AWESOME news that we got today! Tom’s bilirubin level has come down, WAY DOWN, after his blood work today, his bilirubin level was at 9.9!!!! A week and 1/2 ago it was 22.7. I think Prayers and Radiation are doing the trick!

    One more radiation treatment to go, then in 2 weeks they will be trying to stent the bile duct again. We’re DANCIN’ in Green Bay/Little Suamico tonight!

    I only wish that everyone on this site would be able to share good news! Never give up!

    Go with God and KEEP KICKIN’ THAT cancer.

    Love,
    Margaret and Tom

    in reply to: Thank You #35090
    mlepp0416
    Participant

    Amy,

    So sorry for you loss. Keep him in your hearts and remember all the good times that you had with him.

    Go with God.
    Margaret

    in reply to: Grateful for this site #35105
    mlepp0416
    Participant

    TK:

    Welcome to the site that no one really wants to join, my self included. I am my husband Tom’s caretaker. He also has CC and underwent a liver resection in June 2008. You can read his story under my login name, mlepp0416.

    You have come to the site where you will feel like you have a family, and will find many friends for support and information. Please ask your questions, ask for advice, you will get answers and support from people who have many difference experiences.

    There is no such thing as a dumb question!

    Prayers from Wisconsin coming your way!

    Go with God an KEEP KICKIN’ that cancer.

    Margaret

    in reply to: Please help – starting a long fight!! #35025
    mlepp0416
    Participant

    Dear 2reasons2fight:

    Welcome to the best little club on the internet that no one really wants to join, myself included. I am my husband Tom’s wife and caretaker. I too did not wish to join this group, but now that I have, I’m most grateful! You could not ask for a more caring group of people, all willing to share their knowledge and their experiences.

    Never give up, attitude is everything when fighting this type of cancer. As I always like to say, no one has an expiration date stamped on the bottom of their feet (or on their butt!)

    No one wants to die, myself included. I also do not want my husband to die. We are fortunate that our children are all grown and have families of their own. Somedays, I wonder how much longer my husband Tom can go on, but each day is a new day and we continue his fight renewed.

    Tom had 3/4 of his liver removed on June 16, 2009. He had a rough journey and was in the hospital for three weeks, with 6 weeks of IV antibotic therapy once he was at home. He had a drain tube for 7 1/2 months due to a bile leak. He had no chemo and no radiation post surgery because his margins were clean and they saw no need. He was cancer free, they said.

    In November of 2009 he turned jaundiced. He was given 6 months to live. We are currently at 2 months and counting. But we came out KICKIN’ and decided to get 2nd and 3rd opinoins. His previous oncologist gave us NO hope. And I will not take NO for an answer.

    Tom is currently undergoing radiation and his tumor markers are coming down as well as his bilirubin levels. I want to be able to go back to his previous oncologist and tell him to shove his 6 months where the sun doesn’t shine.

    You can read more on Tom’s journey – under mlepp0416 on this site.

    With this type cancer it’s hard to predict. We have Teddy who is a 4 1/2 year survivor. Tom is currently at his 22 month mark, and going for at least 22 more and longer.

    As Kris said, don’t focus on wasting time worrying about death, focus on all the good things you have going. You have survived the surgery. You have two young children who need their Mommy. You have a family here that will support you every step of the way. Come back often and post your comments, your fears, your thoughts, your issues. We will listen and try to give you good advice.

    Build memories for your children. KICK that cancer in the behind. Stay strong and focused.

    Prayers from Wisconsin are coming your way!

    Go with God and KEEP KICKIN’ THAT cancer.

    Margaret

    in reply to: Post surgery confusion..what to expect?!?!? #35066
    mlepp0416
    Participant

    Hi Courtney:

    So sorry that you have had occasion to join this site. It’s the site where no one wants to join, myself included. But having said that you will find many wonderful caring people on here, as I did.

    My husband Tom had 3/4 of his liver removed in June 2008. Until this past November he was considered ‘cancer free’. He had a new tumor re-occurance with and inoperable tumor. Currently undergoing radiation. You can read about his journey under mlepp0416 on this site.

    Tom too, developed infections after his surgery and was in the hospital for three weeks, then on long term antibotics at home for another 6 weeks. He also had a drain tube for 7 1/2 months.

    Each person can be so different with the outcome of surgery.

    Ask all the questions that you can. There are no dumb questions. Ask his doctors to explain (in words you can understand what is happening) Focus on making your Dad’s stay in the hospital as comfortable as it can be.

    Be his advocate if he can’t/won’t speak for himself. Do all the research that you can, find out what the next steps are.

    Each journey is unique and can be vastly different.

    Prayers from Wisconsin coming your way.

    Go with God, and KEEP KICKIN’ THAT cancer.

    Margaret

    in reply to: Whipple recovery now CC treatment plan #35043
    mlepp0416
    Participant

    Isisman,

    Welcome to the site, that NO ONE including me wants to join. But now that you have found this site, rest assured that you will find caring wonderful people here. It’s a ‘stress reliver’ for me knowing that my husband Tom and I, as his caregiver, are not alone.

    My favorite saying, as Lainy pointed out, no one has an expiration date stamped on the bottom of their feet (or on their butt!) No one can tell us when the end will come. There are many things that I have learned during my husband Tom’s journey with CC. You can read my husbands story on this site under mlepp0416.

    1) Ask all the questions of your husbands doctors that you can. When you think of something, write it down! (there is no such thing as a dumb question)

    2) Never take ‘no’ for an answer, ask why! Get them to explain their reasoning in terms that you and your husband can understand.

    3) Do your homework, research everything you can get your hands on. The internet is great for that. When you come upon procedures for cancer, write it down and ask his docs about it!

    4) Live each day one day at a time. Sometimes we find there is nothing we can do today, but it doesn’t mean that something can’t be done tomorrow

    5) Don’t look too much for a ‘time frame’ but rather relish the time that you have together now. Each day is precious, build those memories, let your husband know that you love him and that you will stand beside him. Cancer patients need to know that they have an advocate and the best way their caregiver can do that is to be with them every step of the way.

    There are members on this site who, like Teddy have a 4 1/2 year survival rate, there are others with shorter or longer time frames. I do not know how long my husband Tom has but regardless of how long or how short it is, I let him know each day that I love him.

    I stopped looking for a ‘time frame’ as soon as his first oncologist said ‘6 months’ cause no one has a right to say how long one has to live.

    Go with God, prayers from Wisconsin are coming your way.

    KEEP KICKIN’ THAT cancer.

    Margaret

    in reply to: The journey starts #33064
    mlepp0416
    Participant

    Hi Tom! Sorry you have to be on this site, however you have now found the best place to be.

    My Hubby, also named Tom has had high bilirubin levels for the past 8 weeks or so, his climbed to 24.7 and they were unable to stent his liver, so he currently has an external drain to draw off some of the bile. At his last blood work, his bilirubin level had dropped to 22.7. He also cannot start Chemo until the liver is able to be stented, so that the bile can flow naturally where it is supposed to be going, into the intestines.

    The way Tom’s oncologist explained it to us is this. The liver is like a giant garbage dump. Anything that goes into the body (like Chemo) is sucked up by the liver. 98% of the chemo will go into the liver and the 2% will go around the body looking for other cancer cells to attack. Then 98% of that 2% will be sucked up by the liver. If he were to go on chemo while the liver is blocked by his tumor, he would very quickly reach toxic levels of chemo in his liver and that alone will kill him. Therefore they have to make certain that the bile is going into the intestines rather than into his entire system.

    Since they were able to stent your bile duct you should see your bilirubin level normalize fairly quickly.

    Have your docs discussed radiation with you as an additional treatment or as an alternative treatment while you cannot be on Chemo? If not, I would suggest asking them if that would be an option.

    Since my Tom cannot be on Chemo right now they are doing radiation treatments for him and this alone has seemed to help. Where before he had no color at all to his stool (no bile getting into the intestines) his stool now has color (bile getting into the intestines) so this alone suggests that the radiation has shrunk his tumor. He has two more radiation treatments to go, for a total of 23 treatments in total.

    Next steps for him are to try to stent the liver again (they’ve tried 5 times and failed each time for various reasons) and once that is stented, his docs say that the bilirubin level should return to normal as quickly as it climbed….Once his bilirubin level is back to normal (which they tell us are from 0 to 1.3) then he will start on chemo and radiation. (Chemo works better in conjunction with radiation so Tom’s docs say)

    Prayers from Wisconsin are coming your way.

    Go with God and KEEP KICKIN’ THAT cancer. Remember that no one has an expiration date stamped on the bottom of their feet (or on their butt!)

    Margaret

    in reply to: My Husband and Cholangiocarcinoma #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

    mlepp0416
    Participant

    sharpeilover:

    My husband Tom has a inoperable tumor, no met to anywhere else in his body. His original tumor was resected in June 2008 and he had a new occurance of a 2.5 cm tumor in the remaining right biliary tree. “They” have given him 6 months. We are now at 2 months out and he is receiving radiation. His tumor markers have gone from 466 down to 336 and his bilirubin level has gone from 24.7 down to 22.7 at the last blood work.

    No one has an expiration date stamped on the bottom of their feet or on their butt.

    I too am surprised that they are not doing radiation for your Mom. Without radiation Tom’s bilirubin level and his tumor markers would have continued to climb. Because those numbers are going down, we know that the radiation is shrinking the tumor and bile is now getting into his intestines (that’s a good thing!).

    We are not giving up, we are fighting this and once the tumor shrinks and they can get a stent into the liver bile duct, then Tom will start on Chemo.

    Good luck in your research for your mom, and as always, ask questions, seek second and third opinoins and never take no for an answer!

    Go with God and KEEP KICKIN’ THAT cancer.

    Margaret

    in reply to: My Husband and Cholangiocarcinoma #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

    in reply to: Lainy Update #34801
    mlepp0416
    Participant

    Lainy,
    Do you have high cholesteral (sp)? Tom also does and for years he was on ‘statin’ drugs to help lower it. But they did not help much to lower it or control it. It wasn’t until they took him off the ‘statin’ drugs and started him on fish oil that his cholesteral levels started coming down. At his last blood work, his cholesteral was 159! He takes 2,000 mg of fish oil in the am and 2,000 mg in the evening and it’s doing wonders for him! While he was on the ‘statin’ drugs his cholesteral was always between 300 and 400!

    Margaret

Viewing 15 posts - 676 through 690 (of 726 total)