Topic: when to call?

My husband is considering stopping his xeloda, and gem/cis didn't work for him. Back in Sept. 2011 OSU said he had 6 months to one year. He has lived 6 months. How do we know when it is time to call hospice in?I heard that your doctor has to write a recommendation that you have six months or less to live.  He doesn't really want to try any other treatments and surgery is out. When hospice comes into the picture, will he still see his oncologist or is everything through the hospice doctor's. His biggest wish is to stay at home and I have done everything I could think of to make that possible for him. He is in a bit of pain and we will see a pain management doctor this week to get it under control  hopefully. We are just nervous how well they will help him. Does anyone else have a lot of pain from this cancer?

Re: when to call?

I find it very difficult to send this email to you because it is so sad what your entire family is dealing with.  I recently took care of my Mom and had hospice come in when Mom said she did not want any more chemo.  She only had one treatment and then became very, very weak and just wasn't herself.  I do not believe you will have any problem with the oncologist setting up hospice.  Be sure to check what your health insurance coverage is.  There was no reason for my Mom to ever see the oncologist again, although they offered that she could continue to go there for fluids which she did not.  She had enough with doctors.  There was a nurse (no doctors)  who came to my Mom's 1-2 times a week to check her.  Aids would come for one hour a few times a week to assist.  All medications that were required were sent to the home and kept on hand.  Most of the time I had to give my Mom the meds.  I was able to call the hospice nurse any time day or night with questions.  If necessary, they were on call to come.  My Mom did not have lots of pain, but did have lots of anxiety.  I hope this helps you.  I pray for you.

Re: when to call?

Hi TFLORY. I am so sorry to hear of the bad time your husband is having. IF he decides to quit treatment I would ask the ONC if he feels it is time to call in Hospice. The ONC just places a call and they are usually there the next day to interview you. I have not heard of any Insurance not covering Hospice but I would double check.
Most Hospices can be called in up to a year ahead of time. They will start with 1 nurse once a week and increase visits as needed. When you get further along an aide will come for showers. They will check all vitals when they come and regulate the Meds. They then become the middle people to the ONC and usually you will not see him again although ours said to call him anytime. We never did. Hospice does a good job of pain control and you probably would not use any other doctors. I had them put a hospital bed in the living room where it was bright and airy and also comfortable for visitors and Teddy's BIG TV. The bed was more comfortable to him than his and it is easier to get in and out of. Oh also, when the family came for dinner and if Teddy didn't feel like eating he would still be with us although in bed. Unfortunately he did have a lot of pain and his pain tolerance was extremely high. They did a great job contolling it with Morphine. One more thing. I am very small and even though he was small he was VERY strong even at the end and I was afraid I couldn't handle him. I took him to a Hospice Facility for the last 3 days and honestly, I could have done it at home. That is my only regret through the whole 6 years. We had discussed it ahead of time so had all our ducks in a row. But, he did that for me. I really feel I could have done it.


Re: when to call?

Hi T,

My husband was diagnosed 10/2010 and was on a similar chemo.  He also decided to stop treatment.  So January 2012 was his last infusion.  It's been 3 months without chemo (although he is still getting Avastin and Zomeda).

His pain has definately increased.  He started with the occasional 5 mg Oxi and is now up to 5mg 5 x per day (which is really not that much).  I'm sure pain varies from person to person depending on where the mets are.  My husband has mets to the ribs, spine and liver.

There are pain management and palliative care specialist that can work with you to manage the pain.
We are also in the process of seeking that kind of support.  I'll let you know what we learned and I'm sure others will respond.

Keep us posted and take care.
I'll keep you and your husband in my prayers.


Re: when to call?

Hi Tonya,

I am sorry your husband is not doing so well.  It breaks my heart that he has just had enough. I know he has had more than enough hard times with his colitis and now this. I hope he can be made comfortable and pain free. I will pray for you and your family that peace can be found. To answer your question about having pain, my Lauren has pain in her back a lot. Once in a while she will have pain in the front too. But it is mainly in her back. She takes Morphine and it is tolerable most days. She is very tough and never complains. I would be whining all over the place. God bless you and your family.

Love, -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: when to call?

Hi T,

My mother also has had a lot of pain associated with this form of cancer and has been on a 50mg patch of Fentanyl.  She has now been pain free during these last few months of life that she has left.  She too wishes to be home.  I pray for you and your family.  God Bless all of us.


Where there is great love there are always miracles!

Re: when to call?

Tonya....I would just like to add that one should assume that pain will increase with disease progression. But as the others have mentioned, it can be and it will be controlled with medication therefore, the visit with the pain management team will be of great use to you. 
Hang in there and lean on us.
Hugs and love,


Re: when to call?

Tonya:  Having just gone through this with my husband, all I can say is that you will know when it's time to call hospice.  My husband Tom started to go 'downhill' on the Monday before he passed.  First I noticed that his urine output was way down and he just did not look good and was very weak.  I called his doc and got him in for an appointment that day.  He was hospitalized and his doc didn't like his color.  He said he looked 'gray' or 'ashen'.  On Tuesday Tom said it was time to call all the kids.  On Wed he said "I want to go home, I will NOT die in this hospital".  He came home on Thursday and 'Pallative care' people were here by 2pm.  I told them that he didn't need Pallative care, he needed Hospice.  They agreed and sent the hospice team in.  Tom's kidney's had basically stopped working and he passed away peacefully at home on Sunday.  The time frame is exactly what they say when the kidney's fail, 7 days.

I'm glad that he was at home when he passed.  Alebit it was very sad, but very peaceful as well.  He knew he ws with the person that meant the most to him.  Two of my daughters, my son in law and three of my grandchildren were here with him when he passed.  (His own children were not here).

It's always a hard decision to make.  Tom and I could have had hospice coming in much earlier, but in Tom's mind it was 'giving up' and he never wanted to give up.  In the end, I made the call.  The last 3 times he was hospitalized, we had a DNR on him.  He did not want to live if he could not have his quality of life.  I'm the same way and all my children know that.

Hospice can be a wonderful experience and it was for me.  The ladies were very caring, came within a 1/2 hour if I called them.

My heart goes out to you and your family.  I know this is not easy to go through.

Love and Hugs,

Re: when to call?

Hi everyone! The pain doctor gave us several options including a nerve block to the celiac ganglion. We are considering this. Any one have any advice?Thanks.