Topic: Mum recently diagnosed

Hello everyone. My dear Mum, who will be 79 next week, was diagnosed with cholangiocarcinoma in March. She has had a stent fitted, which they only managed on the second attempt. Docs have told us it is inoperable and any chemo offered would be palliative only. My Mum nursed her sister through cancer of the gall bladder/liver and having seen her very poorly on chemo has decided not to go ahead with it herself. She is in good spirits, not in much pain (controllable with just paracetamol), eating small amounts, the stent working fine so far. She was seriously jaundiced before this was done.
Just wanted to get a little advice on what we can expect on the journey ahead. Apart from her weight loss and general tiredness/lack of energy, it's sometimes hard to believe she has cancer. They have said she likely had months to live (not as much as a year) and this is the hardest thing to deal with - she keeps wondering, how long does she have? We have simply surrrounded her with love and are trying to make the most of each precious day with have left with her.

Re: Mum recently diagnosed

sam...welcome to our site; so sorry you had reasons to find us.  Based on your Mom's experience with her sister, she was able to make an educated decision in regards to further treatment.  Sam, although each person varies in regards to disease progression and symptoms, all in all, this disease is very similar to bile/liver cancer. 
Some options to consider discussing with the physician (if applicable)
Gastric bypass: If the tumor is blocking the flow of food from the stomach, the stomach may be sewn directly to the small intestine so the patient can continue to eat normally. 
Is your Mum fitted with a plastic or metal stent?  If the later, then you can expect little problems (if any) for quite some time however; plastic stents need to be replaced periodically; average life span of plastic varies from about 30 to 90 days.  Any spike in temperature needs to be reported to the physician immediately.
Enzymes such as Creon will aid in the digestion of foods and moving about also help with both, digestion and building stamina. 
Most of all enjoy your life with your Mum; she does not have an expiration date stamped on her feet.  She has a loving family and a great attitude and with palliative care your Mum may be feeling well for quite some time to come. 
Again, thanks for joining in.  We are glad that you have found us.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Mum recently diagnosed

Thanks for your kind words Marion. It's a metal stent so we will keep our fingers crossed it keeps working. The consultant said they sometimes get blocked and might need draining but all going well so far. She has taken the news of her illness so well, especially having seen her sister through to the end.

Re: Mum recently diagnosed

sam.....most likely you won't need to address any sludge build-up for quite some time and if so, then physicians either clean the stent or insert a plastic stent.  Your Mum knows more than many do by having first-hand experience with her sister's disease and you are supporting her decision and stand by her side.  That's what it is all about, dear Sam. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Mum recently diagnosed

Hello, Sam and welcome to our extraordinary family but sorry you had to join us.  I think your Mum is a very smart lady. I am 73 and would feel the same way after being my husbands caretaker. Like Marion said we don't have expiration dates. We try to stay realistically optimistic. When my husband had the choice for Palliative Chemo or hopefully more quality time he thought about it for 2 days and chose quality time and we never regretted it. Sam, life is funny. When I was younger I was scared of death and then as you start getting older your opinion changes, I just turned 73 and you began to accept life/death in a different way. You now experience death in a more comfortable way. My husband was 78 and his faith and love from the family seemed to give him his comfort. The most important thing is to keep any pain under control. Just want to suggest the only thing the ONC gave Teddy at that point was Vitamin B injections monthly that really helped with the fatigue. Wishing Mum and your family the best, enjoy and make new wonderful Memories. Please keep us update on how Mum i doing, we really care!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

6 (edited by shellina Mon, 29 Apr 2013 12:12:29)

Re: Mum recently diagnosed

Hello Sam,

My husband was diagnosed with intrahepatic cholangiocarcinoma in December 2012. He started having pruitis in September and his liver function test was out of whack. At first they thought it was his gall bladder and we kept getting sent around to doctors for surgery to remove the gall bladder. Needless to say, it was not the GB. He presented to the ER in early December due to jaundice. They put in a stent and a biliary drain bag and thankfully that has helped him tremendously. Just like your mum, it took two attempts to put in the stent. My husband is only 57. His tumor is inoperable. He was his father's caretaker about 12 years ago when his father was dying of pancreatic cancer. He saw what his dad went through with treatment and my husband also chose no treatment. He felt he would rather have quality of what is left rather than quantity. Right now it has been 7 months since he first started having symptoms and 4 months since diagnosis. Although we have hospice coming to the house once or twice a week, my husband still gets around okay. He has lost about 40 pounds but seems to be maintaining his weight right now. If it were not for the biliary drain bag, you would never know he was sick. Anyhow, we were told 6 to 12 months without treatment. We're already looking at 7 and we're still looking pretty good. I sincerely hope your mum does as well as my hubby has done without treatment. God bless you and your mum.

Shelley

Re: Mum recently diagnosed

Shelly, have you ever sought out a 2nd opinion? Many times 2nd opinions have totally turned the tables around. I am glad he is actually feeling well which after this many months is reason enough to get another opinion. Did the ONC offer any treatment? Your husband has much on his side.  His age, the fact he feels well. May I ask where his CC is located? Wishing you both well and please consider another opinion.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Mum recently diagnosed

Hi Sam37,

Welcome to the site although I am sure you would rather not need to be here. 

My sister recently died after her cancer being to advanced for surgery and chemotherapy and I am very happy for you to ask me anything.  My sister did have internal stenting, external drains, gastric bypass and a couple of other procedures in the 5 months she was ill.  I would echo what the others have said and that it can be hard to know time scales.  This forum proves that and although many can't be cured, they still have amazing stories of hope and positivity.

Clare

In the stars now . . . .

9 (edited by PCL1029 Mon, 29 Apr 2013 17:03:16)

Re: Mum recently diagnosed

Hi,

I have just one thing to add to the other voices.

There have been a lot of advancement in surgical approach as well as  interventional radiation treatment since the beginning of the last couple years .
Therefore I will suggest  a 2nd opinion by a liver surgeon,like Kato,Chapman,Brems  and those in Mayo,Sloan-Kettering, USC, UCSF,Emory in Atlanta,Princess Margaret Hospital at Toronto ; and Sze at Standford or any interventional radiologist at Northwestern University for radiation consult is appropriate; also  others well know university like Michigan,Pittsburgh,Duke ,Mass General and John Hopkins are good choice too to have a multidisciplinary  board  to review your case. I my self do not like to take chemotherapy , but there are a few that you can take by mouth and relatively produce minor side effects like fatigue or hand and foot symptoms which is easily manageable..But if the second opinions rule out all the above, and if you do not want to take the new type of targeted agents or chemotherapy agent like Xeloda,that will be fine.(remember, you are in charge, all you do is to check out whether you still have a chance to prolong your life without suffering the side effects of chemotherapy.)

The reason for a 2nd opinion is to know what are  the NEW choices  that are available  to you NOW  so you can choose to extend your life without committing  the mistake that you will regret it  later. Besides if you go for clinical trails like the one offered  by NIH for TIL (immunotherapy);you may be surprised by the result as one of our member had done so just once . this is a new era for cancer treatment and by no means is like the past decades .

I am not asking that you have to do what I suggest but if I do not let our members know about the alternative, I will be guilty for the rest of my life.
BTW,I am 64 and just like you, a patient of ICCA for 48 months; and  by no means have any medical knowledge and training like  your doctor had.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Mum recently diagnosed

Hi Sam,

Welcome to the site. Sorry that you had to find us all here and I am sorry also to hear about your mum. But I am glad that you've joined us all here as you are in the right place for support and help and you will get a load of each of these from everyone here.

I too am in the UK, in Dundee in Scotland and came to the site after my dad was diagnosed. His CC was like your mums also in that it was inoperable and he too had a metal stent inserted. That worked very well for his jaundice and lasted around a year or so before clogging became an issue. His pain was also managed well with paracetamol to start off with and then also with solpadols later on. Does your mum have access to a Macmillan nurse? My dad was asigned one after his diagnosis and to be honest, she was a major help in everything to do with us and my dads cancer. If your mum does not have one and wants one then her GP or consultant would be able to refer your mum to them.

I know that this is so hard for you to deal with and see and I was where you are now a few years ago with my dad. But you are not alone now in that we are all here for you as well and know what you are going through and how you are feeling. If we can help in any way at all then please just ask and we'll do our best to help. You are doing the right thing for your mum in being there with her and as you say surrounding her with love. Please keep coming back here and let us know how everything goes. We are here for you and we care.

My best wishes to you and your mum,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Mum recently diagnosed

Hello,

I was diagnosed in September with final diagnosis of inoperable extrahepatic cc. The originally tumor in the bile duct blocked the liver therefore I was hospitalized with jaundice. The tumor traveled throughout the liver and head of the pancreas. There was hopes of resection until they did a PET scan and found the entire liver and liver blood was cancerous. I was sent to oncology. The information I was given by oncology was single dose gemtacide (sp) possible but not advised. Due to my severe weight loss they felt it would do more harm than good. I have a very positive outlook and am determined to live life as full and happy as possible. I do most everything that I enjoy except work. My job is working with special needs children, it is physical as well I would be exposed to many viruses in a school setting. I am on Long term disability. I am on Hydromorphone for pain and it works very well. After taking some other meds for side affects of pain meds I finally take lactulose for constipation issues and that works great. I am mostly pain free, and have reasonable energy levels. I eat small meals throughout the day and am maintaining my weight now. I had lost 50+ pounds prior to diagnosis I  now weigh 77-81 pounds. She needs to keep eating that is the most important thing. I am 49 years old and have three boys ages 26,20 and 18. We live our lives as normal as possible. I have done and continue to do a lot of volunteering in my community. I was recently awarded "Maritimer of the week" on the news. You can find it online at atlantic ctv news.ca click the section "Maritimer of the week" that was a very special moment for me and was a complete surprise! I feel that I have very good quality of life. I feel better now than I did when I had my diagnosis. Since diagnosis I have traveled to Ontario twice from Nova Scotia to visit family. I have a lot of support from family and friends. My community is great! I look at this as an opportunity to do what needs to be done say what needs to be said and make sure that the people I love and care about have some good memories to have and share! I feel better now then I did when I was diagnosed with great pain management and a great attitude.

Re: Mum recently diagnosed

Thanks so much for all the supportive messages. We haven't yet got a Macmillan nurse assigned to us, but I'm sure we will in due course as I hear they are brilliant. The Hospice where she lives are also fantastic so I know we've got great people waiting in the wings to help when needed. I'll try to post when I can to let you lovely people know how she's getting on, but my good news this morning was she hasn't lost any weight in the last week!

Re: Mum recently diagnosed

Dear Sam,

I am truly sorry to hear about your mum.  Like yours, my mom has been diagnosed with CC in Feb 2013.  She is 72, inoperable, stage 4 but she has been on chemo theraphy (Gemzar) since late Feb.  The decision to start Chemo was not an easy one because my mom also thought about quality of her life vs. the other... She is doing her best but it has been very difficult and I find myself not to be able to cheer her on to continue something that is causing her so much discomfort.  It really is hearbreaking.  We are taking one day at a time and being grateful for what we have..  stay strong and be positive.  One thing for sure, it really is a battle fighting cancer. 
Wishing you best for your mum, you and your family...

Hugs,

Jeeyoung

Re: Mum recently diagnosed

Dear Sam,

I just wanted to welcome you to this site and say that I am sorry to hear about your mom. I can't really offer any advice other than to enjoy every moment with your mom and make sure she is always comfortable and pain free. A positve attitude really helps as well. Take care of yourself so that you can take care of your mom. Bless you and your mom.

Love and hugs,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.