mlepp0416
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Rosieinbelair:
Welcome to the best CC site on the internet that I have found. You will find much support and inspiration here as well as gaining many new friends…
Keep asking questions as to what can be done, why it cannot be done, etc and don’t be afraid to seek 2nd and 3rd opinoins is necessary. Above all else, remember that in the end, it’s your dad’s decision as to what he wants to do and what he does not want to do.
Start building those memories and spend quality time with your dad. Remember that no one has an expiration date stamped on their butt!
Your dad has been added to my prayer list.
Margaret (My Husband and Cholangiocarcinoma)
Sduggins:
Welcome to the best CC site on the internet. Like me, I’m certain that you did not want to join. But now that you are here, be prepared for many others to chime in and offer words of support and encouragment.
My husband Tom was diagnosed with CC in March ’08, had a successful liver resection in June ’08 and was considered cancer free. In Nov ’09 he started turning yellow. He has a reoccurance of a biliary tumor, 2.5 cm and this one is inoperable.
Tom has experienced many things during his journey, and his feet started to swell until they were about 4 times normal size. We could not figure out what was causing it until he went off the pain killers. He was taking vicodin and when he stopped that his swelling went away. That is a weird side effect to have, but nontheless, it happened, so no more vicodin for him! Is your husband on any pain killers? If so, it could be one of the side effects.
Is your husband diabetic? The only time that Tom has ‘night sweats’ is when his blood sugars go too low. You may want to check out your husbands blood glucose levels if you have a tester.
After Tom’s reoccurance his original oncologist gave him 6 months. We are now at month 4 and seriously hoping to beat that 6 months diagnosis. I pulled down Tom’s pants and checked his butt for that expiration date and did not find one!!!!
Good luck to you and prayers are coming your husband’s way from Wisconsin!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret (My husband and Cholangiocarcinoma)
Pippa:
No, not that I’m aware of. His ancestory is Belgium and German. His grandparents immigrated to the US from those countries, and he is not certain where his great grandparents immigrated from.
Thanks to all for the well wishes….things are going much better now that his infection has been smacked down!!!
Margaret
Hi Harmony:
I will chime in with the others welcoming you to this site. Feel free to come back as often as necessary.
Prayers are coming your way from Wisconsin. Happy Birthday to your little guy.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret (My husband and Cholangiocarcinoma)
Easy: All I can say is “Wow, when it rains it pours”. My thoughts and prayers are with you and your family.
Learn all you can from this site and ask any questions you can. Never take no for an answer but instead ask what else can be done….
Go with God.
KEEP KICKIN’ THAT cancer.Margaret (My husband and Cholangiocarcinoma)
Hi Bob:
Welcome to the site, my husband who is a vet received his original liver resection at the milwaukee VA medical center. He is currently undergoing treatment at the Vince Lombardi Cancer Center at BayCare Aurora hospital in Green Bay, Wisconsin.
Mayo Clinic does a lot with CC patients and Marshfield Clinic as well.
Prayers are with your dad and your family.
Return to this site often as you will find a lot of good information here.Go with God and tell your dad that prayers from Wisconsin are coming your way.
KEEP KICKIN’ THAT cancer.
Margaret (My Husband and Cholangiocarcinoma)
Bill and Jenny:
Welcome to the best CC site that I have found on the internet. I’m sure that like me you really didn’t want to join, but having said that welcome to the site. You will find lots of support here from others who are either fighting this cancer, or from their caregivers.
Your situation is much like my husband Tom’s. He had 3/4’s of his liver removed in 2008 and had a tumor reoccurance in Nov 09. The new tumor is unresectable. His original oncologist told him to go home and get his affairs in order and gave him 6 months. We found new doctors.
After 28 radiation treatments, an external bile drain bag (aren’t they a joy?) and he has now started chemo. They told him that PDT was not an option for him. They have tried 5 times to place an internal stent and have been unsuccessful, so the external drain bag remains. At one point his bilirubin level was up to 24.7. It is currently down to 4.3.
Tom just spent 5 days in the hospital due to a nasty infection from the biliary tube exchange. He was seriously ill and I thought we may be loosing him, but it was just a bad bump in the road. Infections and hospital visits seem like the ‘norm’ with this cancer. Tom just turned 63 in Feb.
Prayers from Wisconsin are coming your way.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret (My husband and Cholangiocarcinoma)
All:
Isn’t it amazing what 4 days of mega doses of antibotics can do? Tom’s ER report lists his condition as Poor. On Wednesday I thought I might have to start making funeral arrangements. By Thursday I started to be hopeful and thought I could see some light at the end of the tunnel. By Friday I knew we had passed the crisis and Tom is home today! Yippee!!!
He actually had Entercoccal Infection – Enterococcus is a gram positive cocci, but is more like a streptococcus (gram positive cocci in chains) than staph (G+Cocci in clusters). It used to be classified as streptococcus D but has recently been moved to the its own genus, enterococcus. These are normally present in the body but when someone is in the hospital with open wounds they are more susceptible to infection.
Tom had surgery on friday of last week to try and place the stent in the liver, it was unsuccessful and they just ended up doing a tube exchange. With the entercoccus invading his system, by Tuesday he was pretty weakened and starting his downward spiral. We are back up top again and will continue our fight!
He’s back on his chemo regiem starting on Monday, on 14 days now then off 7 days. Has his CTScan on Monday. His doc said a CTscan will show her everything she needs to know.
We also learned that the Vince Lombardi Cancer Center meets every wednesday with a ‘Tumor Board’ and Tom is brought up and discussed every week. Pretty cool that my husband is helping all the doctors and oncologists and staff learn about Cholangiocarcinoma – knowing that his case may help others down the road is huge!
Smiling and dancin today and we’re still KICKIN’ THAT cancer.
Go with God and have a GREAT weekend.
Margaret
All:
Thank you so much, you don’t know how much your words of encouragement mean to both Tom and I. He wanted me to tell you all that he is “so thankful that I’ve found many friends to help me get through this mess that he is in” So thank you from the bottom of our hearts!
They did 4 cultures, blood from each arm (did you know that you can have an infection in only one side of your body?) the urine and the bile and all 4 grew! The doc said that is highly unusual, but it means that the infection is spread throughout his body. They are still growing the cultures to isolate the strain of the virus and see what antibotics will kill it. They currently have him on three different ones to help to keep it in check until they can isolate it.
The good news is that the cancer has NOT SPREAD! Yippee Skipee!!! No evidence of any cancer anywhere else in his body.
He did start to perk up a little bit tonight and I’m hoping to see him smiling when I get there tomorrow. Today he slept most of the day when he wasn’t being taken to places for tests that were not ordered. Ok, I realize that mistakes happen but whatever happened to the doc’s and medical personnel checking the wrist band? He was scheduled for a renal ultrasound today. Transport picked him up at 7:30am (should have been gone for 25 min at the most) After 2 1/2 hours the little wifey is starting to get a tad bit concerned!!!
Just about the time I was going to go start questioning what they did with my hubby, they come wheeling him into the room and tell me that he took a little jaunt down to the basement of the hospital to the GI surgery ward. They actually got him up onto the table, hung an IV and connected it to his IV line and were going to spray something into his mouth to numb it when Tom said “I don’t think I’m supposed to be here” (he was groggy from the sleeping meds yet at this time)… Oh how quick they were to suddenly check his wrist band and realize that they had the wrong person!
Needless to say it was reported to his nurse and the head honcho came in and talked to us. She was appalled that this had happened and said it would be investigated. One of the questions she asked was “And they actually got him up on the table and hooked up an IV?” which was of course “Yes”.
I told her we weren’t going to contact our attorney about it, but they better ensure that going forward, the proper procedures were followed. What if Tom had not said anything??? Would they have proceeded with the procedure? Most likely yes….and that would not have been good.
So, going forward, this little wife will be going with him for any and all procedures to make sure that he only gets what was ordered.
Hoping for a much better day tomorrow. Keep smiling!
Go with God and KEEP KICKIN’ THAT cancer!
Margaret
Kate: We should know the results of the scan by today. Tom has already said that if they tell us that the cancer has spread, he will not resume chemo…and as hard as that will be, I will support him all the way as I know he is making the right decision….for him.
Margaret
Thank you for posting this, it was very informative. I feel that I will be needing this information but hopefully it is a long way off…..
Margaret
My Husband Tom had his liver resection for CC at the Milwaukee VA Hosptial, Dr. Teresa Quinn was his surgeon. She is awesome and came to the VA from Froedert Memorial Hospital in Milwaukee. She has an extensive background in Liver Resections and Liver Transplants. Somewhere down the line, another Veteran may find this useful.
(The VA uses the team approach and many if not all his doctors were from Froedert Memorial Hospital and the Medical College of Wisconsin)
His current treatment is being done at BayCare Aurora Hospital, specifically at the Vince Lombardi Clinic. Dr. Nancy Davis is his oncologist. Dr. David Rhodes is his radiation Oncologist. Dr. Dempsey is his Interventional Radiologist and Dr. Ravi Kondivatti is his Gastrointestional Doctor. (All at BayCare Aurora hospital in Green Bay, Wisconsin)
I can’t help but feeling that Tom is helping all these doctors learn about Cholangiocarcinoma and all of his experiences may be helping others that come down (in this area) with Cholangiocarcinoma.
Margaret
Magic: Thankfully he was not injured when he fell. He has left leg weakness from his stroke in 2005, and with his weight loss he is not as strong and the leg just gave out. (He thought that perhaps he was having another stroke, but they have ruled that out I think)
Marions: They are doing a culture, but no news on that as of yet, sometimes it takes 24/48 hours to grow a culture.
Thanks for keeping him in your prayers, much appreciated.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Kris:
LMAO….Tom too is ‘vain’ about his hair. He said that he’s been growing it for 63 years and doesn’t want to part with it anytime soon. Since he’s started on Chemo, he ‘pulls’ it every day to be sure that it’s staying in place. I’ve told him that my hair is coming off my head when/if he starts loosing his, however he didn’t think I should do that. But I will in support of him. We can grow our hair back together!!! (I have waist length hair which he loves, but like I said, it will grow back)
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Katja and Other Friends:
Tom is currently inpatient at the local hospital. He fell 2x today, once at 3am and then again at about 1:00 pm, he is very weak and dizzy. I left work and took him to the ER. They gave him a bolus in about 20 minutes, took blood work (his bili is elevated a bit from last week up to 6.3) but they tell us that is to be expected after a biliary drain tube exchange (which he had on Friday). They also did a full body scan to see if the cancer has metastasized.
His heart rate was us to 88 BPM which is very high for him, his is normally at about 55 BPM. He’s running a fever of 101.5+ and they were a bit concerned about that. Input and output are being monitored as well as his heart. They have him on IV fluids and IV antibotics. They are suspecting either urinary infection from the kidney stone removal (2 weeks ago) or an infection from the biliary tube exchange last week.
Will know more tomorrow. Meanwhile we’re still workin on KICKIN’ THAT cancer.
Margaret
I suspect that things will level off fairly quickly
