Topic: Update

Well it has been since October since I last posted.  My husband has completed chemo.  Lost 80 plus lbs, numerous blood transfusions, etc.  Now that's all the medical interventions! Just had repeat ct scan this week and had "slight" increase size in liver tumor.  Not so bad for a man off chemo since Oct.  He does have more pain at this point.  Other than the pain and being very weak he is doing ok.  March 24th will be one year since diagnosis.  No further treatment is available for him unless you consider going to Europe where they have the only 7 clinical trials in progress.  So with that being said, we are praying for a miracle.  If we can't get a miracle then we are praying for peace and comfort.  My husband said he doesn't want to hurt.  I am asking for suggestions for pain control.  He is on Fentanyl patch 25mcg every 72 hours, Oxycontin 5mg every 4-6 hours prn pain.  He has been taking more of the Oxycontin lately - about 25 - 30 mg in 24 hour period.  Any suggestions or recommendations?  What about low dose steroid?  His kidney function was damaged as a result of chemo.  Stable, producing urine but BUN/CR still elevated.  I welcome any recommendions.
Thank you
Wilma

Re: Update

Dear Wilma, I am so sorry to read this latest news. I am wondering if you ever sought out a 2nd opinion? When Teddy had reached this point, I had called in Hospice and they were wonderful in helping us through. They started him on low doses of Morphine and increased as needed all the way through. Fentanyl never worked for him. The Morphine not only worked well but agreed with his system. I am wishing you the best that can be and if you need to get more personal, please feel free to e mail me.

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: Update

Hi Wilma,

It is nice to hear from you. It has been quite some time. I am also sorry to hear the news. Have you considered visiting another major cancer center or sending scans to see if someone else can help? It seems as though your husband has had a difficult time of it. As for pain control, my daughter Lauren gets relief from morphine. She takes 15 mg. long acting morphine 2 times a day and 30 mg. fast acting morphine as needed. Some days she need a lot and some days not. She has hydrocodone, but rarely if ever takes it because she feels it is ineffective. Once in awhile a few Tylenol added will help. She always has back pain and they feel it is because the right side of her liver has compensated and grown for the left side and is pushing on her spine. There is no evidence of disease in her spine. I hope and pray for a miracle for your husband. Please come back and visit a little more often.

Loveand hugs,
-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: Update

Say, Pam, how was the big trip that Lauren and Gio took?

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: Update

Thanks for asking, Lainy. I will post in the member's cafe section.

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.

6 (edited by PCL1029 Fri, 25 Jan 2013 20:30:47)

Re: Update

Hi, Wilma,
"My husband has completed chemo.  Lost 80 plus lbs, numerous blood transfusions, etc.  Now that's all the medical interventions! Just had repeat ct scan this week and had "slight" increase size in liver tumor.  Not so bad for a man off chemo since Oct."
First, I will pray for your husband and may God's Grace upon him and lift and/or reduce his burden of suffering.
Second, ,part of the 80lbs he lost might be the fluids in his abdomen and not completely as the lost of body weight;blood transfusions are used to give your husband for anemia,so he would feel better and make him strong.

"I am asking for suggestions for pain control.  He is on Fentanyl patch 25mcg every 72 hours, Oxycontin 5mg every 4-6 hours prn pain.  He has been taking more of the Oxycontin lately - about 25 - 30 mg in 24 hour period.  Any suggestions or recommendations?"

With regard to the pain management of your husband; Oxycontin IR 5mg q4-6h prn for breakthru pain and Fentanyl 25mcg patch  q 72 hrs are relatively indicated to me that your husband's pain is not the acute sharp pain but the  heavy dull pain that bothers him the most. BTW, the dose of your husband's pain medication are at the lower end  of the scale and you should not worry to much about it.
"His kidney function was damaged as a result of chemo.  Stable, producing urine but BUN/CR still elevated."
How high are the BUN/CR?  How's his ammonia level? does he show signs of confusion at times? The pain meds at this level may not be enough to cause confusion, and the ammonia level will help to understand what cause the confusion if happened.
I am not a doctor' but I agree that any chemotherapy that contains the platium group(cis,carboplatin and oxaliplatin) will no longer helpful to your husband's CCA due to poor  kidney function.But there are many other chemotherapy and targeted agents such as Xeloda,  is  cleared thru nonrenal mechanisms and unless the CRCL<30; it can be given to patients with renal dysfunction with dose adjustment ;sorafenib is a targeted agent that can be safely given to patients with renal insufficiency,again with adequate monitoring and dose adjustment since it is only partly excreted by the kidneys.Paclitaxel under go minimal renal excretion,and has been safely administered to patients on chronic hemodialysis.(--- from up-to date .com, literature review on Chemotherapy-related nephrotoxicity and dose modification in patients with renal insufficiency.Nov.2012)

What I am trying to say is this,  get another opinion from another medical oncologist from a larger hospital ;MD Anderson or other university hospital
for a 2nd opinion to see whether your husband is truly out of chemotherapy or targeted agent to treat him; may be there are still medications that can prolong his life and provide a better quality of life to your husband.
In short and based on the limited info. from you about your husband, I believe there are still options for your husband and MD Anderson may be a place to go to since they are more chemotherapy oriented unless you have already done so.
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: Update

Wilma....I would like to add that your husband should not have to suffer any pain; there is plenty of medication available and his physician will address it accordingly if and when he/she is notified.  Stay aggressive on this. Regardless of whatever other treatment options may become available; I would focus on immediate pain reduction.  Keep in mind though that there may be side effects such as lack of lucidity and lack of bowel movements.  The later can be addressed simultaneously.   
Please, make the call to the physician and please keep us posted.  We care.
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