Topic: Cholangiocarcinoma

My husband was diagnosed in November. it was found during what they thought was a simple gallbladder surgery and was mistaken for gallstones.
Since then he has been through ercp , lap. and on Nov 19 the Whipple procedure. Ct's and pet scans did not reveal the actual size of the tumor and during the surgery they found more than expected . Original prognosis was for curative but since then has changed. 10 Lymph nodes were removed 8 were positive. MY husband has had 3 strokes, 1 heart attack, diabetes and dementia. Open heart surgery to replace a aortic valve was done in may of 2012. Because of his physical and mental condition, chemo was out of the question according to the oncologist. They cannot seem to give me an answer as to his current prognosis so they will be doing another CT scan labs this month. I am his main caregiver and I work a full time job. We were blindsided
by this and it has really affected me more than some know. I just want answers that for some reason none can give .

Re: Cholangiocarcinoma

Oh, Dianna, I am so very sorry for you both! You certainly have gone through way more than the usual! Wish I could give you some answers you are looking for but you will probably get them after these tests coming up. I am sure the ONC wants to make sure before he proceeds with answers. Do you have any help from family or friends? You might want to get them involved. I found that the more I talked about what we were going through the better it was. Then when I would get tired I just sent a blanket email to all at night. My husband also had a Whipple and it takes months to recover as it is a huge surgery. May I ask where your husband is being treated? Please keep us posted when you can and you will also find it very cathartic to come here often!

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: Cholangiocarcinoma

St Vincent in Indianapolis IN

Re: Cholangiocarcinoma

Diana,

You will need outside help in order to keep your health, job and sanity. I hired a companion and often extra caregivers to supervise my Dad in addition to moving him to assisted living near me. It is expensive though..sometimes my sisters would come from out of town to relieve me when I went on vacation.  He had long term care insurance which covered a majority of the assisted living. This wasn't a nursing home so nursing home or in home nurse may be more appropriate. Also, consider hospice. When we finally signed up for hospice I was really worn down form frequent trips to the ER which were painful and scary for my Dad (who had dementia too). In CA, if prognosis is approx 6 months or less, you can qualify. People often wait too long to take advantage if the wonderful support hospice can provide. If he gets better, you can simply "graduate out of hospice". It made a world of difference as they brought everything to him, including ordering his meds and handling every little medical crisis. Medicare covered all expenses, down to the depends and meds and medical equipment which was a huge help. I was happy to learn that they they do allow some curative treatments such as antibiotics for infection (oral and topical, not IV) in addition to other symptom management. They do not provide simple supervision though, and it sounds like your husband will need that 24/7. Even with my father in a dementia unit in assisted living and having hospice care and a helper companion, it was pretty intense (I have kids and a pt job too). It was also an honor, I must add.  Decisions for the care of your dear husband is so personal so I don't presume to know what is best in your situation, but I just wanted to share how I literally used a village to give Dad the most care and love during this stage of his life. And I managed to keep my sanity most of the time. With help, I was able to spend more time simply enjoying his company and loving him.

Willow

Re: Cholangiocarcinoma

Thanks, Dianna. You want to make sure that any Hospital or ONC that hubby is seeing has a lot of experience in treating CC, that is extremely important because of it's rarity! Your thoughts of going to Chicago may be very valid. Not trying to scare you just want you to have best/more options.

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: Cholangiocarcinoma

Dear Diana,

Welcome, but sorry you had to come here.  You have already been through so much, but know that you have come to the right place as we have all been there and truly understand what you are feeling. 

It sounds like you are dealing with a lot of other issues with your husband besides the CC.  Hopefully you will get some answers soon and be able to go from there.  Second, third and even more opinions are a good thing.  Also finding a doctor who is familiar with and has dealt with this type of cancer.

The help and support on this site is phenomenal.  Come back often and let us know how things are progressing.

Take care.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Cholangiocarcinoma

Dear Dianna,

I want to welcome you to this site and let you know we are all here for you. You are in a very tough place right now and at times I'm sure you feel like you cannot cope with it all. Please come here for comfort and support when you need it.

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.

Re: Cholangiocarcinoma

Dianna,

While I don't have anything new to add to what has been said, I wanted to welcome you to the board.  LIke others have said, come here often and ask for what you need.  People here have had similar experiences to what you describe.

Take care,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Cholangiocarcinoma

Dianna....quite frankly, I don't know how you have been doing it all along; major caretaker for your husband, working fulltime and addressing your husband's numerous health issues like diabetes, strokes, dementia and open heart surgery.  Added to this comes the diagnoses of Cholangiocarcinoma, recuperation from a major surgery (Whipple) and now the uncertainty of a  prognosis.
It is likely for the scan not to reveal anything worrisome and that regular scans will be ordered for follow-up.  With this disease we have learned to gauge everything in small increments; tomorrow, next week, next month and so on.  I hope for you to stay with us, dear Dianna.  We are here to support you.
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: Cholangiocarcinoma

Dianna -
Welcome the roller coaster ride of cc. The nice thing about joining us here is the wonderful support that you will get. As a nurse I have always advocated support groups for anyone going through any kind of healthcare crisis and this is a great group to get support from. No matter your question some one has been there before you and has wisdom to share.
I would back up everything that has been said. I will add however that if your husband is eligible for Medicare then he has a hospice benefit that would do as has been previously mentioned.....even if you have a Medicare HMO or Medicare Advantage plan, Medicare will resume payment if you opt for hospice. The other thing that you are eligible for is Home Health support again even with Medicare HMO or Advantage plan, they offer some sort of Home Health. This is skilled care at home - things such as a nurse coming in once or twice a week to help with symptom management and may other things, therapies in the home, a bath aide to assist with bathing and a social worker to assist with things such as placement if needed, obtaining in home care, etc. They will not provide ongoing custodial care such as daily care but can be a GREAT support system. Even being a Home Health nurse myself I wish I had asked for more help when my husband was discharged after his surgery. Just ask you doctor. I am sure you have help close by.
Keep us posted and we will be here for you.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Cholangiocarcinoma

Kris...we are trying hard to organize the discussion board. Your posting provides great information for those looking for additional support i.e. nursing care and I am concerned that it may get lost in the threads.  Please don't mind us moving your posting to Supportive, Palliative & Hospice Care.
Thanks much,
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: Cholangiocarcinoma

Not a problem Marion. I really truly believe that use of Home Health (skilled care not custodial Home Care) is a VERY under utilized benefit in our country for sure. I have been in Home Health and at times Hospice for over 15 years and too many times we don't get called in until there is little we can do or everyone is so overwhelmed and in crisis. People need to know to ask for it. And anyone of Medicare age or has Medicare for disability are eligible for it whether they maintain straight Medicare or pick up an HMO/Advantage plan. Most private insurance will cover both.

Sorry, it can kind of be my soap box.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Cholangiocarcinoma

Ha, ha Kris...love you on the soap box.
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: Cholangiocarcinoma

I didn't realize that Medicare might pay for this when I was hiring home health aids (cna's) through a private agency and paying for it with his long term care insurance. This was for my dad before we moved him to an assisted living facility. Maybe he didn't qualify fir coverage at the time because he didn't really need skilled nursing till the very end when medical issues were combined with dementia. For a long time he just needed supervision and help with activities of daily living. In the other hand, later..insurance did help When he had an infection like cellulitis. After taking him to the Dr, for diagnosis, home health was ordered. A home health nurse came to assess the healing and change dressings. Later, when he had a suprapubic catheter, they came to check that too, but it wasn't daily and the visits were brief and focused just on the task at hand, not overall care. Still, it was a a godsend compared to dragging him out to the Dr office for follow ups.

Willow

Re: Cholangiocarcinoma

Willow -
Medicare doesn't pay for the Home Care/custodial care which is the everyday stuff that people need....ie bathing, dressing, helping with meals and cleaning. Often times that is mostly what people need BUT Medicare pays for skilled care and in my opinion anyone with a disease like cancer, new diabetes, Heart failure needs to have a referral. Also anyone who recently had surgery (Major or minor) or anyone who has been see in the ER or hospitalized. A home health referral can help with medication management, symptom management, wound care, catheter care, drain care and without a doubt will help prevent hospitalization. They also supply physical, occupational and speech therapy as needed. Then as long as someone else like the nurse or therapist is in they will supply a bath aid a couple times a week and a social worker.
Medicare requires you to be homebound (not that you can't leave the home but it is a taxing and difficult effort), have a skilled need (wound care, medication teaching, symptom management teaching and you have to have a doctor.

Okay....off on the soap box again but I do believe that so many more could benefit from it.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Cholangiocarcinoma

Kris V.
I couldn't have said it better myself. I also am a home care nurse and agree that home care services are not utilized enough. I think if doctors were better educated on the variety of services available for patients at home after discharge from hospitals, it would help patients and families...

Also, if anyone is a veteran, I do believe the that government will pay for private duty assistance in the home that medicare  and private insurances do not cover.

Also, speak to a social worker at the hospital or if you already have home care services at home, most home care agencies have social workers available, they may be able to assist you finding  volunteer organizations may offer respite care.

Anna

Re: Cholangiocarcinoma

Bless you, both! Kris.. Never feel you're on a soap box. This is valuable and desperately needed info that will help many. Its a gift, not a lecture. Thank you!

Willow

Re: Cholangiocarcinoma

Hello everyone, checking in, hubby has had his CT scan, blood work tomorrow , then consult on Friday. He seems to sleep a lot in the last few days
and talks of being so tired. His blood sugars have been really strange for a while now. I haven't changed his diet nor the way I prepare his food. They are really dropping into the low ranges so I have been holding the insulin back. I've never encountered this before. Strange how some concentrate solely on the diabetes and suggest putting him on a strict( hold the white diet) . They don't realize this drop in blood sugars is connected to the CC. They freak out because I let him lick the peanut butter fudge spoon telling me that I am being irresponsible in my care for him. How much time he has I do not know but I sure am not going to let him be miserable while he is still here. I still am caring for him as best I can but a little pleasure now and then never hurts. Hoping to finally get some info Friday from ONC.

Re: Cholangiocarcinoma

Diana, 

I know you are dealing with multiple issues here, but sometimes you have to do what you feel comfortable with.  At one point when my husband wasn't able to eat much I was told to let him have anything that he asked for and could keep down.   So please don't let anyone guilt you for allowing him this small, simple pleasure.  smile 

I think we all felt blindsided in the beginning and because this disease is still considered rare, complex and presents itself differently in each case, it is hard to diagnosis and figure out what direction to go.  I too am hoping you will get some answers on Friday.   

Keep in touch and let us know how things are going and what you learn on Friday.

Take care.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Cholangiocarcinoma

I am with you on the peanut butte fudge spoon.  Your husband deserves a treat and if that is what it takes then more power to you.
Please share with us Friday's test results.
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: Cholangiocarcinoma

Is there anything that can prepare me for what is to come ? What are some effects that I should be watching for. I know fatigue and no energy and appetite change are to be expected but what will come next. There seems to be no answers. I've heard it is aggressive and move forward quickly, not to mention the pain some experience. I'm trying to plan ahead for his care but I am in the dark on some things.

Re: Cholangiocarcinoma

Diana.... things may progress differently from those not confronted with the other, complicated health issues your husband is experiencing.  In regards to CC, I would make sure to take his temperature (daily) and to watch for vomiting and dehydration.
Others may chime in and share their thoughts with you as well.
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