My Husband and Cholangiocarcinoma
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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
Actually, it has not been too bad for us although all our co-pays just raised dramatically. When Teddy first got sick we were visiting kids in Milwaukee and he spent almost 3 months in the hospital, had an aborted Whipple, the real Whipple, a double e-coli infection (hospitalized) and total cost for us was less than 5,000.00 so I am not complaining! My surgery last October was a 4 hour surgery, hospital stay of a week and total for us was 700.00. Again not bad. So, that way we are very lucky. Teddy has a PET March 17th and I think the co-pay is up to 200.00. But what really got us is he had a stent exchange last Friday as when his cancer returned a year ago that and scar tissue pushed his right ureter closed. SO he has to have the stent exchanges forever. Anyway
co-pay was 200.00 however the anti biotic pills the Urologist ordered were 10.00 apiece. That is highway robbery! Have no idea where we are headed in the USA as far as health care and help.Lainy wrote:Kate you are right about the Scan in the USA. In December when I thought Teddy’s insurance would not pay, I got on the phone and found a place that does PET Scans for about 1,500.00. Of course the Insurance Company came through at the last minute. Very interesting things he told you on the other stuff.Does the insurance company pay up for most things associated with CC? It must be terribly worrying if you have not got the right cover?
Another thing they asked my dad was ‘have you ever visited a sex worker?’.
Dad works for the education authority and with education/social workers/sex education teachers etc and said ‘of course, they just sit around the corner from me in the next office’ in some confusion. The doctor was equally confused until they figured out that my dad doesn’t share his offices with prostitutes.
Margaret, I just wondered how Tom is, are things any better from last week? My dad starts on his Xeloda today, so getting him stocked up with udder balm, blueberries, gatorade, and all manner of things that I’ve read about…
Kate you are right about the Scan in the USA. In December when I thought Teddy’s insurance would not pay, I got on the phone and found a place that does PET Scans for about 1,500.00. Of course the Insurance Company came through at the last minute. Very interesting things he told you on the other stuff.
marions wrote:These are some of things I have learned:
Known risk factors for cholangiocarcinoma include
primary sclerosing cholangitis (an inflammatory disease of the bile ducts), congenital liver malformations,
infection with the parasitic liver flukes Opisthorchis viverrini or Clonorchis sinensis,
and exposure to Thorotrast (thorium dioxide), a chemical formerly used in medical imaging.
However, most patients with cholangiocarcinoma have no specific risk factors.
Approximately 7,200 new patients are diagnosed with cancer of the biliary tract (the gallbladder and bile ducts) each year, in the US. It is the second most common cancer of the liver and approximately, each year, about 3600 people will die of biliary tract cancer; accounting to about 1% of all cancer deaths.
When Pauline and I attended the World Conference of Gastrointestinal Cancer in Barcelona we learned that the occurrence of Cholangiocarcinoma is estimated to be near 3% world wide.
Multiple studies have documented a steady increase in the incidence of intrahepatic cholangiocarcinoma over the past several decades with the reasons unclear. Improved diagnostic methods may be partially responsible. Taiwan has the highest incidence of this cancer.
Just a few more thoughts to share with the hope that others will follow with more information.
Best to all,
MarionTwo or three things that our surgeon said at Leeds struck me as interesting 1. There is a ‘mini-epidemic of CC’ along the Humber estuary of the UK, which is where lots of petrochemical and manufacturing industry has been situated.
2 He also said that in the US it is possible to pay for a scan even without being referred with symptoms, so some people are having it picked up much earlier.
3. He was also interested in the fact that my dad’s father had returned home jaundiced from WWII – he had put it down to hepatitis of some sort.Hello, Moonchaser, and fellow tarheel. So is Cherbourg. Its amazing the stories that find there way here. You will find a certain and sincere peace in this wonderful family. Like you, I’m sorta new, but it didn’t take me long to find love and good will among these wonderful folks. Keep loving your uncle, believing in miracles, and sharing your journey. You’ll find us all willing to help carry your burden.
Hi.. My Name is Tammy… I’m new at this.. Just found out my Uncle has this.. He is suppose to start treatment late next week… I’m worried that it’s not going to work and he only has 2 more months…
Hi Margaret,
Sorry to hear that Tom’s stent placement wasn’t able to go as planned today. I hope that going to Madison will bring some better news for you both and I will keep my fingers crossed for you both.
My best wishes to you and Tom,
Gavin
Dang it ,Margaret. I was just wondering if you had considered Mayo in MN.
You might just get a back up answer from them. I am sure you will regroup your thoughts over the weekend and Kick A– again on Monday! I know the bag thing well and you are right, its a necessity now and in a way thank goodness for the bag. You have people all over the World cheering for you so start kick’in.Margaret & Tom,
Sorry to hear things didn’t work out today. I’m glad you have a good attitude to help you KEEP KICKIN’ THAT CANCER!!!!!!!
Darla
ARGHHH! Depressed!
The doc’s were unable to place the Stent in Tom’s liver. The Doc saw two pinholes, but they did not lead anyplace. He said sometimes the tumor can ‘destroy’ the bile duct. However, some bile is getting into his system. Hummm, Tom is a rare guy, he grew a new lateral artery to feed a blood supply to the left side of his heart after his heart attack, so maybe the liver has now grown a new bile duct??? (who knows)
Doc talked about ‘capping’ the drain and seeing what happens but he is worried about compromising Tom’s …health, so he’s not doing that. He said that sometimes when they are unsuccessful here in Green Bay, they will refer the patient to Madison. We have asked for him to refer Tom to Madison. (we’ll see what happens) So for now and for however long he needs it, Tom will still have the external drain.
Tom handled it pretty well but we were both pretty prepared that it would not be successful. The most important thing is that the drain bag and tube are serving a purpose and that is working. As I said to Tom “It’s an inconvenience, but it’s serving a purpose and working so for now, you still have your girlfriend with you where ever you go and we’ll take the next steps whatever that may be”.
Go with God, and we will KEEP KICKIN’ THAT cancer.
Margaret and Tom
Hi Margaret,
Great news on Tom’s bili levels falling and thanks for sharing this with us all. I hope that the stent placement went well today for Tom. And a great sense of humour is such a good thing to have and that got my dad through some tough times.
A tube burning party sounds like a great idea!
Keep laughing and kicking it!
Best wishes to you and Tom,
Gavin
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