My Husband and Cholangiocarcinoma
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Hi Margaret,
Great news about the holiday! I so hope that you and Tom will enjoy it, it sounds good to me!
Best wishes,
Gavin
Thanks for all the support that this site brings to CC patients and their caregivers. Couldn’t do it without ALL of you!
The trip to Flordia is booked! Can’t wait to get on that plane, and Tom is going with me if I have to carry him (but will have the airports have a wheelchair ready when we land!)
Go with God and KEEP KICKIN’ THAT cancer…
9 months and counting!
Margaret,
I also hate you also had to find this website but it has made a big diiference in my life. Hope things will be looking up soon. The Lord works in mysterious ways so keep praying and stay positive. You will be in our thoughts and prayers.
Charley
uand prayerHi Margaret,
Great to hear from you and thanks for the update on Tom. I am keeping everything crossed for Tom and hope that you get some good news from the CT scan and that they can get a stent placed and lose the drain bag! Hopefully you will both be able to take that holiday in September to Florida and I’m sure that it will both do you some good!
Best wishes to you and Tom,
Gavin
Margaret,
It just goes to show you that MOST of the diagnoses we’ve seen on this site are not correct. So, it pays to not get too tied up in the “time” they say we have, and just live your life, gain more knowledge about what’s happening to us and try to beat it as best we can. If we hold out long enough, they will continue to find more treatments. Good luck on your trip and best wishes on the outcome of the CT.
Linda
Margaret…..wonderful news. I so much hope for Tom to rid himself of the bag and I am crossing my fingers for the CT scan to prove a go-ahead for placement of the stent. And, don’t forget to take along a pillow for Tom while traveling.
Best wishes,
MarionHi Y’all:
Just thought it was time to update everyone on Tom. He has finished his last round of chemo (Xeloda) and went for his CTSCAN today. Naturally we won’t know the results for another few days. His oncologist is pretty certain that with the tumor shrinkage that she has seen after the last two rounds of chemo that they may be able to get a smaller stent into the bile duct. Originally they were going for a very long stent that would go from above the tumor down into the intestine, now she is shooting for a small stent that will just open up the bile duct at the site of the tumor so that he will be able to ‘loose’ the dratted external drain bag (his girlfriend). So we’ll keep our fingers and toes crossed!!!
This last round of chemo did not seem to affect Tom very much, he was more awake then other times when he was on chemo. He still continues to take pain medication for his stiff joints (reuhmatoid arthritis) (sp?) along with advil and that seems to help him greatly.
I have vacation the first full week of September and am looking into booking a flight to take him to Flordia to visit is deceased brothers daughter. It may be our last fun vacation together as riding in a car is too painful for him (he’s skin and bones with no meat on his butt!) But a few hours in a plane and the opportunity to spend about 7 days in Flordia may do him a world of good.
Once we know the next steps and the result of the scan I will let you all know.
Go with God and KEEP KICKIN that cancer! Did I mention that Tom has passed his old oncologist dire prediction of 6 months? We are now in the 9th month of life since Dr. Shing at the Iron Mountain Veterans Hospita told him that he had 6 months. Just goes to show what they really DON’T know!
Love you all,
Margaret and TomHi Margaret,
Yayyyyyyyy for this great news! i’m so happy to hear that things are going well.
Love to you both,
Kristin
Hi Margaret,
What great news indeed!!! Excellent stuff and I hope that all goes well for Tom with the next 2 rounds of chemo. Fingers crossed for more shrinkage and that they can get the stent inserted.
As you said, a rollercoaster ride indeed!!
Best wishes to you and Tom,
Gavin
Margaret….I can’t express it as well as Lainy does however, I am also thrilled to hear about the great developments. You are so right in that this disease and everything with it can be a rollercoaster ride….we love the highs.
Congratulations and good luck.
Best wishes,
MarionYEAH! GO PACK GO! GO BADGERS GO! GO TOM GO! We are still hoping to see you August 4th! That news made my week.
GOOD NEWS this week.
Tom’s oncologist said that the tumor has shrunk. Original tumor was 1.5cm and after CTSCAN on Monday, she reports that the tumor has shrunk to 1cm.
So, two more rounds of chemo, 2 weeks on one week off. GO CHEMO! And if the tumor shrinks even more, then they will try again (possibly in two months) to get the stent internalized.
Doc thinks that they will try an ERCP and stent only the portion of the bile duct that is affected by the tumor. They will not try to place a stent from above the tumor down into the intestine, just the portion of the bile duct where the tumor is closing it off.
The other two bile ducts ARE working well and draining the bulk of the bile into the intestines. MORE TO COME HOPEFULLY two months down the road!
Doc did say that “This has turned out FAR BETTER than I thought it would back in December when I first saw you”. We have lots of hope once again. That is the crazy thing with this cancer, no one KNOWS what to expect! (see it is a roller coaster ride!)
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
To Margaret and Tom
So sorry that your procedure was not a success.My Mum had two attempts to relieve the blockage by ERCP Not successful.Third attempt external drainage bag left in for some days. Fourth and final attempt metal stent fitted.It was inserted percutaneous through the liver with only mild sedation.Pray to God it doesn’t block up any time soon.She has been through enough for a spell.
I believe you can get good harnesses to wear to support the bag and it should be not too visible under clothing.
In Mum’s case as a lady with bras and breasts to deal with,I am so glad they managed to get a stent in her.
She is not doing too well at the moment .Maybe when the news of diagnosis is not so new she will pick up a little.We all love her so and want her to enjoy the summer.
ScottsMum
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