Topic: My husband has been Palliative since February...

but sometimes I think he is getting better. I am so confused. George was diagnosed with cc in December 2010. He had a resection in February 2011 followed by agreesive chemo and radiation until November 2011.  He never fully recovered from the operation or treatments and always felt unwell. In his scan of Jan 2012 they thought the cancer may have returned but then said no. In January 2013 they see "haziness" but think its fine again. He was referred to Palliative Care for pain management that months as well.  In February he woke up on a sunday morning extremely agitated and threatened to rip down the walls and smash out the windows. I called Palliative who sent in a prescription to calm him down. He took it and went to bed, he then started towards a coma. The palliative care told me that this is the end and gave me the DNR stuff for him.  Another nurse came and said i should get him to the hospital as he could have suffered a stroke or a seizure....so i called an ambulance. He as there for about 8 hours and determined he was in liver failure and gave him some narcan and lactulose and he has been good ever since.  We went to see his oncologist as they believe he has a recurring cancer hence the feeling of unwellness but do not believe chemo will help and gave him a few months to live. That was in April and while he does have a hospital bed in the living room and cannot work, he is pretty good. He took a weeks trip to Nova Scotia (from Toronto) to see relatives and putters around the house. They still believe he is living on borrowed time but i look at him and he is LIVING! He has no appetite, takes huge amounts of lactulose everyday with over 30mg of Morphine everyday for pain. I know his symptoms are just well managed and it wont last. If he even misses a dose of lactulose he starts slurring his speech and he gets confused really easily.  His ascites comes and goes, I get alarmed then it dissappears. I don't really know what his happening or what i should expect. Has anyone else dealt with anyone like this? I have been reading these forums since the beginning and this is my first time posting my situation....Thanks!

Re: My husband has been Palliative since February...

Dearest Deedlebug, Welcome to our remarkable family but sorry you had to join us. I feel just terrible for this horrible Journey you and your Husband have been on. My belief is that he just is not ready to leave yet. Through all of this have you ever had another opinion? I am at a loss for advise. I do have a list of what to expect as time draws nearer and my Teddy had followed it pretty closely. I would be happy to email it to you if you like. The most important thing is to keep him comfortable. Teddy was on 75mg of Morphine 2 X a day with breakthrough hourly doses of 50mg. I wish I could tell you more except that I believe we pick our own departure time and he seems to be waiting for something. Let me know if you would like the 'list'. Be very 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: My husband has been Palliative since February...

Thanks Lainy.  His oncologist, surgeon and palliative care doctor all believe this is the case. They believe the cancer has mets to his bowels and stomach. His newest sympton is sulphur smelling burps that could clear a room.....is that the cancer? I forgot to mention that he was hospitalized for 2 weeks in April with sepsis...the symptoms for that came on in only a couple of hours. Lainy please send me the list. Any information i can get will help me.

Re: My husband has been Palliative since February...

This is what I have learned; high ammonia levels cause confusion in the brain. It is something we hear of frequently on this site and is associated with end stage liver disease (hepatic encephalopathy.) The musty smelling burps most likely are related to the obstruction in his abdomen.  (I am not a doctor hence all information given by me demands to be cleared with the medical professionals.) 
What is amazingis how well your husband responds to treatments.  He is a strong person, as are you dear dedlebug.   My heart is with you in this difficult time.
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: My husband has been Palliative since February...

My husband is quite stable still but has developed difficulty swallowing. Not all the time but sometimes....has anyone else experienced this?

Re: My husband has been Palliative since February...

Hi Deedlebug, Yes. It could be from something as simple as Acid Reflux but definitely call the ONC as he should know about this. Otherwise how is George doing? And how are you doing? Please keep us posted as we are not only nosey, we truly 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.

Re: My husband has been Palliative since February...

He still has a lot of strength. We went to a Blue Jays game on Saturday and he managed well. He could not understand the scoreboard which is alarming because he eats, sleeps and breathes baseball. He is getting alot of small red dots on his abdomen now and his ascites seems to come and go. So all in all, he is still very stable. Lainy, he doesn't see his oncologist anymore, just palliative care.

Re: My husband has been Palliative since February...

When T was in Hospice Care at home they had someone who acted as an intermediary with the ONC at times. Do they do or say anything when you show them new things that pop up? The rash could be an allergic reaction to something he is taking. Best of luck and 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: My husband has been Palliative since February...

just thought i would give a brief update. since last post George has been hospitalized at least 8 times for delirium. He is in the hospital right now recovering from a horrendous episode on Saturday. he gets very agitated and starts flailing and hittting himself. he gets a very high fever and shivers uncontrollably and bowel incontinence. i worked with palliative care on the phone until i needed to call an ambulance. after injecting him with a large dose of haldol they got him under control. they did a ct scan on his head and then an ultrasound on his abdomen. no mets to his brain but the ab scan confirms liver and bowel mets which explains the toxins being dumped into the bloodstream. they are sending him home tomorrow on haldol 4x a day along with his paid meds. they have not indicated how much time is he has or what to expect next. has anyone had this type of experience?

Re: My husband has been Palliative since February...

Ah Deedlebug I am so sorry about George. Teddy was on Morphine and as it needed to be increased constantly he did get hallucinations and they put him on Haldol that worked beautifully. Did they check his ammonia levels? If they are high that too can cause the delirium. Ativan works for agitation. Have they not told you what to expect or how far along they think he is? IF you feel he is getting near the end of his Journey I have an article I can  send you of the 10 signs the end is near. I only send it if you want it and just email me if you do. I feel the more we know the less the fear. Oh and Haldol will make him sleep more so don't worry if that happens. I've been where you are and this is a silly remark but I think all these things are preparing us for what comes next. Do not go through this alone that is why you have Hospice. We are here too so use us we will help as much as we can. 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: My husband has been Palliative since February...

Deedlebug....don't hesitate from asking as to what is to be expected.  Is the palliative care team checking in on a regular basis or do you have to initiate contact?

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: My husband has been Palliative since February...

Deedlebug -
So sorry that things have gone the way they have. I guess the question I have has to do with Palliative care versus Hospice. I know we have both programs at work and the Hospice team is more aggressive with end of life care versus palliative care. Should be the same thing you would think but the rules are different for one versus the other and hospice is often more responsive with medications and other treatment.
The problems with any disease affecting the liver is that it is the mechanism to clear waste products out of your body and it metabolizes all medications to get them out of the body. Sometimes with oral pain medications or even the stuff like Haldol is the body is not clearing them right and so they build up and contribute to the confusion. You may ask them for another route for medications such as a pain patch that gets more medications into the blood without as much build up. Still goes through the liver but after it does take affect.
The Haldol may not be the only drug you need too. If you don't feel like the Haldol is working even with using the Ativan then keep talking to your team. There is a lot they can do.
The other thing you might want to explore is if you have a local Hospice House so that if you are not able to keep him at home, you have a place to take him which will keep both of you safe.
My thoughts and prayers are with you. Any questions just ask.

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.