Topic: No Treatment?

My father was dignosed with cholangiocarcinoma or pacreatic cancer.....they don't know which one as they say they can't see the pancreas that well on the images but they do know there is a tumor in the bile duct. He was jaundiced and had an ERCP with stent placement. The jaundice and itching went away but a week later he had a blockage in the intestine. He has recovered from that and they let him out of the hospital but less than a week later he has congestive heart failure and they say that the EKG shows a little heart damage since the last one. He is a type 2 diabetic, had heart valve replacement in 2002 with double bypass, has very weak kidneys and other little things that go on with him. He is 77 years old and active until a few weeks ago when they told him about cancer. They say  his kidneys cannot tolerate chemo as it would take more than two weeks to expel it and it would cause more damage than it would help. No surgery because it has spread to the bone already. No biopsy can be done either so we don't know what kind or anything they just did the CA19-9 blood test and it was 590,000. I don't know what to do. Do we get a second opinion or is his health just too bad for any treatment. I haven't read on here yet of anyone that could not at least have chemo.......They have given him 6 months or less but he would rather them do SOMETHING rather than just let him lay there and die. Anyone have anyone else that has been told the same thing??? I am trying to hang on but feel helpless.....Thanks, Rita

Re: No Treatment?

Dear Rita.... It is difficult for anyone to tell you what direction to go.  Have you gotten a second opinion?  Maybe that would make your decision making a little easier. Considering your father's age and medical conditions especially the weak kidneys and congestive heart condition, trying chemo probally would be highly  risky.  My Dad had and died from congestive heart failure.  His arteries were so bad they would not even attempt by-pass surgery.  I guess my point is chemo is very harsh and eat away at cells and connective tissuse and interefere with normal functioning of many organs and the doctors are most likely concerned  with organ failure and /or internal bleeding.  I am so sorry your Dad has been struck with this disease and unfortunately I can't think of anything that would be of help to him.  If everything is as you say it is, I would cherish every moment and provide your father with all the love and support you can muster.  Rita I'm only 51 with I guess healthy kidneys and a heart that beats irregular because of the chemo.  Surgery is no option for me either due to mets to the bones.  I am still trying some chemo and radiation but the doctors are considering it as pallative treatment to try to extend my life.  I'm not lost, I understand the reality but also understand that miracles happen every day. So I will end by saying there is always hope, but  it's your Father's choice as far as getting a second opinion and treatments if the doctors are willing to do it. If they strongly feel it will shorten his life or cause greater problems they may not be willing to do.  I hope I wasn't to awfully blunt but I tell it like it is.  Cancer is a cruel disease.  A prayer of support is coming your way.
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: No Treatment?

Thank you so much for the reply, Jeff. I am so sorry about your situation and I will be praying for you too. I am appreciative for the bluntness. Like my dad says "I don't want any beating around the bush." His doctors are wonderful and have taken very good care of him for a long time before this diagnosis so they kind of tell it like it is and that is good at this point for sure. We did find out today that they are going to hopefully try a needle biopsy on the spot on his hip to at least get a tissue diagnosis to maybe do radiation on that spot because it is so bad that it could fracture at any time. The wierd thing about all of this is that it was not there 2 months ago. I understand about not being able to do chemo and surgery, but he  doesn't want to just lay there because he doesn't want to be a burden on any of us. We just reassure him that we want to be here to help him any way we can. He is just a very proud man and it is hard for him. He is not the kind to show emotion but he is changing before my eyes. They asked today if his heart stopped, what did he want them to do? He has a living will so that took care of that but boy was that scary to think about. Well, take care of yourself and I will be praying for you. Thank you!!!!

Re: No Treatment?

While this does not make the here and now any easier - know that you will make the right decision at the time it needs to be made. You will know what is right for your dad and your family.

As far as treatment for your dad goes, I encourage you to understand that Chemo is brutal on the healtiest of people and within days of beginning treatment your dad's qaulity of like will drastically change. If dad is concerned that he is doing nothing - assure him that he is in being able to continue to share his life with his family. 

Bz

Re: No Treatment?

Hi Bazel,
Thank you for the reply. That is a good idea about telling him that he is able to spend the rest of his time with us and I know that his quality of life will be better without chemo so I just need to convey that to him. I think he has come around some today and he is realizing that there is nothing they can do. I am staying at the hospital with him at night now to make him feel more secure. Hopefully, he will be able to get out soon and come home with hospice and be with his dog that he loves so much. We are staying at his house to be with him also. This is going to be a very trying time for all of us and we will not forget about all the other people in this world that are going through the same terrible thing. God bless you all.
Rita

Re: No Treatment?

My husband Bob is 76 years of age. 14 months ago he was diagnosed with inconclusive bile duct cancer.  Inconclusive because they were not able to do a biopsy. However all the signs pointed to BDC. He is not a candidate for surgery because of his age, plus he is diabetic and also has congestive heart failure. His heart operates at 30%.  Two years ago he had a five vessel heart bypass.  Then Sept. 2006 the bile duct report with a prognosis of 3-6 months.  Depending on the Dr. the prognosis could be anything from 3-18 months. We went to the Mayo in AZ where they placed metal stents.  Prior to the metal stents he had plastic stents.  He had so many infections and was in and out of the hospital, twice suffering from septic shock and liver abcess. In Oct 2007 the metal stents became blocked and the Dr. used a balloon to dilate and enable the stents to become unclogged. One month later, (Nov.) he started vomiting.  The Dr. did an ERCP and discovered his stomach was blocked.  The bile duct tumor has spread to the stomach.  He spent 10 days in the hospital while they drained his stomach of backed up food that had no exit. That took six days during which time he was not allowed any food or liquids. He could have ice chips. They did a bypass from the small intestine to the stomach. So now he has the bile duct draining into the stomach and the stomach draining into the intestine. So far he has received no chemo or radiation on the bile duct tumor.They told us it was pointless since stats show it is not successful.  However, now with the stomach invaded we are told chemo and/or radiation can be available.  We are scheduled for a consultation this coming Monday, Dec. 3. I am wondering if he has the strength to do this.  He lost about 25 lbs in the hospital.  He is very tired and said he feels so weak.  The surgical abdominal incision has not healed yet and I have to clean and pack it with gauze every day. Would chemo be started under these circumstances?  Yesterday was one of his awful days.  Neither ate or drank anything and stayed in bed.  Today is much better and he has been able to eat some small portions.  My husband is a very private person and keeps a lot to himself, so he doesn't discuss all of this only to let me know he feels terrible.  I wish he would talk to me.  I can only imagine how awful it must be for him to keep all his emotions inside.  So far he has beat the 3 month prognosis but I am worried about the chemo.  His Dr. told him the chemo would be the kind that does not cause nausea or hair loss.  I guess I thought all chemo and radiation caused all kinds of miserable side effects.  We will know more on Monday.  Thank you for letting me ramble.  God bless each and every one of you.  I am so glad I happened to find this site.
Irene.

Re: No Treatment?

Dear fathersdaughter,
I feel so bad for you and your father and your family. As Jeff said, sometimes chemo can just make quality of life worse and you definitely don't want that. A second opinion is always a good idea, but not if you have to drag him around to doctors and make him feel miserable. Cherish each moment with him - I'm sure you already are doing that! It would be great if he could get home with hospice care, be with his beloved dog and beloved family. You sound like you're doing everything right - your love and support is the best medicine. You're a wondeful daughter for being there for him.
Much luck and love to you,
Joyce

Re: No Treatment?

Dear Irene,
Your message may get lost here where it's posted, you may want to copy and paste it into "introductions" so more people can see it and respond.

I'm so sorry  you and your husband are going through this terrible ordeal. It's wonderful that he's managed to beat the odds so far with all of his other medical problems. I'm very confused as to why they would want to start chemo now that everything has spread more - I would think chemo would be out of the question at this point, but hopefully you'll find out more from the doctor. Chemo can be very debilitating so I'd ask what drugs they were planning on giving him - gemcitabine and Xeloda are the usual ones for cc, and they're milder than most and don't always cause hair loss, but they do usually cause nausea. It's a tough decision and whatever you choose is right, but if the doctors don't think he has much time, you may want to consider that chemo may worsen his quality of time he has left. It's all up to the individual and some people tolerate it well, but my mother was too far along when she tried chemo and it really knocked her out and lowered her immune system.

Get all the answers you can possibly get from the oncologist and post back here so some of the knowledgeable people can give you their perspective. Unfortunately, there are so many perspectives that it may be confusing. You just have to follow your husband's wishes and make him feel supported in whatever he chooses. I know what it's like to have to care for someone who keeps it all inside, and it's heartbreaking. The poor man must be feeling so much anguish that he can't share. Can he talk to a clergy member or hospice worker, maybe? Sometimes it's easier to open up to a stranger - he probably doesn' t want to burden you with his worries because he loves you so much.

Much luck on your doctor's appointment - I hope you both find some comfort and answers here-
Joyce

Re: No Treatment?

Hi Irene,
That is wonderful news that your husband has surpassed his prognosis. Your husband sounds just like my father when you talk about him being a very private person. My dad is the same and is very ornery and I was pregnant when he had his valve replacement and his bypass and I had to travel about 45 miles round trip every day to make sure he was o.k. and visit at the hospital and then at rehab. When he got out I did the same to visit and get him to Dr. appts.  He had an appt. one day at 9:00 a.m. and I got to his house about 20 min. till because he lives 3 min. from the office and he jumped on me about he was gonna be late and everything. For the first time in my life I felt that I disrespected him but I had to jump back on him because I felt I was doing all I could and I didn't deserve for him to make me feel that I was not doing just as he felt I should. I was crying still at the Dr. office and he appoligized and never has he said a cross word to me again. I love my dad but I have never heard those words out of his mouth. I just told him when he was diagnosed. My 4 year old daughter told him she loved him when we were leaving the hospital a couple weeks ago and he said" I love you too......go take care of my dog."  I about fell on the floor. He is being humbled by this disease as we all are and I am gonna miss him when he is gone!!!! I will update and you do the same. Let's all hang in there.
Rita

Re: No Treatment?

Dear Joyce,
Thank you for those wonderful words. I know I will have no regrets but I am not sure about my brothers.
Rita

Re: No Treatment?

My dad is still in the hospital. The congestive heart failure is better but he is in heart failure so his heart is just slowly giving out. His blood sugar has bottomed out a couple times. His sister came in from Dallas to see him for a few days.(We live in Long Beach, Mississippi) On Saturday morning when we walked in his room, I smiled and said "Hey" and he looked at me and said " Yeah, I want to know what is going on." I didn't know what he meant so I asked and he wanted to know why he was there, how he got there,who brought him there and what was wrong with him. He didn't know anything! Inside, I was FREAKING out but I calmly answered his questions and then told him I was going to find the nurse. My aunt stayed with him. The night nurse said she got the impression that he was like that when he came into the hospital so she did not know that it was new. We figured out that his blood sugar had dropped and they had given him darvocet for the first ime so we thought it was a combination of that because slowly he came back to normal. It took a few hours. They changed his pain med to dilauded and I stayed with him that night to make sure it didn't happen again. He was fine. It happened yesterday morning again after his sugar dropped too low so I guess it is just a side effect of low blood sugar. The Dr. says that every time your sugar drops too low it kills brain cells. They did a needle biopsy on his hip in Tuesday and Yesterday they said it was adenocarcinoma in his hip but still dont know the primary site.(pancreatic or bile duct) He has an appt. with the radiology oncologist today to discuss maybe doing palliative radiation on that hip to stop the terrible damage it has done. It is at the breaking point. My dad is hoping to just not wake up. He told my brother that he wished it was over. It has only been 3 weeks since we learned of this. He cannot eat anymore. He drank a little soup yesterday and drank enough glucerna to take his meds. and the day before that he had nothing to eat and hardly drank a drop. He spiked a fever last night and I looked at his urine bag to his output and it was so cloudy and dark and looked like blood was in it. Of course, I freaked out and the nurse didn't even know it was like that when I got her in there. They sent a sample to the lab so I am waiting to find out what is wrong. This sucks sooooooo bad. I am 39 years old and don't want to lose my dad yet, but I just have a feeling he will not be here very much longer. My heart goes out to all of you as well.
Rita

Re: No Treatment?

Hi Rita,
I know how frustrated and powerless you must feel - especially since they can't even give you an exact diagnosis. And he has so many other health issues, it must be so scary for you. The only little bit of info I have for you is that the urine is usually very dark/brown/tea colored with cc - my mother's was like that for the last 2 months of her life, very shocking to see but it's just the bile getting re-routed to the urine when the liver isn't functioning properly (I think that's the medical explanation).

I hope you can keep his pain and his blood sugar under control - if he's not eating, you may just have to let him be, try to give him liquids frequently, but he may not be eating because of depression, too, so maybe he could see a clergy member or psychologist at the hospital? He sounds like the type that wouldn't go for that stuff, but I thought I'd suggest it just in case.

Truly, your being there for him is the greatest gift you're giving him. He appreciates it, whether he tells you or not.

Best of luck and hope,
Joyce

Re: No Treatment?

Thanks Joyce!!! He did tell the radiology oncologist today that he was probably depressed because of everything that we have learned in the past few weeks. He did eat almost all of a muffin this morning along with a few bites of cereal that he let me feed him and drank some apple juice so that was very good. He has tremors also that interferes with his hand mobility to get a fork or spoon to his mouth without everything spilling. This has been going on for a long time so it is nothing new but it seems to be getting worse. They are going to start radiation treatments on Monday on his hip. His bilirubin is climbing so they are consulting with the G.I. doctor again. They also feel that the tumor in the hip is interefering with the bone marrow. They put him on the duragesic patch yesterday and that has helped with pain but his blood pressure is dropping each time they take it. Before I left the hospital tonight it was 82/52. Don't know what all of this  means!!!! It seems if one day is pretty good the next is pretty bad so I am not looking forward to tomorrow but I am trying to keep my hopes up.
Rita

Re: No Treatment?

Thank you Joyce and Rita. We talked to the Oncologist. He told us that my husband is much to weak to receive Chemo right now. He needs to build up his strength. Reason for starting chemo now when they didn't at first diagnosis is since the tumor has spread they need to stop the growth from invading the liver. However, he is struggling to get over the latest surgery. Very weak, no appetite, lots of pain.  He ate a small portion of supper last night,  but in the night he threw it up. Now I am wondering if the surgery was successful. The surgery was to create an alternative opening for the food to be extracted from the stomach. Before he had the surgery and was vomiting every meal we were told that was because the food had no where to drain.  I'll keep you in my prayers.

Re: No Treatment?

Irene,
You and your husband are in my prayers also!! I hope and pray everything gets better with your husband and make sure you take care of yourself too.
Rita