varun_tholasi

Hi Libeco,

I’m so sorry you had to find us, I understand what you are going through. My
Mum also had a bypass surgery along with metal stents and it worked for almost 2.5 years.. For about 6 months she had an external drain so I do have some information on how to handle external drains. Coming to your questions:

1. External drains are def more prone to infections which lead to cholangitis (bile duct inflammation due to infection) but then keeping the area dry and clean really helps. My advice for you is to keep checking the dressing to see if it’s wet and gooey, if it is then get it changed as often as required by a qualified nurse. I do think it’s better to have a nurse who’s got some experience with external drains, etc. Also I learnt to change the dressing and sort of clean up the area myself. I don’t know about any redness near the area, I don’t think it’s a cause of concern but do check with the doctor.

2. Chemotherapy at low doses is not recommended since it won’t be effective, that’s what my doctor told me. Also if he has high jaundice chemotherapy is not suggested at all. He’s 88 and I can’t say how he would be able to take any side effects of chemotherapy as well.

3. The end stage is very difficult to say, for my mum she had high jaundice, ascites ( fluid collection in her abdomen and legs) and she stRted feeling very tired, didn’t eat much, slowly became immobile and then lost her consciousness. Basically these are symptoms of end stage liver disease, I can’t say exactly about your dad because it’s different for each person.

4. Cherish every second you have with him, talk to him about all the good things, make him laugh and feel better and that you are there for him. The one comfort they will get is seeing loved ones around them happy with their lives, and being by their side.

I wish you and your dad, mum all the best!

Varun

Hi Julie,

I’m sorry about your mum! I just wanted to give you some advice:

1. Have you got a liver function test done recently after placing the external drains? it’ll tell if the drains are working, if her bilirubin is coming down which is important.

2. Is surgery possible if the bilirubin levels come down? is that the only reason she hasn’t been taken into surgery yet? find out from the doctor.

3. Find out from the doctor about stents to unblock the bile ducts, if they are required.. I’m not sure if they’ll stent the bile ducts before surgery.

4. If surgery isn’t possible discuss the possiblity of starting chemotherapy with an oncologist (bilirubin levels need to be low to start chemo).

5. Can you give us more information about your mum’s condition.. where exactly are all the tumors seen? what are her symptoms?

Be strong and always remember, never lose hope! My mum was diagnosed in 2007, and the doctors gave her 8 months but she went on for 3 years mostly with a very good quality of life! Also make sure you take a second or even a third opinion.

I wish you and your mom all the best!

Varun

Hi Ziggy,

What chemo regime is your husband on? Does he have any stents in place to relieve any blockages? Why does your doctor think a transplant isn’t a viable option? does it involve the blood vessels?

My mum was on 11 cycles of gemox (gemcitabine & oxiplatin) and she never really had any adverse side effects. The time she had her chemo, her stents were patent for almost 18 months.. so I would think chemo definitely helped. I also think your husband should start trying alternate therapies (homepathy or ayurvedic, etc).. my mum started homeo and ayurvedic too late, that’s what I think.. I’ve heard of these alternate therapies working.

I feel that his fatigue could be because his liver has taken a beating because of the disease as well as the chemo. He can also start taking milk thistle and dandeloin tablets from Nutrilite, which helps in the functioning and regeneration of the liver.

Varun