Time for my experience and help (Page 4 of 7)

Hi Carlos,

Good to hear from you again and thank you for your update on your mum. I am glad to hear that your mum is doing well and I so hope that this continues.

My best wishes to you and your mum,

Gavin

It's great to hear from you, Carlos.  I hope the outcome of the Onc visit was good.

Thinking of you & your mum.

Julia x

Carlos, we just never know how things will come about or how we will face them. We just do. I always take the stand that it is what it is now let's get on with some treatment. Some treatment is good as I didn't hear the words "no treatment".  You have done very well up to now and I believe you will continue to do just as good. Please let us know what the outcome is today.

Carlos:  I have just read all the posts about your mom.  I'm very happy that she decided to go with the Chemo.  My husband Tom was able to have a liver resection in June 2008.  His team of doctors decided to not give him chemo after his successful liver resection (where they removed about 80% of his liver) because he had clean margins. My husband is now 63 years old and he was 61 when diagnosed.

In November 2009 he started turning yellow.  An emergency room visit and a ctscan revealed a new 2.5cm tumor in the remaining right biliary tree.  That tumor is inoperable.  His doctors told him to go home and make preparations and gave him a 6 month diagnosis.  We did not accept that and sought 2nd, 3rd and 4th opinoins.  The concenses was that the tumor was inoperable, but unlike his first oncologist, all the others agreed that radiation and chemo were in order and could help his situation.

After 28 radiation treatments, the tumor is dead, and he is continuing with chemotherapy (Xeloda) pill form 5 pills 2x a day.  Unfortunately because even though the tumor is dead it is still blocking the bile duct (as scar tissue) and the doctors are unable to place an internal stent to allow the bile to flow into the intestines.  Some of the bile is getting through but not enough because of his yellow color, so they inserted an external drain through his side into his liver to drain off some of the bile. (It drains into a bag)  This procedure has allowed him to look more normal in color.  We travel to Mayo in one week to have them try to put an internal stent into the liver.  (Mayo is one of the best hospitals in the US and has a lot of experience with CC patients)

My husband's new doctors are now telling us that if he had had chemo after his successful resection he may not be in the position he is in today.  We are now in the 7th month of his 6 month prognosis, so that goes to show that NO ONE has an expiration date stamped on their butt or on the bottoms of their feet.

Go with God and prayers from Green Bay Wisconsin coming your Mom's way.

KEEP KICKIN' THAT cancer.

Margaret (My husband and Cholangiocarcinoma)

Carlos, the is such wonderful news! There is no reason you cannot stay in touch with the Oncologist. Did anyone tell you what her regime will be? Teddy gets monthly LABS and sees the Oncologist every other month. He also gets PET Scans 3 times a year. This way if it returns we are right on top of it.
My only other advise would be to just enjoy each other now as you are very lucky but also keep up your vigilance.

The problem Carlos, is that its like a game and we just hope to choose right and win. Everything is so different for everyone then add to that the fact it is a personal choice to do or not to do chemo. I am so glad you are meeting with the doctor and maybe he can clear some things up for you. As you have probably read on this site some believe in chemo some do not. Ask the doctor what combination he recommends and what the side effects are for each. Ask him his opinion of chemo versus no chemo and of course include the 2 nodes.
This disease sure keeps us on our toes. I would also like to suggest to you to take some breaks and be good to yourself or you will not be good for your mother. I have to admit I wonder what these breaks are? I myself take so few.
I guess I should say," do as I say not as I do!".  Hope your meeting goes well and clears up your questions.

Lainy, Marions. thank you very much for your opinions.They are very appreciated.

Regards;
Carlos

Hi;

Yesterday my mum told me that one month after the completion of chemo she still has stomach swollen. Is this normal?

Next week we have the first appointment with the surgeon after eight months.

Thanks for your time;
Carlos

Hi Gavin;

Then it could be important. In the last scan where the result of the scanner said very shortly "no evidence of disease" oncologist told my mum that there was something (not very important according to her) in the ovaries and that it would be suitable an appointment with thh gynecologist(this thrusday).

I dont know if the swallen stomach could have some reltion with this and not with the last quimio.

By the way, she is doing a normal life and i

Hi;

After appointment with gynecologist, he told her that everything was ok(thank goodness) and the swallen estomach would be for the surgery and quimio.
At the moment the swelling is not really big but this is enough to disturb a litle bit my mom.

As you know next week we have appointment with the surgeon. I hope he can say her what to do about this and  next steps regarding revisions and so on in addition.

Thanks to all of you.

Carlos

Carlos....good luck next week.  Please, keep us posted.
Best wishes,
Marion

Hi Carlos,

Good luck with the surgeon next week, I hope it all goes well for your mum.

Best wishes to you and your mum,

Gavin