Dad diagnosed with extraheptic Cholangiocarcinoma
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Manish,
I am very new to all of this too and my father has cholangiocarcinoma too. He is 88 and has not been able to rest through either a night or day. He wakes like yours many times a night and only cat naps during the day. Mom reports he is very exhausted but can’t sleep. I wasn’t sure if it was due to cancer or due to dealing with knowing about the cancer or I suppose both. I too live far, though not in another country from my parents. I am returning for a visit as I was only able to visit him here and there while in the hospital. Still unsure the direction they are taking as he still has to see the oncologist whom seems to not be free this month! Best wishes and prayers.
hello everyone
I just logged into the site and saw a case that is similar to dat of my mom,but the difference is dat my mom is unaware of the fact dat she is suffering from CC n chemo dosent seem to be a good option in dis case,because my mom is already very weak n apart from dat we need a good mental strength for dat,although my mom is 44 ,she isnt havin too much strength.please everyone do suggest any other option dan chemo.
regards
MohitManish, catching up here. Teddy was told in June that the doctors could do no more. He is 78 today and decided NOT to do chemo, He opted for quality of life versus quantity and felt he has been through enough. After he made his decision all his doctors said he made the right choice. He enjoyed a little Birthday dinner that he could not have taken part in had he been undergoing chemo. With that said, it was a very agonizing decision and a very personal choice. I honestly don’t believe he would still be here if he had gone through more. We have home Hospice coming in 2 times a week and he is doing pretty good for where he is in this journey. Good luck on your decision and please keep us posted.
Manish: As others have said, welcome to the site that no one really wants to join. My husband Tom was 61 when he was diagnosed with CC in May of 2008. He underwent a left lobe resection of the liver. He had no chemo or radiation as they had clean margins.
18 months later, Dec. ’09 he presented with jaundice, a new inoperable tumor in his liver. His oncologist told him that Chemo/Radiation would not help, gave him 6 months to live and sent him home.
We sought 2nd and 3rd opinoins and as a result, he underwent chemo and radiation and the inoperable tumor is now dead. However, they were unable to stent the bile duct, so they put in an external drain bag which relives him of his high bili level which was at 24.9 in Dec. ’09.
At his last CTSCAN, about 4 weeks ago they found 5 new tumors and a met to the pelvic area.
Tom has had one bout with Ascites just after the CTSCAN which was relived with parenthesis (draining of the fluid).
He is now undergoing IV Chemo therapy and at the last blood work, his tumor markers were lower and his bili has gone from 22 down to 17.
So, my advice would be to get a 2nd opinoin if possible. Do your homework and research (This site is a great for research) and when the docs say “NO” or “We can’t” then you need to ask Why/Why Not/ what else can we try?
In my humble opinoin, everyone should have chemo with or without a resection. Tom was first on Xleoda (pill form) and experienced no nausea, no hair loss and very little fatigue. He stated that the radiation was far worse then the chemo. Now that he is on IV Chemo he still has no ill side effects and also states that the IV chemo is not as bad as radiation. However, each person is different.
Remember too that NO ONE has an expiration date stamped on their butt! Doctors can only ‘guess’ as to what they think with happen. Above all, a positive attitude certainly goes a long way in helping a person with CC. Tom will be entering his 12th month of life since the original oncologist told him that he had 6 months! Each day is a blessing and we are building memories that will last me a lifetime.
Tell your father to not put his life on hold, when he is having a good day – enjoy it, do something special. When he is having a bad day, sleep or be lazy and enjoy being pampered, snuggle up on the sofa with a blanket and snooze or watch tv or read a good book. Spend time with loved ones. Build memories.
Please come back to this site often and keep us updated on your dad.
Go with God and KEEP KICKIN’ THAT cancer.
Prayers are coming your dad’s way from Wisconsin.
Margaret
Dear Manish – Chemo treatments are different so it depends which one the doctors might recommend. My husband was on Gemzar for 3 cycles, which is 6 treatments. He had no ill effects. He has had no surgeries as he has been told they are not an option for him. His liver is completely involved with innumerable tumors. With Gemzar, my husband had no nausea, and no hair loss. He was weak before chemo started and he is still weak. He slept a lot before and he sleeps a lot now. He still eats most foods although he says most taste bitter. We have to watch his salt/sodium intake due to ascites. Our prayers and best wishes are with you and your family. Blessings, Susan
hello manish , my mother had also been diagnosed with same problem .we can share views with each other . if u are wiling mail me at npl_2009@rediffmail.com
Manish wrote:Dear All,This is Manish, writing from Reading (UK). I was surfing net for information on CC and was lucky to find this site and you all lovely people. I wonder if there is some hope left for my Dad, something that could still be done in allopathy to extend his life as much as possible. We are already trying alternative treatments including wheat grass juice as well as some herbal medicines.
My Dad was diagnosed with bilary duct cancer in May this year in New Delhi (India). It has spread into liver. The cancer has already blocked the left lobe bilary duct system and is also affecting right one and has reached the point where 3 main bilary ducts join togather to form one big one in the right lobe. (In other words, as Doctor explained to me, if stenting was needed to relieve him of his jaundice, three stents would be needed)
Once he was diagnosed, Doctor tried to see if surgery could be performed but had to give up as it had already spread deep into liver as explained earlier. However in the process, they did manage to remove his gall bladder that had been infected and in their words could have burst any time.
After removal of his Gall bladder, his jaundice did come down (billirubin came down from around 12 point to 3 points or was it 1200 to 300, I’ll get the exact details if required).Doctor also said that chemotherapy may not help at this late stage and that if done, would affect his quality of life.
While we are coming to terms with this development, it is very hard for us to just sit down and wait for inevitable. Wonder if you may be able to provide some information that would help at this stage. Do we need second opinion on Chemotherapy or any other treatment.
He feels tired and gets up at night 3-4 times and doesn’t get that sound sleep that he used to. His jaundice level is at 3 point or 300 and only yesterday had slight fever.
Thank you all for your kindness.
Regards
ManishHi Linda,
Dad is 71 and does feel tired and is resting during the day and does get up 3 – 4 times in night.
Hi Gavin,
Doctor had said that if bili shows upward trend then they’ll try stents.
It seems, Dad’s bili might be increasing as per the Doctor who examined him today. Tomorrow he’ll have blood test and if confirmed, he may have to be taken to Delhi for further treatment and possibly stents.
Manish
Hi Manish,
Thank you for your post and for providing some more information on your dad and his condition. That must be hard for you being in the UK when your dad is in India just now, but as you say, it is good that he has the support of your mum and the rest of the family and his friends in his home town.
One question on the stents. I know you said the doctors would not do it now as your dads bili levels had dropped from 12 to 2, but did they discuss with you the possibility of inserting the stents should your dads bili levels start to increase at some point in the future?
As to the chemo and quality of life issues, I can’t really talk about that as my dad never had chemo. But the issue of quality of life and to have the chemo ot not is one that my dad had to make. He could have had chemo had he wanted it as his first treatment, but we couldn’t be sure that it would work or that it would extend his life. My dad wanted a decent quality of life after his diagnosis so he opted not to have it and had PDT instead as his first treatment with the option maybe of having chemo later down the road. I think the decision to have chemo or not if offered is a common issue for many and as Linda says, it is a decision that each individual has to make based on their own circumstances. Hopefully others will be able to share their own experiences with chemo with you. Good luck with everything and I am sure that your dad will make the right decision for him.
Best wishes to you and your dad,
Gavin
I welcome you here also Manish. Sorry for you and your family, but you are here on a good website seeking information and that is great for everyone.
How your father handles chemo (if given) depends on him. It can depend on side-effects from the CC before chemo. If he’s weak or tired to begin with, the chemo can make you tired too, so that would be a double hit to him. His age may be a factor as I’ve seen some that are older not handle it as well. And then again, if he’s otherwise healthy feeling, and is determined, it may not be so bad. You won’t know until it is tried. However, you can try it and stop it if the side-effects are too difficult.
I was on chemo last July, again in Feb this year and am on a new chemo now. THIS one is making me quite a bit more tired (I’m 53), but no pain. They all have different side-effects, but almost all cause a muscle weakness and/or tiredness.
It is really a decision each needs to make on their own if the doctors offer it. Look up side-effects on this site for different meds. Only your father will be able to tell if he is up for it. And it is possible to prolong life, even if for only a short time, and if side-effects are minimal you can make the decision if it is worth it.
Best of luck to all of you, and hope you gain the knowledge you will need for decisions. Come back often and ask questions if you need to. We will all be here for you.
Linda
Dear All,
Thanks for your support & messages. I am touched by your feelings and these would help me in such dark times.
Dad is at present at his home in Mandi (hilly town about 500 km from Delhi), India and my mum is looking after him along with other relatives who live in the same town. Both mum and dad had come to visit us here in UK last December and went back in May when this was diagnosed in Delhi during his stay with my younger brother & his family.
Its a school holiday season in UK and my son and wife are also with him. Unfortunately, its sad for me as I have to stay back to earn the living and can’t be with him when probably he needs all of us the most.I had visited him soon after his operation for a week and after Doctors didn’t advise for any further treatment (chemo etc.) it was decided that he would be most happy at his home town, where he will have support of so many relatives and other friends. He indeed was very happy once he reached home.
While in Delhi, we had a discussion with Doctors regarding stents. As per Doctors, there was not clinical justification to puty in stent as 3 stents would be needed and there is danger of complication. Moreover Bilirubin level had come down to 2 from 12. However if the level increases, we may have to take him to Delhi again. Can only hope it won’t be too late.
If we decide to go for chemo, what sort of life quality issues, is my Dad going to face. I have been told that it may cause him pain, feeling general unwell etc. We would seriously consider it if it potentially can increase his life even for a few more months.
As you have suggested, we shall look for second opinion.
Manish
Welcome Manish…you are in the right place.
It is good to give your dad wheat greass. There was a study on fermented wheat grass and cancer and it showed to help with symptoms and help chemo work better. The trade name is avemar and there are several studies about it on pubmed.
I cant offer any insight into your dads case, but like MArion always think the more eyes looking over a case and offering suggestions the better.
Take care and let us know how it goes.
Kris
Hello Manish….I would like to follow the others in welcoming you to our site. I am so sorry to hear about your Dad. Your Dad’s current fever may related to the build up of bilirubin in his system therefore, I am wondering why the stents have not been inserted. I also believe for anytime to be a good time to search out other opinions. Perhaps it may be something you would care to do. Of course, you would want to make sure for the physicians to be “very” familiar with this cancer.
Please, stay in touch.
Best wishes,
MarionHi Manish,
Welcome to the site although I’m sorry that you had to find us all, and I am sorry to hear about your dads condition. Where in the UK are you and where is your dad being treated here in the UK? I came here back in 2008 when my dad was diagonsed with inoperable CC and he was diagnosed and treated at Ninewells here in Dundee. I am glad that you have joined us all here as you will get a ton of support and help from us all.
After my dad was diagnosed, he was treated with PDT and had a metal stent inserted as he could not have any surgery or radiation and they hoped to try chemo at a later date. As things turned out, he couldn’t do chemo as the jaundice came back and his bili levels were too high. I can’t remember what the levels were, but they said that they couldn’t do it if they were over a certain level but I’m not sure what the levels had to be. One of the reasons my dad went for the PDT instead of the chemo first is that dad wanted a certain quality of life at his stage and there were no guarantees that the chemo would work, so I know what you are going through right now with your dad and his quality of life issue.
You are right in that coming to terms with this is very hard for all of your family and all of us here have been there where you are now. What might help you right now is having access to a Macmillan nurse. My dad had one and she was great for my dad and would come visit him at home, explain things for him and was great in liasing between the doctors and my dad. Has your dad been offered the services of a Macmillan nurse?
My dad suffered quite a lot fom fatigue and found it difficult to sleep right through the night, even after taking a sleeping tablet some nights. He used to nap a lot through the day and did so for most of the time after his diagnosis, and I think fatigue is quite common with this. Aside from chemo, has your dads doctors mentioned anything about any other types of treatment right now?
I know this is tough Manish, but keep coming back here and let us know how your dad is doing. We are all here for you.
Best wishes to you and your dad,
Gavin
Manish- My dad sounds like he is about the same place. He was diagnosised in May. We are not moving forward anymore. His cancer is in the biliary tract, tissue outside (liver), gall bladder, and head of pancreas. He tried a surgerical resectioin and it was not successful. They didn’t take anything out not even his gallbladder. He is on his second plastic stent and they will not insert another one. They are not even considering a drain bag. His billirubin level is around 8. He was suppose to begin chemo a couple of weeks ago and that was postponed due to infections. We go to the onocologist this Thursday to see if he is still able to have chemo. I think it would be too hard on him. My dad has very little energy and snoozes most of the day off and on. We’ve even had home health hang a saline bag Monday, Wednesday, and Friday for rehydration. They doctors at the hospital want him to go into hospice and he will have to make that decision after talking with the onocolgist Thursday. Best of luck to your dad and you.
Dear Manish – I am so sorry for your news. Our diagnosis is also quite recent. My heart goes out to you and my prayers are with you and your family. I wish I had more to offer but am not that knowledgeable on this topic. I am only knowledgeable about the sadness and the grief of this diagnosis when given to a loved one. Know that there are thoughts with you and your family. slittle
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