betsy

Hi Karen,

I think its a good idea to get a second opinion I, too, had intrahepatic cholangiocarcinoma and a liver resection in 2009. Except for a couple of months, I have had 2-3 external drains since 2009. I’ve never had an internal stent – my doctor said they can be more problematic because they move and can stop working. So, we’ve never tried it.

I sent all of my records to The Mayo Clinic in Minnesota for a second opinion and they said to stay with the Cleveland Clinic…….the Mayo Clinic would be treating me the same way.

You could ask for a consult at the Clinic;

Dr. Mark Sands, Interventional Radiology

Betsy

Hi Susie,

My liver enzymes were normal before my resection and very high afterwards. My doctor wasn’t concerned either and said it was normal because of inflammation from the surgery. Also, CA19-9, normal before surgery, high afterward.

Betsy

Hi Mary –

I complained of a swelling in my belly to my surgeon (who by the way, said I just needed to build up muscle tone in my abdomen and should try doing sit-ups!) for several months before he finally turned me over to an interventional radiologist. By that time I could barely bend over and tie my shoes – it felt like a basketball was in my gut. The radiologist drained off some of the fluid. In the meantime he also put me on lasix which helped with the ascites within several days.

I don’t know if my situation is close to Tom’s but I hope it helps.

Betsy
xxxxooo

Dear Mary,
Those drains can be such a pain in the behind. It took a couple of tries before mine starting flowing without problems. I’m so hopeful the doctors get this issue resolved quickly. I think he will feel much better once he is draining properly. Tom has always had an internal drain, right? Does he have an external drain now? I do know of a way to try to get the drain flowing again. I can email it to you if you like.

Betsy
xxxoo

Hi Eileen,
Sorry for calling you Sara! Eileen, I got a second opinion from the Mayo Clinic but it was for a chronic bile duct issue that goes back to resection – not for cancer. However, I was able to send the records and talk to the doctor on the phone. I think bigger hopsitals are giving second opinions that way now. I think its a good hopsital to start with because they were one of the first hospitals to do liver transplants for CC patients – something the Clinic has never done.

Its so disheartening when a doctor doesnt recognize you. Here you are going through this major crisis and your case and life is all in a days work for the doctor. On the other hand, the doctors are swamped with cases and only allowed small amount of time to meet with patients. Its like a factory. I honestly don’t know how more mistakes are not made. But I did ask around the Clinic about Dr. Pelley and was told you either love him or hate him.

Betsy

Hi Wallsm1
I too had the same results from my resection in Jan. 2009. I am still cancer-free. The oncologist I saw told the exact same thing – 50% the first year and the percentages go down from there. The first year was difficult for me. The doctors kept checking for a recurrence and I was holding my breath. Its been 2-1/2 years and I am still here. I did not receive chemo.

Betsy

Hi Mary!
So glad to hear from you. That’s such a drag that Tom’s been hospitalized 2 times with cholangitis. I feel for him. Such GOOD news that he is still cancer-free! I am too. However, its a little bittersweet because I’m still having bile duct issues. Still attached to all 3 bags. The doctors tried using a fibrin glue to seal the leak but it didn’t work. 3 weeks ago they injected alcohol into the area of the leak. The idea is that the alcohol will kill the cells surrounding the leak and then the area will scar over. I don’t know if it is working or not. The procedures take a lot out of me and I’m really losing my appetite for them. Just about the time I’ve recovered, its time to go back in to try something else.

My doctors tell me not to lose hope. They seem to keep coming up with different things to try. Meanwhile, I’ve applied to graduate school in the Fall and am hoping I’ll be well enough to attend. It would be great to use my brain again!

How’s everything with you?

Hugs,
Betsy

Hi Val,
So good to hear from you. Anymore, I start the fear the worst when someone stops posting. Your recent hospitalizations sound very scary. So sorry to hear you have been so sick but I join the others in saying I’m glad you’re feeling better, very glad you are still here and you are one tough cookie. XO

Unfortunately, I’m still stuck with my 3 drainage bags. My doctors tell me a fistula has formed. They injected a fibrin glue into the leak but the bile ate it away. Last week, they tried injecting pure alcohol into the leak hoping to kill the cells lining the fistula – then that whole area would collapse and the leak would stop. So far, it doesn’t seem to be working either. I have more drainage now than I did before the procedure. These procedures take a lot out of me and it takes me about a week before I can get up and about again. I get stuck in this cycle of headaches, nausea and dehydration. My surgeon still wants to avoid surgery because he is not certain he can fix this problem and could potentially make it much worse. So, I guess the plan for now is to try whatever they come up with and hope something works……..my doctor keeps saying, “…in my 13 years of practice, I’ve never had a bile duct leak not heal”. Personally, I think I’m destined for surgery again. I am able to get around o.k. and have energy for simple things before becoming too tired. I may try to go back to school in the Fall….just depends on where I am. Who knows, maybe the fistula will spontaneously heal and this time next year, this will all just be a memory.

Betsy