Topic: New Member - Dad not getting any treatment

Hello All,
I have been reading through the posts now for a few weeks, trying to piece together as much information as I can. This site is amazing, and it is wonderful to see such caring people sharing support with each other. I am truly sorry for all you have experienced.

   My father was diagnosed on February 1st of this year. He initially presented with acute jaundice and itching. After diagnosis, he chose not to pursue any treatments, but he did receive a plastic stent via ECRP, in March. That alleviated the itching and jaundice. Two-three weeks ago he started presenting with jaundice again, but this time no itching. I told him he needs to get his stent replaced, but he is not interested. I spoke with his doctor, and they said they could call in antibiotics if we wanted, but he would need to go in for a blood test first. He does not care to do that either. His jaundice is worse this time than last, but again, no itching.
    The fatigue has really gotten to him this time. It is sad to watch, and feel helpless. He says he is not ready to let hospice come in either, and has asked us to respect his decisions. While trying to do that, it is hard not knowing what we need to look out for, or do to make things easier. Overall, Dad is staying in good spirits, although yesterday he was noticably more withdrawn. Any advice, good or bad, is welcome. Hoping he lets hospice in soon, that will take some of the burden off of us, not knowing how to help. Thank you in advance.....you all have already helped tremendously!

Re: New Member - Dad not getting any treatment

hi there and welcome

i'm just curios why he's choosing not do have anything done?

and its obviously HIS decision....but curious as to his reasons.

Re: New Member - Dad not getting any treatment

Dear Turtlekid, welcome to our remarkable family but sorry you had to join us. I believe there comes a time when we as children have to do a reversal with our parents, been there, done that. At first it is hard but sometimes you just need to give some tough love. Please sit down with Dad and spell it out to him, like issuing a little jolt. If he does not get treatment or Hospice if the ONC orders it, he will not have a pleasant ending when ever that time is! He probably needs a stent exchange as plastic stents are changed like every 6 weeks to 3 months. What is his diagnosis and does he see his ONC regularly. This is not a disease where you can do nothing, its not going to work. It also makes it very hard to help him with suggestions when he turns everything down. We have had others in his position and after the family had a talk everything changed. I know it's hard, Be Strong!

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: New Member - Dad not getting any treatment

Hi All,

Dad was given a prognosis of 4-7 months without treatment, and only 12-16 (ish) with treatment. He is 80 years young, and that was likely part of his decision as well. He has never been to the hospital, and had only had to go to the doctor for preventative meds in the past. He is just not a fan at all. My family and I have tried talking to him on several occassions, he just isn't receptive (yet). We will for sure keep trying. He says he is in no pain. The doctor ordered hospice right away, but he has refused to allow them in thus far. He is not being seen by any doctor at this point, but we have called in to his primary care doctor a few times, and he has sent in prescriptions for anti nausea and prevacid for him. That was when he was having the terrible feeling of fullness to the point of discomfort. He said the medicine helped. I just wonder if anyone has ever NOT replaced a plastic stent before. I know that it seems odd, and I don't want to say Dad has given up, but he is tired. Thank you so much for your replies!!!!!!!

Re: New Member - Dad not getting any treatment

Dear Turtle kid, Oh my. I have NEVER heard of anyone not getting a stent replacement. If this is what he chooses, he at least could be helped with having comfort. Hospice will not do anything to him except to see he gets the proper meds. When my husband had Hospice in the home they sent out a Hopital bed which he found so much more comfortable than his bed. I set it up in the living room where it was so bright and airy and the big TV. Family and guests were very comfortable in that setting. Can you make a deal with him? Other than a stent exchange (for his own good, believe me) for which they give him twilight sleep and Hospice just to check on him and adjust Meds, you will leave him alone. Think he might go for that? I am wondering is he scared of what they may do or do you think he is just ready to give up? Comfort is our bottom line.

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: New Member - Dad not getting any treatment

I wish I knew what he was thinking-but I am also trying to be very sensitive to his wishes/needs. He keeps telling me that he is in no pain, but I just cannot imagine that will last. I wonder what kind of infection not getting the stent replaced will cause, and how to know what to look for (outside of a fever, which he has been running low grade off and on). His BP is much lower now, but other than the fatigue and jaundice getting worse, nothing much else noticeable. Just probably being over protective....but not sure that is possible. He does not remember what the oncologist told him as far as timeframes-nor does he want to know. He has always been a bit stubborn-guess he will go out the same way. His nature has carried him far in life, he is truly an amazing man! Thank you all again for posting-any info makes me feel stronger!

Re: New Member - Dad not getting any treatment

Hi,
please check the link below.

http://jaundicecure.hpage.co.in/obstruc … 90400.html

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: New Member - Dad not getting any treatment

Dear turtle kid,

Welcome to this site, but sorry you had to find us. I feel bad for you because you want to help your Dad so much but he wants to do things his way. I hope he comes around for his sake as well as yours. There are things that can make him feel better and keep him from being in pain. Much luck and prayers for your Dad.

-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: New Member - Dad not getting any treatment

We are going to have the hospice talk with him again today. His energy is depleting so quickly now. I hope that he will choose to either have the stent replaced, or at the very least let hospice in. It is such an emotional struggle that I believe that having someone else come in will make it easier on us, and truly him in the long run. I guess without treatment, we can expect the timeline the doctors gave us to be pretty reliable? Seems like he was doing great, and now deteriorating quickly. I am just not sure if that is the CC or the jaundice/bile. Thanks again to everyone, prayers for all suffering, and prayers of thanks to those of you who reach out to others. truly a blessing!

Re: New Member - Dad not getting any treatment

Dear turtle kid, I wouldn't be surprise if all the things you mentioned are bringing Dad down. I think he made up his mind when he heard the prognosis. I think when Hosipce comes in they may win him over, he really does need them if for nothing else for pain control. When my husband was told the CC  returned for the 3rd time, and he was 78, he asked the ONC what he would do and the ONC told him, "I would not put my father through anymore". That really helped him make his decision for no Palliative Chemo. The ONC said 5 -6 more months and he was absolutely right on. But noone really knows, we don't have expiration dates. Good luck with Hospice and please let us know. They will interview you and him and ask you what all you would like them to bring in. If I may suggest a hospital bed, they are more comfortable and have the side rails. If you can put it in the living room he won't feel he has been put away somewhere. I had them bring a walker and later a wheelchair. He also had a commode but never used it. Having Hospice will free you up to a point where you are not so frazzeled and you can spend more quality time with him.

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: New Member - Dad not getting any treatment

Hi turtle kid,

I am very sorry that you have had to find this board but there is so much support here not only for your dad but for you too.

I understand how hard it can be to watch him deteriorate so rapidly and although there may be no treatment that he will allow, there is still much that can be done to make the time he has as comfortable and tolerable as possible for him.  Don't underestimate the support that hospice or other health care providers can give you as family members - it is as important as the care your dad gets. 

My sister had CC and rapidly went downhill - quicker than anyone predicted.  I'm not saying it will be the same for your dad but we had as much support in place as we could get for my sister.  She was at home for her last month and would not allow Macmillan nurses to be involved (Macmillan are specialist cancer nurses in the UK).  There was no hospice where she lived either.  My sister allowed her GP and the district nurses to visit her but that was it.  We worked with what we had and the district nursing team had the same nurse that my sister like visit her (apart from her days off) and Macmillan were advising the district nurse behind the scenes and were willing to step in at any point that my sister allowed (she never did).  The fact that her GP and district nurse had a relationship with my sister and the rest of the family meant that when we needed it, we could ramp up at very short notice things like pain relief, anti-sickness and beds, commodes, high seats - you name it if we asked they tried to get it for her. 

I ended up having a  fantastic raport with her GP who would ring me (I live 300miles away) to keep me in the loop and to discuss her care (I had been managing the medical side of things for her husband as I am a nurse).  On a couple of occasions when it was all too much for me, her GP would pick up the baton for me as there were times when I felt out of my depth and not coping with decisions that had to be made.

If your dad will let hospice in, even in a small way, it might just make the world of difference in terms of support for you all.

Clare

In the stars now . . . .

Re: New Member - Dad not getting any treatment

Thank you Lainy and Clarem - your words bring a lot of comfort. Dad was not receptive to the discussions today, but tomorrow is another day, blessed that we have it, and we will try again. Although I am too old for it, I may have to play the "baby" card with him soon!! I really appreciate your inputs, thank you! I will keep you updated on how we do. Thank you thank you thank you!!!! smile

Re: New Member - Dad not getting any treatment

Hi,

Please tell your father he will feel much better after having a stent replacement. The procedure takes no time at all and will alleviate the jaundice and the tired symptoms. I have had a plastic stent and when it was decided that I was inoperable they replaced it with a metal stent. The plastic stents get clogged at last 3 months at the most. I was diagnosed in November and can truly say I feel better now then I did then. My cancer is in the bile duct  and has spread throughout the liver and the pancreas. I feel that he and I have very close type as I don't have a chemo/ radiation option and am inoperable but I am still here. My first diagnosis came in September when I was hospitalized with jaundice. I know it is hard but I feel that this is a very hard disease on the family and I am doing whatever I can to make it easier for them. It is important to have good quality of life for however long we are here! I am 49 years old with 3 grown children and a wonderful husband. It doesn't matter how old you are his family loves him and don't want to see him in pain!! Please tell him you want to spend time with him and make some memories! It may seem mean but lay the guilt on him!! I would love to talk to him if he would talk to me?

Re: New Member - Dad not getting any treatment

Hi,
I totally respect your dad's decision not to accept treatment. If I can be honest, in my mom's case, the treatments that she received (chemo/radiation/stents) caused more problems, hospitalizations and suffering that I feel she could have avoided if she did not receive treatments.  Although reality is that if one does not receive treatment, the cancer may progress faster, but at least I feel my mom's quality of life would have been better.  She was completely asymptomatic when she was diagnosed.  Actually she was diagnosed by accident. She was eating well, active and feeling fine.  She did started having complications once chemo/radiation started.  At the time that your physician tells you that you have cancer, you are in a daze, in denial.  Then you get to the stage where you want to try anything that may help. But in my mom's case, those treatments made her feel so ill, so many complications.  Each treatment she received, cause a complication. She could not get a break.  We were actually told that after her chemo and radiation, the PET scan came back clean, but then ONE MONTH later, she became jaundice, then all hell broke loose. 
So, respect your father's choice, I now realize that QUALITY OF LIFE IS FAR MORE IMPORTANT THAN QUANTITY OF LIFE.  We learned it the hard way.

Anna