mlepp0416
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Jim: Hoping for the best outcome. My prayers are with you!
Go with god and KEEP KICKIN’ THAT cancer.
Margaret
This is really interesting….my husband Tom has NEVER had any itching anywhere even when his bilirubin level was 24,600 (24.6) and even when he was extremely yellow. The first indication that there was anything wrong was during his routine blood test when the liver function test came back 10x elevated. Since he was on a cholesterol lowering drug he had blood work every three months. Thank heavens for those blood tests. He was able to have a liver resection three months later and was ‘cancer free’ for about 18 months and then in Nov. ’09 he started turning yellow. Another tumor this one in operable. But he is still here, fighting hard, living in the moment and looking forward to all his tomorrows.
I know that the fact that he never got itchy is a blessing from God cause I’ve heard that it can be horrible. Even his doc’s are amazed that with high bilirubin levels he does not experience the itching!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Sarah: Feel free to rant and rave all you want! There are so many times with my husband that I need to get my thoughts out or else I may strangle him! (JK of course).
You are quite normal in your response to being told that your husband has only a week before passing. Who would not become upset? I was upset then the oncologist told my husband he had 6 months at the most, 15 months ago. As a caregiver, we put all of our energy into taking care of the person who is sick, and we forget about ourselves! I don’t know what I’m going to do with my life ‘after Tom’….for three years now it has been all about him. I know I’m going to be lost for awhile because right now I live, eat, sleep and breathe Tom. When his pills are due, when his tube needs flushing, what to make him to eat, getting him to/from doctor appointments, is he bathed, does he need anything, is he still breathing, etc. You know the routine….and to suddenly face all that ‘caregiving’ being gone, yes it is traumatic! So, dear, you just take all the time you need to rant and rave and we will stand by your side!
I am so sorry to hear about your husband Ben. Please keep us posted on this site. I will add Ben to my prayer list and he will be receiving some prayers from Wisconsin.
Go with God.
MargaretHeartbreaking….I just went to Dave’s caringbridge site and read the updates.
My thoughts and prayers are with Dave and Beth in their journey. We always dread hearing this type of news because it hits awfully close to home when we also have a loved one with CC. Tom has also been fighting high ammonia levels and it is one of the things that scare me the most on this journey.
I will offer up more prayers for Dave.
Margaret
Slight setback this week, Tom now has Pneumonia (sp?) and has two new antibotics to fight that and a neublizer (sp?) which he has to have every 6 hours. They did put some cute little face masks in (fishy and duckie) since these Neublizer’s are generally for little kids. My daughter wants the face masks for her little son who also uses one but does not have the cute face masks! She thinks he may sit better for his treatments with a cute face mask. (Good luck on that!)
I do have to admit that this Pneumonia has really gotten Tom’s spirits down but we had another ‘wifely’ talk last night and I’m hoping to see a quick turn around in his demeanor. I took him out for prime rib in honor of his birthday and our annivesary and he ate quite well. He is also taking the Megastrol which is increasing his appetiete….so other than the Pneumonia all is going pretty well.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Janine: Welcome to the best site for support, ideas, recommendations and FRIENDS!
You may want to avoid a ‘needle biopsy’ if at all possible, I have read on this site that if a needle biopsy is done, it may spead the cancer and also disqualify the patient IF a liver transplant could be an option. I would suggest a ‘brushing’ of the site instead….
My husband Tom just turned 64 and was diagnosed at age 61. His CC was found because of elevated liver enzymes and during his first ever ERCP the used the brush technique to get cells for biopsy, placed a stent and Cholangiocarcinoma was the diagnosis. Three months later he had a successful left liver lobe resection. He developed a bile leak and had drain tubes for 7 1/2 months. He was their star Cholangiocarcinoma patient. His ‘then’ doc’s did not feel chemo / radiation was necessary (Mistake) and 18 months late he started turning yellow. New inoperable tumor in the remaining right liver lobe. He was given 6 months, and 15 months later he is still here with me! He now has an external drain to drain the bile off so he is not quite so yellow. That dratted new tumor is blocking the flow of the bile and they are unable to place an internal stent. Doc’s also feel that between the tumor and the radiation the bile duct is destroyed.
My advice, in addition to the brushing for diagnosis, would be to do your homework, write down all your questions! Find a doctor who has dealt with CC before. When doc’s say ‘we can’t’ or ‘no’ ask what they ‘can do’ and ‘why not?’ (Never take no for an answer!) Mayo clinic, Rochester is an excellent choice for Cholangiocarcinoma patients.
You mom will need an advocate to be with her for all of the tests, etc. If possible bring a small digital tape recorder so you can tape all the meetings with the doctors. It is INVALUABLE! You can then listen to it ‘after the fact’ and it will help to hear it a 2nd or 3rd time. Ask questions because that doctor is working for your mom and you have the right to be fully informed.
Remember above all else, No one has an expiration date stamped on their butt!
Please come back to this site often and keep us informed on your mom!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Karen: Welcome to the site that no one really wants to join, myself included. However now that you are here, please continue reading and learning about CC. No one has an expiration date stamped on their butt!
My husband Tom was given 6 months, and that was 15 months ago! You will learn that CC is just like a roller coaster, lots of twists and turns, ups and downs. My Tom has had a few setbacks after his initial liver resection surgery. 18 months later it was discovered that he had an inoperable tumor (that is when he was given the 6 months timeframe) – he was also not given any other options. We ‘fired’ that oncologist, got more opinons and went with radiation and then oral chemo. The ‘new’ tumor has totally blocked the bile duct and he now has an exernal drain to keep him from being so yellow, but it’s a small price to pay to still have him here with me. He did have some IV chemo for about 2 months, and his new oncologist would like him to continue on that, but he’s pretty much decided that he may not continue with the IV chemo…after fighting this cancer for three years now I think he’s choosing quality over quantity….he’s getting tired of all the doctors poking and prodding! But he may change his mind on that, it’s his choice.
In your mom’s case, get another opinoin with a doctor that is familiar with CC. Do your research, write down your questions to ask the doc’s. What does your mom want? Does she want chemo/radiation? Is she comfortable with her doc? Is surgery a possibility?
Whatever decision your mom makes – it is her choice and you have to be prepared to support her decision. And that may be hard! No one wants to see their parent sick, no one wants their parent to pass on. Even me, with my husband, I still want him to fight this! But only he knows how much he can take, so I stand by whatever decision he makes and support him – but it’s because I love him and do not want him to suffer…
Go with God, prayers coming your mom’s way from Wisconsin.
Margaret
All:
Another MILESTONE! Tom will celebrate his 64th birthday tomorrow 2/11/11. Three years ago when he was first diagnosed with CC we never thought that he would see another birthday, let alone see three more birthdays! And we will also celebrate our tenth wedding anniversary! (Hummm, I can taste that 10 year old wine already)
Just goes to show that doctors do NOT know everything! Tom had an appointment at the VA yesterday and his PCP asked him if he’d seen the VA Oncologist Dr. Sing lately. Tom said “No, but he’s the one that told me that I’d be dead in 6 months” and his PCP replied “Well, that’s probaby why you haven’t seen him then, he thinks you died”. (Sad but true and doesn’t say much about the VA healthcare that they offer to our Veterans!)
So here’s to my hubby “Happy Birthday and I’ll see you next year, same time same station! I Love you more than you will ever know” and “Happy Anniversary Honey…the best 10 years of my life…spent with you!”
To all our friends on this site we salute you for being the most compassionate, caring people that we have ever met!
Go with God and KEEP KICKIN’ THAT cancer!
HUGS
MargaretAWESOME NEWS! I hope everything continues to go well for your dad!
HUGS
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Mayra: I am so sorry for your loss. Words cannot express..
Hugs to you and your little daughter.
MargaretWelcome Cheryl and Herb! So glad you finally decided to post! You will find that the people on this board will fast become part of your ‘family’! My husband Tom also has an inoperable tumor and 15 months ago was told to go home and get his affairs in order. He was given 6 months and here we are at 15 months.
I’m so glad that we did not listen to that oncologist’s dire prognosis. Will Tom be here next year? I don’t know, but for now we live each day and treasure each day that we have, as I’m sure you and Herb and your children do!
Thank you for the wonderful post and tell Herb to KEEP KICKIN’ THAT cancer.
Go with God.
Margaret
Norma….so sorry to hear about your dad’s passing. Words alone cannot express….when my Tom gets there he will have a building and fishing partner waiting for him! Tom has build many a ‘cabin’ during his life and just loved doing that! And fishing, oh my goodness, you have no idea!
Hugs to you and your family.
Margaret
