mlepp0416
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Lisa:
What name for the caringbridge.org site? My husband Tom has a caringbrige site under thomaslepp. I’ll check your’s out if you post the name.
Thanks,
MargaretCinnamon:
I got chills as I read your dad’s story. I can equate as Tom had some pretty weird room mates while he was inpatient at the Milwaukee VA hospital! His roomate (when they needed his private room for someone who had mersa) urinated on the floor by the sink at about 2am. When I came in at 5am the room reeked of Urine. Nurses and staff in and out of the room, no one cleaned it up. At 9am I went and found the head nurse, brought her into Tom’s room and pointed it out and said “How can anyone get well in this hospital when staff sees and smells something like that and does nothing?” Tom’s doc heard about it and immediately he was moved to the 7th floor and had a wonderful totally remodeled room. My advice, if you have to be at the Milwaukee VA hospital for surgery INSIST on being on the 7th floor!So sorry your dad had such an AWFUL experience. You need to complain to the hospital and maybe (ha) they will give him a break on the bill…
Prayers coming your dads way as always
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Gettingby:
Thanks for the advice on the Pineapple juice – my husband Tom has CC and is starting on Xleoda tomorrow! I’m going to the store in the morning to buy some pineapple juice for him!
Margaret
Great News Today!
Tom’s Bilirubin level is down to 6.6 and his cancer doctor (The one who runs the show) has made the decision that he can start chemo tomorrow. Because of his much lower bilirubin level she feels that the tumor has shrunk enough that he can start it now before the liver is stented (Gawd, I hope she is right!) Instead of 6 Xeloda pills 2x a day she has decided that he should take 5 pills 2x a day, and I think this is because of his weight.
She also gave him some new pain pills Tramadol 50mg which should hopefully not cause the swelling of his feet like Vicodin was doing. We finally figured out that the feet swelling was caused by the Vicodin. He didn’t need to take any vicodin for about two days and his feet went back to normal, but once he started taking it again…the feet started to swell.
Has anyone else on this site experienced edema of the feet while taking Vicodin?
She also prescribed Ondansetron ODT 4 mg tablets – take one tablet 30 minutes before chemotherapy. This tablet is placed on the tongue to dissolve. He has 10 tablets at a cost of $110.00. At over $10.00 a pill or $20.00 a day I certainly hope that they work!
Has anyone had any experience with Ondansetron for nausea and if so how did it work?
Now onto the Xeloda (Capecetabine) – what can I as his caretaker expect him to be experiencing? His doc told us to watch for Fever, bleeding, headaches and new pain…
What have others who have taken Xeloda in pill form experienced? Hair loss? (I’m actually looking forward to loosing my hair if he looses his!) Nausea? If so, how bad? Vomiting or just feeling nauseated? How soon can one expected to start feeling nauseated after starting the pills? Hours, days, weeks? Has anyone experienced any of the symptoms that the doc told us to watch for while on Xleoda? Are there any foods that will either help with nausea or prevent it from happening?
Looking for any advice as we start the next phase of our journey with CC.
Thanks,
Go with God and KEEP KICKIN’ THAT cancer.Margaret
Sometimes the shakes and chills and night sweats can indicate some kind of infection going on in the body. I agree with Lisa that a Doctor visit for some blood work to check the white blood count, that will indicate if there is some type infection going on. These were the thing that they told us to watch for in my husband Tom.
Hope all turns out well and your husband feels better soon! This CC Journey is throwing a lot of twists and turns and bumps our way.
Go with God and KEEP KICKIN’ THAT cancer
Margaret
My husband and I have Humana insurance. In network we have a $2,700 deductible then it covers at 100%. Last year my insurance paid $325,000 for Tom’s three week stay in the hospital when he had his liver resection. My insurance has never questioned anything that he has had done. He has had multiple ERCP’s, Diagnostic Tests, including CTScans and PETscans. He’s had numerous ER visits and multiple types of surgeries. To date, everything has been paid, over $1.5 million dollars (probably closer to $2million). And I have an unlimited lifetime max. I don’t know that healthcare reform (public option or government run insurance) could top what I now have through my employer.
Tomf:
Hang in there! We are all pulling and praying for you! Your journey is beginning to sound like my hubby’s (Tom) journey. Just about the time we think we’ll have a few days of smooth sailing, something else pops up out of nowhere.
I can equate to the foley cath as my Tom now has one too (due to a kidney stone) that they had to go in and blast. He has a kidney stent too but that will all come out on Monday.
The weight is really an issue for my Tom as well. He’s lost so much muscle tone that he looks like he’s loosing weight but he’s been staying at about 128 or so. He’s been on antibotics so much the past two months that he has no appetite. I have got to get him some high protein foods to eat!
Hang in there guy! Prayers from Wisconsin are coming your way!
KEEP KICKIN’ THAT cancer.
Margaret
Lu2,
Welcome to the best CC site on the internet. Like me, I’m sure that you did not want to join this site.
I am my husband’s caretaker. You can read about his journey with CC under my login name mlepp0416 (My husband and cholangiocarcinoma)
Tom was also feeling fine and had no sypmtoms back in Mar 2008 when his routine blood tests revealed elevated liver enzymes. In May 2008 it was diagnosed as CC. In June 2008 3/4 of his liver was removed. After a 7 1/2 month recovery (he had a bile leak after surgery) everything was progressing well. In Nov 2009 he developed jaundice. A new tumor in the remaining biliary tree also involving the artery. Inoperable. Bilirubin climbed to 24.7…
His oncologist told him to basically go home and die, and that he maybe had 6 months. We got new doctors and after 28 radiation treatments his bilirubin level is now down to 8.1. The journey presented many twists and turns and many bumps in the road. But we are fighting the good fight.
No one has an expiration date stamped on the bottom of their feet or on their butt!
My advice would be to do all the research that you can. Ask all the questions that you can think of (write them down as you think of them!) Get 2nd and 3rd opinoins!
Get your dad to visit this site and read the success stories, or print them for your dad. Many of the people on this site were told that they have 6 months and many of those same people are proving their doctors WRONG!
There are many oncologist who have never encountered this type of cancer and it seems like they use the 6 months because they don’t know any better! Tom is now in month three and things are starting to look better for him. His new oncologist tells us that the tumor has shrunk. He may never be ‘cured’ but they feel that they can get him into remission! His next step is to get an internal stent placed in the liver and then he can start Chemo (Xleoda) which is a chemo drug that I see on this site that many CC patients are on.
Stay optomistic! I’m a firm believer in the power of prayer. Spend quality time with your dad, be there for him. Even if it’s just to sit there and hold his hand or watch TV with him. Remember that whoever is his main caretaker may need a break now and again so offer to help clean house or sit with dad so that person can go do something fun.
Our kids come over about every two weeks and just clean the house! We even get the grandkids involved with dusting and vacumning. They know that with caring for Tom and working full time that I simply do not have enough time or energy left to do simple things like housecleaning! It’s a godsend let me tell you!
Make some meals that can be frozen and then put into the oven for a quick easy meal. Tom likes pea soup (it’s easy on his stomach) so one of our friends makes pea soup and freezes it in small containers. That way when I’m at work, Tom can heat it in the microwave and have it for lunch.
All these little inexpensive things with help with your dad’s (and his caretaker’s) Quality of life.
Prayers from Wisconsin are coming your dad’s way!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
April,
So sorry to hear about your mom. You have to stay positive for your mom. This site is the best site for CC on the internet. I am my husband’s caretaker and this site has given me the courage that I need to continue to be upbeat and optomistic for my husband.I often print and read other’s posts on this site to help give Tom the encouragement to continue fighting the good fight against this terrible disease.
Have you and your mom considered getting second opinoins?
My advice would be to do all the research that you can, ask all the questions that you can think of. Never take no for an answer. If you feel that your mom is not getting the care she deserves then run to another doctor!
My husband has not encountered ascites but he has had many bumps in the road in his journey with CC. You can read about his journey under my login name mlepp0416 (My husband and cholangiocarcinoma).
His original oncologist told him to go home and get his affairs in order and that radiation and chemo would not work. We did not accept that. (never take no for an answer). His bilirubin level went to 24.7. After 28 radiation treatments his bilirubin is now down to 8.1.
I have read many posts of success on this site. There are many people who are proving their doctors wrong! Remember that people do NOT have an expiration date stamped on the bottom of their feet or on their butt. And keep in mind, that there are not many doctors or oncologist that have ever encountered this type of cancer.
Tom’s original oncologist had never seen anyone with this type cancer (and he was an Asian Doctor) and he simply did not know how to try to fight it so he took the easy way out and basically told him to go home and die.
Prayers will be coming your mom’s way from Wisconsin!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Shonny:
Welcome to the best CC site on the internet. I’m certain that you, like me, didn’t really want to become a member of this site.
Your sister is lucky to have you in her corner! As a caregiver to my husband Tom who is also fighting this terrible cancer, the one thing that I can tell you is to take it one day at a time and be grateful for the time that you have with your sister. One never knows what twists and turns this cancer is going to take.
One day you may get good news and the next day it may not be so good. But we have to take the good with the bad.
My advice would be:
1) Do all the research you can, the internet is wonderful for that.
2) Write down all the questions you can think of. There is no such thing as a dumb question
3) Ask all those questions of your sisters doctors
4) Never take no for an answer, there is always something that can be done
5) Think outside the box and ask your sisters doctors to do the same
6) Don’t be afraid to seek 2nd and 3rd opinoins. Your sister’s doctor may be wonderful but you need to see if other doctors have the same opinoin as he/she does. You may be surprised!Case in point for number 6 on my list. Tom’s original oncologist told him to go home and get his affairs in order and that he would give him 6 months. His reoccurance of a tumor is inoperable. He said that chemo and radiation would not help. His bilirubin level was at 9.2 at that time.
After getting more opinoins, etc. he started on radiation and his bilirubin level kept climbing. At his all time high of 24.7 and with an external drain tube his bilirubin level started coming down. After 28 radiation treatments his bilirubin level in now down to 8.1, his yellow color is almost gone. His radiation oncologist has told us that the tumor has shrunk. Next step is to stent the liver and then he starts on chemo. We are going for broke on this fight!
Prayers are coming your sister’s way from Wisconsin.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Marianne:
I will echo what others have stated, welcome to the best CC web site on the internet. Like me, I’m certain that you did not want to join this site. Two years ago CC was not a word in my vocabulary.
My husband Tom was diagnosed in March 08, had a liver resection in June 08 and was told he was cancer free, no chemo, no radiation. We lived on through his very long recovery (bile leak and a drain tube for 7 1/2 months) We had a great spring, summer and fall of ’09.
Tom started turning yellow in Nov ’09. A CTscan revealed a new tumor in the middle of his remaining biliary tree. It involved the hepatic artery and it is inoperable. I know the shock that you are going through because we felt the same way. His original oncologist gave us NO HOPE whatsoever. He said that chemo and radiation would not work. We RAN for 2nd and 3rd opinoins.
Needless to say, after 28 radiation treatments, his bilirubin level which was up to 24.7 is now down to 8.1. Not normal yet but a lot closer than it was. His yellow color is almost gone (I kind of liked having big bird living in my house, tee hee)
I’m a bit amazed that your dad’s doctors feel a liver transplant would be an option but heck go for it! All Tom’s doctors said that they don’t transplant liver cancer as a general rule because liver’s are hard to come by and most often liver cancer returns even to a new liver. (I may have to do a lot more research on this!)
But, given Tom’s other issues, he would not likely be a candiate anyway as he has other underlying health issues such as diabetes, PAD and Coranary Artery disease, and has had a stroke and heart attack. (all that rules him out I feel)
Keep us posted on what your dad finds out at Mayo!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Chuck, you hang in there, I have already posted on Christina1’s post and I’m certain she relayed my message to you! After what you have already been through, a colon resection should be a cake walk for you!
Prayers are coming your way from Wisconsin!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
What a wonderful story, so happy for your mom! The liver enzyme tests were what showed that my husband Tom had something wrong too. That goodness for those tests. I think everyone should have those liver enzymes tested as a matter of routine! Tom was also on a cholesteral lowering drug and because of that he had his liver function tests done every three months. Without them they would have not known that something was wrong and it would have been many months before he was diagnosed.
Prayers coming your mom’s way from Wisconsin!
Go with God and KEEP KICKIN’ THAT cancer.Margaret
Lainy, yes I am the official bag lady now. Too funny! I had a good laugh when I read that. But if you had to do it for Teddy, I can do it for Tommy!
Patty, Tom will be slaying the foley cath on Monday (He hates it) but is now resigned to the fact that it is a necessary evil. The worst thing is the Kidney spasms that he is now having. The kidney was so swollen that it’s having some issues as it starts working correctly again. But like I told Tom, he’s climbed the mountain already, this should be a cake walk for him!
Love you guys! Thanks for brightening my day!
Margaret
