Topic: another update...

My father took a major turn for the worse this past Monday. He passed out several times. His blood pressure was so low that at times we could not get a reading. Usually, he will pick back up in a day or 2, but this time he hasn't. He can't keep any solids down and over the past 2 days, cannot keep in any liquids either. He is not bed ridden, but can barely walk now. Things changed almost overnight. It has been so strange. He has had so many "close calls" that it doesn't seem real that this is it. I don't know if hospice will put an IV in or not since he cannot hold liquids. I've been told that their rules have recently changed and that they can, but is that just going to prolong his suffering? Otherwise, how long can he survive if he keeps throwing up anything put on his stomach? We just are at a loss with what to do. What can we expect?

Re: another update...

Dear Anp,

I am sorry to hear what your dad is experiencing right now. This is such a tough time for you all and I went through the same with my dad. Have you been in touch with your dads doctor about this, especially so with regard to your dad passing out? Just noticed in your post that your dad is under hospice care, have you spoen with them about all of this?

As to your dad not being able to keep solids or liquids down, has this just started recently? Is your dad on any anti- nausea meds right now? My dad went through this as well and he was on various types of anti-nausea meds to deal with this. He went through a variety of types and combinations to try and help with this with varying amounts of success. In my dads case, he started bringing up a lot of his meds before they had a chance to work, so he was given an anti-nausea med that would dissolve under his tongue without him having to swallow it, Buccastem it is called here in the UK and that worked quite well for him. Suppositories may also be an option for your dad here, but his doctor will be able to help with this.

I don't know the rules regarding hospice and IV's over in the US, hopefully someone else will be able to help here. But I would strongly suggest that you get either hospice or the doctor to see your dad as soon as you can. Please let us know how you get on here, and also, please remember that we are all here for you and know what you are going through right now.

My best wishes to you and your dad,

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: another update...

anp......my heart is with you and your family as this is one of the most difficult decisions we have to make on behalf of our loved ones.  I believe that this is a time where most and foremost the most possible level of comfort needs to be achieved for your dear Dad in whichever way we can get there.  It is likely that your Dad is nauseous and the slightest amount of liquids including, saliva could increase his suffering.  Go with your heart, listen to those who, have travelled this road and allow Hospice to do what they are trained to do.  Your Dad has the most caring family and he knows that he is in good hands.
Hugs and love,
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: another update...

Anp,

I forgot to say as well that my dad started getting his meds through a syringe driver and that helped him enormously. It meant that he wasn't taking anything orally and his meds were going into his body through the driver constantly, and that helped so much with the nausea. Perhaps that is something that you could discuss with hospice as well. Thinking of you right now.

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: another update...

I am so sorry for what you are going through.  It brings me back to  the last little bit of time I had with my Dad.  I agree with Marion - his comfort is what needs to be considered above all else right now.  Hospice did not give Dad IV... he was so small that it would have gone directly to his lungs anyway since it really had nowhere else to go.  It was also decided that it would have prolonged his suffering, which we absolutely did not want.  In the end stages, a body starts to reject food and liquids because that is what it is meant to do.  Follow your heart and the advice of doctors and the hospice team... you (and they) will know what's right for him.  Please know I am praying and thinking of you and your family.

Jen

Re: another update...

My father has tried so many different types of nausea mediciation, and some will give him a bit of relief, but nothing has seemed to take it completely away. He has tried the one that dissolves under the tongue, along with creams, pills...you name it. He had been on a regular cycle for weeks where he would be sick for 4 days and then better for 3. The doctor seemed to think his body was rejecting the food and that would make him feel a little better for a few days, so he would eat. Then the process would begin all over again. He has just this week not been able to keep any liquids down, and he has not had his normal "better days."

I have spoken with the nurse (who is absolutely amazing!) and she said after consulting his doctor that the blood pressure variations are just part of the cancer taking its toll on his body. They have tried just about everything possible. I just am not sure what to expect now. I wonder if he is getting any value from sips of water he takes before he throws it back up. I will have to check on the syringe driver. That sounds like something that might help.

Re: another update...

Dear ANP, the bottom line at this point is to make sure your Dad is comfortable.
The only suggestion is one we did for my mom and that was to keep her lips wet
so that they didn't dry out and hurt. We also gave her very small drops of water here and there from a teaspoon. As long as your dad is comfortable, his own body will take care of the rest. Teddy ate a bit until 2 days before he passed and my Mom who was just old didn't really eat for about a week. Hospice has a book on what to expect and if you ask they will give it to you. It tells what to look for up to a month before passing. I found it really followed what happened. My thoughts are with you at this point in your lives.

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: another update...

Things have changed again. Dad was feeling a little better last night and asked to eat tomato soup with cheese toast. We were nervous about him trying it since he hasn't been able to eat in 5 days. To our surprise, he kept it down! However, first thing this morning he was sick with the first sip of liquid. Has anyone experienced this? We are so confused! Is he is coming out of this, or is this normal? This whole experience is such a roller coaster ride, and it is taking its toll on everyone. I'm afraid to get my hopes up, only for them to come crashing down again. So many doctors have told us that they have never seen a patient like my father. He has become the definition of rare and unusual conditions. With that being said, that is why I wonder if anyone else has seen these type of symptoms.

9 (edited by marions Fri, 04 Nov 2011 13:00:47)

Re: another update...

anp....did your Dad move around a bit, last night, after intake of the meal? Has his nausea increased or decreased? The big question is: did your Dad digest the food?  Often times, when my husband ate it would just sit in his stomach causing an increase in nausea. At times, digestive enzymes helped things along and other times it did nothing for him. When did your Dad have his last bowel movement?  I took notes of everything with the hope that I could pinpoint certain reactions.  There is a generality of symptoms we can relate to on this site however, there always are the exceptions as it is the case of your dear Dad.  That is were the physicians come in and as you say, they are stumped also. 
I so much understand your feeling of being overwhelmed with the continuous, unexplained occurrences.  This is a trying time for all.  Remember that taking your Dad to a hospital always is an option (if so he agrees.)
My heart is with you.
All my best wishes,
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: another update...

anp - a rollercoaster is exactly what it is!  I hope you can figure out the cause of his problems soon and he can enjoy some food over the weekend without feeling horrible afterwords.  Thinking of you and your family.

Jen

Re: another update...

Thank you all for your support. You will never know what it means to me and my family.

Marions- My dad didn't get up and move around afterwards, but his nausea has certainly increased as he has gotten sick several times today already with anything he tries to drink. However, it does not appear that any of the food has come up. I wonder if it is like you say, just sitting on his stomach causing the nausea to continue and worsen. He has a bowel movement about every 4 days. As of today, it's been about 3 days since the last one. There seems to be no rhyme or reason to anything anymore.

Also, does anyone know if lack of food can affect blood levels? He is on coumadin blood thinner, and all of a sudden today his level was 3.8 which is VERY high. Could there be a connection or does the cancer cause this?

I'm sorry to ask so many questions, but this site has proven time and time again to be the best resource of information about this horrible disease. I value each and every one of the opinions I receive. Just knowing that others can fully understand is so helpful.

Re: another update...

ANP, is your Dad in Home Hospice Care? If so I am curious as to what they say about all that is happening. And how often do they visit? I know Home Hospice was such a big help for Teddy and they came 3 times a week toward the end. They should be able to help with the bowel movements, the eating, the nausea.
He should not be going through all of this discomfort.

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: another update...

np...don't be sorry for asking questions this is the right place.  Do remember though; we are not physicians and advice given should be confirmed by a doctor.   
On this site we deal with two distinct weight loss issues: 
cachexia is the loss of body mass that cannot be reversed nutritionally
and
malnutrition a condition similar to the above but, can be reversed
Both conditions are somewhat interchangeable with our CC patients as there are overlapping symptoms.   They differ mainly in that for the chachexia patient, due to underlying disease; any intake of nutrition cannot be absorbed by the body, whereas someone malnourished easily can regain his body weight with the increase of food intake. However, the person is in a state of starvation.  Starvation can also affect blood chemistry which may complicate interpretation of test results.
Therefore, dear ansp, I don

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: another update...

Hi,
INR 3.8 is high but not in the dangerous zone,normally,hold the dose for a couple days and restart at a lower level.call your nurse for the recommendation.
I think the B M frequency is acceptable,it is related to the amount of hydration and solids that your dad's gut can processed.
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: another update...

Lainy- Yes, dad is under home hospice care. The nurse comes at least 3 times a week and usually more. Since I last posted, they have tried one last combination of medications including steroids. It has seemed to help slightly. He had 2 really good days over the weekend, and even kept some food down. However, since Monday, he hasn't been able to eat much and is still throwing up from time to time.

Marion - Your information was very helpful and makes sense. My dad continues to lose weight at a moderate speed. I am not certain that his body is processing what little amount he is now able to keep down.

He had his PT/INR checked again and it was better at 2.4. They also checked ammonia levels and they were normal. His blood pressure and heart rate had been fluctuating a lot, but that has gotten better. But the odd thing is that he is SO tired. With all his vitals better, he is more exhausted. The nurse said that the disease can do that.

It is so hard to figure out where we are with all this. He seems to do well for a few days, then bad again. The only constant I can see is that he continues to get weaker. Even getting outside in his wheelchair for a ride down the street with his grandbabies completely wore him out. He still is not in a hospital bed, but I'm afraid that may be coming.

Re: another update...

anp....there are tends indicative to this cancer and then there are the exceptions to how this cancer behaves individually.  Know that you are doing everything right and that your  Dad is receiving the utmost of care.  When my husband had episodes of occasional vomiting I would try to keep a log of the food eaten.  Somewhat of a pattern emerged and I would try to focus on those things he liked most and he was able to digest with the help of enzymes. 
If nausea persists then medications can be prescribed by the physicians. 
Our Percy had posted on this extensively
http://www.cholangiocarcinoma.org/punbb … ?pid=47439
Love and 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: another update...

Well, here we are a month later and dad is still here! They did not think he would make it to Thanksgiving. This has been the strangest thing I have ever seen. No one knows what to think anymore. One day we are afraid he will not make it through the night, and the next he is much better. Then it starts all over again. His hospice nurse has even commented that she has never seen anything like it.

The only constant is that he is getting much weaker. Still able to get up to go to the bathroom, but he has to use a transport chair. They tweaked his medication and now his nausea is completely gone. He has been eating sweets constantly. His hands were "blotchy" the other day, and he now has some apnea while sleeping. Most of the time when he is awake, he says he is "fuzzy." He knows exactly what he wants to say, but sometimes the words come out wrong. He is still seeing things, and people, but no one he knows. I was so very fortunate to have about an hour with him last week where he was completely coherent. I was able to tell him things that I wanted to make sure he knew. That has really helped me. Although, I still feel like it isn't real. Mainly because he has always gotten better through all the MANY close calls he has had over the years. This seems like one of those hurdles. I don't think I have fully accepted it yet.

My mother is working so hard to take care of him. I try to go over each day to help, but with small children, it isn't as easy as I wish it were. And one of the biggest things I think I have realized through all this, is that no one can fully understand how much a person, as well as the caregiver, goes through with this cancer. It has been one of the most heartwrenching things I have ever had to see. It is the hardest to see my dad when he is no longer himself. He has always been the "clown", making jokes and having fun. To see him this way, not even able to speak coherently at times absolutely breaks my heart. They say he may only have days, but he has fooled us many times before!

Sorry for such a long post. I just felt that it might help someone else out there who is looking for answers like I have. Sometimes just reading of others' experiences can help. I hope maybe this will. Again, thank you to all who have been such an encouragement to me through all this. What a blessing this site is!

Re: another update...

Dear ANP, many thanks for the update. Dad is taking his time, no hurry, he is not  ready. I really believe we pick our time as I saw that with Teddy even as he was passing. You are doing such a wonderful job just keep on doing what you are doing and you will never look back and have regrets. Glad they got the nausea under control. I sure would love to know who he is seeing! Stay strong and I know this time is so bittersweet but hang in and give some hugs to your Mom.

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: another update...

anp....thanks right back at you.  Be assured to know that your posting offers strength to many touched by this disease.
No, your posting is not too long.  You had much to share and we had much to learn from you.
I am astonished and surprised (in a good way) to hear that your Dad is doing as well as he is.  I am particularly impressed with the fact that his nausea has been brought under control.  That in itself is a miracle.
Watching our loved one's go through such significant physical changes always is difficult.  But somehow we adapt to the new situation with strength seemingly coming from nowhere. 
Your Mom, the primary caretaker should be applauded as should all of those tending to a loved one with a debilitating illness.  It is one of the most difficult jobs to do and yet if asked we would never not sign up for it. 
I wish for continued good days for your Dad and for your wonderful family.
Hugs and all my best wishes,
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