Topic: Mom Recently Diagnosed

Hello! My Mom was diagnosed with CC in early December. She is 74 years old and wasn't feeling well for about 1 month before her diagnosis. She was hospitalized for a couple of days, had a biopsy and was given the bad news a week later. The cancer had spread to her liver, pancreas and gallbladder. Surgery was not an option, nor was radiation, and she was only able to tolerate  1 chemo session. She is still at home but is declining steadily. She is extremely jaundiced, her feet and belly are somewhat swollen, she is losing weight and her thoughts are at times cloudy. We were shocked and extremely saddened to hear her oncologist say that her life expectancy is 6 months. She has now been referred to Palliative Care and her doctor has shortened her life expectancy in half. It is hard for me to believe that she will be gone in a few months as she can still walk and can care for herself.  This is all very scary and I know that the worst is yet to come.

Re: Mom Recently Diagnosed

Dearest Fellini -
So sorry you and your mother had to join us here and so sorry that it has been the road that it has been for both of you. I suspect you are choosing the best path at this time, of course not the one we would want. I say at this time it's quality of life so go out if she is able and have some good times and memories.
Remember we are all here for you and you will always find an ear to listen.

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.

Re: Mom Recently Diagnosed

Welcome Fellini and I am so sorry about your mother. I am wondering if she is Jaundice why the Doctor is not ordering a stent for the bile flow. A lot of what she is feeling could be from that, the bile MUST flow. For the swollen stomach they can drain that fluid. It seems that things are not being done to make her more comfortable. I am wondering if you got a 2nd opinion, we are big believers in that. May I ask where she is being treated. You are not alone we are all here for you! Comfort is #1 and it doesn't sound like she can be very comfortable when there are things that can be done for her.

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: Mom Recently Diagnosed

Fellini...I would inquire with the physician the purpose of the scan. And, as Lainy has mentioned, see what they can do to eliminate the fluid. The stent may be problematic due to the blockage causing the bilirubin to rise however; I would inquire about this as well.  How much experience does your Mom's physician have with this particular type of cancer?
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: Mom Recently Diagnosed

Thank you all for the warm welcome and for your suggestions and recommendations. My Mom was being followed by an Oncologist at the Royal Victoria hospital in Montreal but seeing as she will not be treated with chemo or radiation, they referred her to the Montreal General's Palliative Care Unit. My Mom's bilirubin levels are elevated. They gave her an ultrasound and determined that she did not have a blockage and, as she is not vomiting and has regular bowel movements, then a stent would not serve any purpose. They also said that she may have to drain her fluids at some point but not yet. We were also told that all of her symptoms are a "natural progression" of this disease. We see her doctor next Monday. I will ask about a stent again and having her fluid drained (are these painful procedures?). Thanks again....

Re: Mom Recently Diagnosed

They should not be painful. My husband had many stent changes and was always given twilight sleep. I've not heard anyone ever say anything about pain with fluid drainage so not sure but I would ask the ONC. Again, while these things are not life threatening, they cause discomfort and we don't like that word when things can be done to help. That is what Palliative care is for to relieve discomfort. If she is so Jaundice that is the first and biggest sign of blockage. IF her ducts are in fact blocked it will lead to bigger problems like infection. Can you ask for another opinion?

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: Mom Recently Diagnosed

Fellini....thanks for explaining further.  Is your Mom living independently?  When meeting with the physician or others you might want to ask about reducing salt intake for your Mom and when/if diuretics would aid in reduction of fluid.  Mental confusion can be addressed with diet and other therapies as well.  At times laxative help with the removal of toxins.  Basically, you would like to have explained to you the typical progression of cirrhosis. All encompasses palliative care and I believe your Mom is in the right place.
Stay strong.  My heart is with you.
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: Mom Recently Diagnosed

Dear Fellini,

I agree with the others that your mom is in the right place.  Her quality of life and being comfortable and  as pain free as possibly is the most important thing for her right now.  Glad you found us, you too are in the right place for as much help and support as we can give.  Let us know how she is doing.

Thinking of you, your mom & family.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Mom Recently Diagnosed

Hi and welcome to the site. Sorry for what you all are having to go through. Wanted to extend a hello and a welcome and I wish you guys lots of strength, hope, and prayer.

Hope, love, strength...2013 and for the years to come, Porter.

Re: Mom Recently Diagnosed

Thanks to all for your advice. I will definitely speak to her specialist regarding stents and fluid drainage, as well as her diet. Although she was told that she can eat whatever she likes at this point, they've given her "Lax-A-Day" to be taken as needed. I was told that her jaundice was due to 'her liver not functioning' properly so I will mention this again to the physician. I was also told that her confusion was partly due to the morphine that she is taking and hepatic encephalitis - which again is a "normal progression of the disease" and nothing can be done. Getting a second opinion will be difficult due to the long wait to see a specialist. We have a public healthcare system which has many benefits but also some disadvantages - one being having to wait months see a specialist. My Mom is presently living 'independently". She lives in an apartment above me so I am with her in the evenings and week-ends. She is lucky to have a large circle of family and friends who come by regularly during the day while I am at work so she is rarely home alone. Hopefully Mom can be made more comfortable. I am glad I found this forum. Thanks again....

Re: Mom Recently Diagnosed

Fellini -
I did a little research into your health system and did find that you may be able to get some help in the home for your mother. In the US we have Home Health which can be an excellent resource for people who have conditions such as your mother. Also we have Home Care (private pay mostly) which can help continue her independence at home. I found that if you were to contact your local (your mother's local) CSSS you may be able to access some resources for her that would be beneficial and if not at this time, maybe later down the road. I did have a little difficulty since it was in French and I unfortunately do not speak French.....I had to use a translator so I may have missed some stuff.
Here is a link that will take you to information that may help.

http://www.santemontreal.qc.ca/aide-et- … -domicile/

Hope this helps some.

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.

Re: Mom Recently Diagnosed

Welcome Felini and so sorry you had reason to find us.  We are here for you and your Mom. I can't add anything that others haven't already said, but wanted to say welcome and add that taking care of yourself is important too.

Hugs,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Mom Recently Diagnosed

Welcome to this wonderful, supportive group of friends. Please don't hesitate to ask questions and vent if needed.
Hugs,
Lisa

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: Mom Recently Diagnosed

Thank you Kris. We are in contact with our local CSSS. They are providing us with a home care nurse that comes by to monitor my Mom's vitals once weekly and a home care attendant who visits twice a week for bathing. That is all that the public system can offer at this point. We are now looking into hiring some private home care help.