1

(6 replies, posted in General Discussion)

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

2

(14 replies, posted in General Discussion)

Charlea,

My mum was diagnosed with extrahepatic cc in oct 2007, she was absolutely normal after her bypass surgery and stents without any symptoms till march 2010, she passed away last month. There definitely does seem to be 2 types of cc, one very fast and the other slow.. It hurt me so much when I read posts here about a lot of people dying pretty fast from diagnosis.

You are def lucky to have a slow growing cc, and I pray and hope for your well being!

Varun

3

(16 replies, posted in Introductions!)

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

4

(9 replies, posted in General Discussion)

Thanks so much everyone for the lovely replies! It makes me feel so much better.

Varun

P.S - I'm not a girl, I'm my mum's second son smile

5

(23 replies, posted in Introductions!)

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

6

(9 replies, posted in General Discussion)

Hi everyone,

It's been about 3 days now since mum passed.. it's been very hard for me, i'm thinking about her all the time.

Just thought i'll share what's on my mind:

Mum always did everything for me, she took care of me and brought me up with so much affection and love. This horrible disease took her away from me and my family! She was only 56 years old.. she died at least 10-15 years before she should have! I keep thinking if there was anything else I could have done to save her.

She was diagnosed on 3rd Oct 2007, she passed away on 14th Nov 2010. In these three years, she had 3 stents, 11 cycles of chemo (gemox) and brachytherapy and finally was on an external drain for about 5 months.

In these 3 years we took her to the US, Thailand, Australia and New Zealand for holidays, she always wanted to see all these places.. she saw the birth of her grandson (my nephew), she was also there for my engagement in Aug 2010. This final extension of 3 years of her life were the most satisfying for her and for us. The doctors gave her 8 months to live from her diagnosis.. but she survived 3 years mostly with a good quality of life! But we lost her when we didn't really expect it.. it just went downhill in 3-4 weeks! I love my mum so much.. she's always gonna live in my heart, in our hearts!

I know that she will always take care of me, my finance, my dad, my brother, my sis-in-law and my nephew from wherever she is! She will be my guiding star in life! I love you so much mum from the bottom of my heart!

Thanks everyone for everything! Everyone of you on this site have been an amazing support! Love you all!

Varun

Jemima,

If the primary tumor is in the pancreas, then it's pancreatic cancer and not cholangiocarcinoma.. If it is, then pancreatic cancer can be reversed completely with chemotherapy.. That's what I've read!

Varun

8

(18 replies, posted in General Discussion)

Mum passed away today afternoon in front of us at home, I held her hand when she took her last breath. My whole family was around at this time.

I sincerely thank everyone on this site, for all the support and help. God bless you all!

Varun

9

(7 replies, posted in General Discussion)

Gavin & Marion,

Thanks for responding. The nurse is with her 24 hours, but she of course isn't qualified enough to assess the situation as such. But then mum was in almost the same sleepy, tired condition when the doctor saw her on Tuesday, he told us she's experiencing liver failure and the toxins in the body are all collecting and affecting her brain causing her to be sleepy drowsy all the time (severe end stage liver disease has affected her cerebral function).

He told us that gradually she'll slip into a coma and that's about it. I still haven't got through to the doctor to find out about the IV fluids. This is so hard for my family and me. It pains me so much to see her like this.

10

(7 replies, posted in General Discussion)

Lainy,

Thanks for responding, we have a full time nurse to take care of her. On Tuesday, our doctor told us to take her home and keep her comfortable.. he said there isn't anything we can do now, she's on lasix shots for the ascites and urine. Couldn't get through to him right now to find out about the IV fluids.

Hi everyone,

Mum's condition has deteriorated further, she's asleep all the time, she can't talk at all, she doesn't wake up at all whatsoever, if we sort of nudge her a bit, she only opens her eyes for a second and looks around and again goes back to sleep. But she does recognize us, and nods a bit and occasionally just calls out my name. Her ascites is bad, swollen legs and abdomen, we don't even know if she's in pain.

She's not eating or drinking anything, when we feed her she takes it in her mouth and then falls asleep again with the food in her mouth, we really push her hard and try and wake her up and then she swallows it.

Should we put her on IV fluids? how else can we feed her? has anyone else faced a similar situation? What should we expect now?

Thank you so much.

Varun

Marion & Patty

Thanks so much for helping me out with this!

Varun

I just stumbled upon 'liver dialysis' online.. There's a device to perform certain functions of the liver, basically used for patients waiting for a liver transplant. It cant be used for months or years like kidney dialysis, that's what it says online.. But then can we try for sometime..? It's also available here in Bangalore, just saw online.. Can we try that and buy my mum some time for her liver to maybe recover..?

14

(9 replies, posted in General Discussion)

Thank you everyone for all the support, I really appreciate the help and advice everyone's given me. I'm trying to spend as much time with her as I can, she's become so unresponsive and weak, it troubles me so much, makes me cry all the time, killing me from within! I wish god could take some of my life and give it to her.

She did everything she ever could for me, I remember every moment everything she ever did for me, for my dad and for my brother! It's so upsetting that she's only 56 and I'm just 24, I never ever thought I could lose my mom at this age, always thought I would see her grow old with me!

The hospice movement is still in it's infancy in India, I just checked on that.. we are getting a nurse to stay at home to take care of her.

Thanks everyone for everything!

Varun

15

(9 replies, posted in General Discussion)

Hi everyone,

My mum's condition has worsened, she has high jaundice (bili of 13), ascites, swollen legs and extreme fatigue. She feels very sleepy all the time, and has shortness of breath, she has no strength to even stand and she hardly talks. She has an external drain now since about 5 months. Her bile color is olive green and very thick and not clear. The external drain is only collecting about 30 ml a day, the doc says her liver isn't making enough bile for it to collect more.

He also says she's going through liver failure and we can't do anything about it. He told u to go back home and spend time and give her as much comfort till whatever time she lives instead of running around in the hospital. He says she has maybe days, or at most weeks left.

She's had a good quality of life for almost 2.5 years, and it's been exactly 3 years since diagnosis. I guess this is the end, there is nothing we can do. Is there anything more we can do for her?

I thank everyone for all the support all these years, without this forum we would have been so lost! I thank god that I found you all. But I do wonder, why do such bad things happen to good people?

Varun

16

(6 replies, posted in General Discussion)

Thanks for responding.. I just spoke to the doctor, and he said the same thing that her liver needs to recover from the constant assault it's undergone because of the infection, blockage and antibiotics. But he's not sure if it actually will ever recover, and that we have to accept all this.

She hasnt been checked for any abscess, that's a good point, will take it up with the doctor.

Hope your dad recovers, and I wish you and him all the best!

Varun

17

(6 replies, posted in General Discussion)

Thanks for responding everyone.. They've cultured the bacteria, and also he's finished 2 courses of antibiotics.. But still has fever at least once a day. We just came back home from the hospital, they've drained the fluid out. Doctors say the  drain isn't clogged, and there is infection, but the bilirubin is high because her liver isn't functioning as well because of repeated clogging and infections.

They say we should give it sometime for her liver to heal, and hopefully it will heal! The Fever is better than before, but then they say we can't give get more antibiotics now.. So hopefully tht will subside on it's own! Is there any medication to improve liver function?

18

(6 replies, posted in General Discussion)

Hi everyone, mum's not doing too good.. They couldn't internalize the drain, and she has an external drain now, been about 4 months now.. She's had repeated infection with fever and chills. Her bilirubin levels have gone extremely high with total bilirubin 10 and direct bilirubin 15!

She also has fluid in her abdomen, they are going to take the fluid out tomorrow.. It doesn't seem like we can do much. The bile ducts are not dilated because of the external drain.. But then why does she have such high bilirubin? It got better in between and she was almost normal as recently as 2 months back.. Now her jaundice has gone up again with infection.. Is it because of liver failure? Has her liver started to fail? What can we do now? Chemotherapy or any other treatment option is ruled out because of jaundice and infection.. I'm so lost!

Varun

Hi Marion,

Thanks for responding!

Why would you say my mum's case is one of the more unusual ones? Is it because of the way its progressing? are bypass surgeries not common for cc?

Thanks for all your wishes!

Varun

Hi Gavin,

Good to hear from you too! Mum's undergoing the same thing right now, sudden jaundice and no itching unlike when she got diagnosed in 2007.. any idea why that happens? I never thought she would get jaundice even with all the ducts draining.. strange!

My doctor spoke about cyberknife, he said we could give it a try, and he also said we can try PDT.. but he said it might or might not help.. we never know. Cyberknife and PDT are both available in India (cyberknife was always available here but I didn't know about PDT till my doc told me.. but I think it will be the first time using PDT at least for cc in Bangalore). I also consulted 4 other doctors, one said cyberknife doesn't work for cc.. and others said we can try.. one more said chemo wasn't an option again since she already had chemo (gemox).. one more doc recommended that we should contact one Dr.Nomura in Nagoya, Japan since that's a reference centre where cc cases around the world are directed to ( they supposedly have the most experience dealing with cc in the world). I'm so confused with all these opinions!

Also, i tried contacting hospitals in the UK for PDT, I got information that PDT trials have stopped and is not used as a treatment anymore because of high mortality rates.. is this true?

Thanks so much for responding Gavin! My best wishes for you too!

Varun

Hi everyone,

Mum was in the hospital again last week, she developed cholangitis, and this time the posterior right duct is blocked.. whats surprising is, bilirubin levels were 2.4 on saturday and then it went up to 7 on wednesday, without any itching whatsoever (only 2 ducts on the right lobe are blocked)! Its never been so high except before the bypass surgery almost 3 years back.

They've placed an external drain from the right duct (posterior), and after 2 days did an ultrasound which showed that all the segments were draining ok n there was no block elsewhere. But her bilirubin levels r the same, and eyes and skin are yellow without any itching. Why would the bili levels remain so high despite of all lobes draining? all other liver function tests are normal.. My doc says, he has no idea honestly.. and that we should accept all this.

Mum will be going back again next week, as they will internalise the external drain and see if they can unblock the blocked duct. She went back in just a month after getting another stent place(third one).. my doc says, the tumor is spreading now across the biliary tree and blocking all the ducts, its getting increasingly difficult to manage it now.

Wondering if we should try cyberknife or chemo (gem and cisplatin - a new study has been done which indicates some benefit) or PDT. I'm so lost..  i wish i could take some pain from my mum.. i wish i could give some of my life and health for her!

I thank everyone for all the support.. god bless you all!

Varun

22

(10 replies, posted in General Discussion)

Theresa,

Thanks! Mum is feeling much better now. She's had permanent metal stents all the time (mesh expandable type), she's never had any other type of stents, and it did last for 18 months (jan 2008 was the first stenting, the second was in july 2009). The approx time they say for the stents is 8-10 months, but it all depends upon the growth of the tumor and other factors (biliary sludge, granulation tissue, strictures, etc), so you can never say!

Mum had a CA-19-9 blood test almost 2-3 yrs back (3 months after diagnosis), and it was totally normal and within range. My doc says those kind of tumor marker tests for cc are not reliable, so they can't be used for any kind of diagnosis for cc, they are very high in some people and absolutely normal in others (like my mum). 

Best wishes to you!

Varun

23

(10 replies, posted in General Discussion)

Hi Theresa,

My mum did have brachytherapy after the second stenting, as far as the usefulness of it is concerned, I really don't know for sure. The stent got blocked again after just 9 months after the brachytherapy, whereas the initial stent lasted for 18 months when she had chemo (gemox). We expected it to last much longer, but maybe it did help and the stent would have gotten blocked even sooner if not for that, I have no idea!

They say that brachytherapy is targeted therapy and it really helps since it provides a high dose of radiation in that area killing everything there, I'm not sure if it helped my mom, but maybe it did.

There's no harm in giving it a try, because she didn't have any side effects or anything at all. Also, brachytherapy is possible in only some cases when they can reach the place of the tumor, so if they can reach and provide it, you should go for it!

Let me know if you wanna know anything else.

Varun

24

(4 replies, posted in General Discussion)

Hi Rick,

My mom had metal stenting 3 times (she just got back from one today). As for the patency, the first time it lasted for about 18 months and the second time just 9 months, the third one she just finished. We can never say anything about how long a metal stent can last for.. the clogging can happen because of biliary sludge, granulation tissue, strictures due to radiation and the most common of course is tumor growth.  So you can never say when? why? or how long?

When the stent gets blocked, another stent is inserted throught the previous stent, that's how they unblock it again. Re-stenting is definitely an easier process because an older stent is already there, but you can never say, sometimes complications arise.

As far as i know there is no maintenance or anything for metallic stents because they are permanent and the only thing that can be done is restenting, and the doc told me dilation won't really help. My mum's was done through a PDT or something, so donno about ERCP.

Let me know if you wanna know anything else?

Varun

25

(10 replies, posted in General Discussion)

Hi Ashley,

Thanks for your response. My mum is back home today after a re-stenting was done again (3rd time) and her fever is off and she's feeling fine. So i'm sort of relieved, and I have no idea about PSC, i just googled it, and the symptons were very similar, but the doc never mentioned PSC ever. So i'm really confused about that, and a differential diagnosis is impossible because biopsy from the original tumor is a very risky and difficult thing because it's so embedded inside and is not mass-forming (at least, this is what our doc told us) so we dont have any tumor samples to distinguish cc from PSC. So i have no idea what to do now?  But then, the stent getting blocked repeatedly has to be because of cc right? can it be anything else?

Hope the stent will remain unblocked for a long time! thanks for your time and support!

Varun