Topic: New to the site - concern about quality of life for mom

Hi everyone,

I have been reading several of the posts and thank you all for sharing.  My mom is 78 and was recently diagnosed with CC - a 6 cm tumor that is located in both lobes.  She is in the moderate stages of Alzheimer's. Currently she has very little short term memory, most often sits in a withdrawn state and cannot function without assistance on a day-to-day basis.  She is somewhat alert at times.

Because of other health issues and concerns she is not a candiate for surgery and would not tolerate chemotherapy (she has COPD, heart disease, diabetes and recently diagnosed with a bladder tumor as well).  The oncologist has suggested Y 90 radiation treatment and we were told that it could prolong her life 6 months to a year.  While we really want her with us for as long as possible, we are sruggling with a quality of life issue. Yes, the treatment will prolong her life - but there is a concern that the Alzheimers will worsen with the effects of each phase of the treatment.  Because we really wanted her to be the one to make the decision, we explained the treatment process to her many  times.  During most of these discussions, she agreed to have the treatment so we are moving forward. 

Has anyone had experience with a similar situation?  This is one of the most difficult things that I have ever experienced.  I am so worried about the road ahead for all of us and I can hardly stand to see her suffer.

Re: New to the site - concern about quality of life for mom

Hi Tammy,

I wanted to welcome you to this site, but I'm so sorry you had to find us. I have not been in your situation, but I still wanted to welcome you to this site and say I hope someone else will be along soon to help. My daughter is the one with CC. She has had Y-90, so I could help with questions you had about that. Feel free to ask anything. How unfair that your dear Mom has Alzheimers and CC. I hope you decide what is best for your Mom and she is kept comfortable and pain free through all this. Bless you and your Mom.

Love and 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.

3 (edited by PCL1029 Mon, 11 Mar 2013 14:49:26)

Re: New to the site - concern about quality of life for mom

Hi,
Where is your mother currently receive  the diagnosis and treatment suggestion? and who are the doctors?,It will be useful for other patients if they are in the same situation and areas looking for help.
Since your are in the  Chicago area and I am too.  I will recommend Northwestern Univ. interventional radiology consult if you are ready to go for radioembolization. they are the leader in this field internationally.
However, the patients over the age of 65 on this board who  had received radioembolization with Y90 did not have the best outcome that we hope for,especially with other health issues  involved. This will my only concern for your mother. Quality of life over quantity;providing the best supportive care are also viable ideas, But most of the medical literature will tell you age is not a risk factor in deciding treatment plans but comorbidity does.  If your mother's tumor s do not metastasized to other parts of the body, without treatment, there is a good chance that she can see her 79th or even 80th birthday apart from counting in the other health issues. CCA is a relatively slow growing cancer, In my case, my most recent resection in 2010 indicated it ,the tumor grew from nothing to a size of 2.5x3x3.5cm in roughly one year.
I am a patient of this disease for 46 months now but make sure you understand I am not a doctor but just a patient having the same disease as your mother. so my observation is purely on my own without medical research to back me up. therefore  medical oncology and radiology consult are needed if you want to make a sound medical decision.
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: New to the site - concern about quality of life for mom

Dear Tammy, welcome to our remarkable family but sorry you had to join us. Is Mom capable of making this decision? Personally I always wonder how much we can expect our loved ones to endure.  My own opinion is, if it was my Mother and she was not healthy otherwise, I would say enough is enough, but it is not my decision. Like Pam said the most important thing is her comfort. Guess I would ask the ONC what the side effects could be then make the decision. What ever you decide it will be the right thing. Listen to your gut it won't steet you wrong. Please do keep us updated as 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: New to the site - concern about quality of life for mom

I would like to add my opinion that Y90 is not easy on my sister or my friend who both u set went it in Jan and are only 50 and 54 years old respectively. Additionally, my almost 90 year old father has Alzheimer's and is under my care. I'm sitting in the OR recovery room w him right now after a painful but minor surgery. This surgery is necessary because his short term memory is no good and he has dAmaged his body repeatedly pulling out his Foley catheters (and the Occasional IV). Cath is for enlarged peostste and likely prostste cancer (they dont treat for this at his age) I'm starting to pray that God will take him sooner than later so he doesn't have to suffer the progression of any of these conditions. Also, two years ago when his drmentia was only early stage, he created a "directive To Physicians" stating that if there is no chance for a cure that he just wants palliative/comfort measures. this makes my redponsibikity as medical power of attorney much easier. so we have a DAnR and recently created a POLST (Physicians Order for Life Sustaining Treatment) which very specifically spells out which measures we do and do not want in the event of a life threatening condition. That said, each family must make this very personal decision. Bless you and your Mom
Willow

Willow

Re: New to the site - concern about quality of life for mom

My mother was diagnosed 4 weeks ago with CC Stage 4 as well. She's 85 & is independent & active. She still walks without any assistance, can still do household chores & looks good & healthy for 85. Most people think she's only in her mid to late 60's. We've been to 3 oncologists & they all have the same treatment plan: Gemzar standard dose 800mg 3 weeks on, 1 week off. We were told it's not curable but treatable. One doctor said 3-6 months to live, but with what I've been reading here, a lot of them are stage 4 & were also given months to live but are still here posting after 3+ years. When my mom was told that it's not curable, she does not want chemo at all. She says she will die anyway, why jeopardize the quality of her life of what is left. She wants alternative medicine, but it's not covered by Medicare and she cannot afford it. Our only option right now is chemo and nutritionist provided by the oncologist which are both covered by Medicare.

We've been convincing her to at least try one round of chemo while doing strict diet/nutrition & if she cannot handle the side effects, it will be stopped. What other options do we have that may be out there that we may be missing? I would appreciate any suggestions.

Re: New to the site - concern about quality of life for mom

Dear Megastar, welcome to our remarkable family but sorry you had to find us. Oh gosh, this is the 3rd one today on an older person. If I was your mother I also would choose to just live with more quality. BUT it is her decision and a very tough one to make. My husband at 78 chose quality as well and we never regretted it. This is one if the biggest decisions anyone will ever make. You are right, that we have many who have lived longer than the what the ONC said in the initial Diagnosis. There is one, gosh I can't thnk of the name, but took NO treatment and is still with us after like 4 years. We were not born with expiration dates on the bottom of our feet! Your Mother sounds like a very wise lady! I am not one to believe in special diets and I believe just doing a well rounded diet is ok at this point. None of these diets have proven a thing. Its more important to eat or graze all day to keep ones energy up. When the ONC said 3 -6 months was that with or without chemo. My Teddy asked the ONC how long the chemo would buy him and when the ONC said a month he opted out. Please know that there are no right or wrongs. I followed my gut for almost 6 years and it never steered me wrong! Best of luck to your family and Mother and what ever decision you make is the right one! Please keep us posted as 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: New to the site - concern about quality of life for mom

dear new friends:

As to y90, I just had it in february. It is not easy. I am 55 and in excellent health otherwise. Ther two procedures, one to map and one to infuse the beads, are two weeks apart. They both go through your femural artery, which can be painful and difficult, and require hours of laying on an xray bed and also breathing when you are told to. The infusion itself can be painful - - got me sharp right between the shoulder baldes, and I have a high pain threshold. The two weeks following the y90 I ran fevers every day and the liver hurt. Good thing I still was on narcotics from the abdominal surgery several weeks earlier. So I must say I cannot see putting my grandmother, who had alzheimers, through this. That is my feeling. I just want you to know of my recent experience and I will be posting it under the propoer discussion board soon. But of course you must decide for your own family.

As to the chemo, gemzar (gemcitibine) has very few side effects and is generally well-tolerated as compared to the platinum drugs. It can be very effective alone. But remember that many of these cc cancers are not responsive to chemo at all and there is no way to know ahead of time. You just have to go through it and wait on the next set of scans. Medical procedures of any kind are not fun. My onc told me that if my cancer was not responsive to chemo I had 6 to 9 months but if it responded, I could have many more months, maybe years. None of us really knows. As Lainy says, no expiration date has shown up on my feet yet!!!

I wish you all the best. Many thoughts go out to you both today smile and feel free to come back with questions, that's why we are here!
Holly

Re: New to the site - concern about quality of life for mom

Dear Holly, sure glad no dates printed on your feet! I think the Y90 is similar to Cyber Knife but  when Teddy had CK there was no pain. They did shoot some beads in but he said it didn't hurt and the CK was painless. Only thing that happened is he did get tired after the last treatment. CK is done in 3 -5 treatments and only takes a week. I think his biggest concern was if he had to go to the bathroom while he was laying on the CK table. OK so it did happen once. They slipped him a pan!  Your 55? A mere tenage! Keep up the good work, I love your posts.

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: New to the site - concern about quality of life for mom

Yes, Lainy, I forgot to mention that! Even when you empty your bladder completely before they wheel you in, it's an excruciating wait to pee. You have to hold you leg through which they got into the femural artery perfectly straight for many hours after the procedure - - so you are only allowed a bedpan and with the leg it is nigh impossible. Torture!

Re: New to the site - concern about quality of life for mom

Megastar....I am sorry for you having to make a decision based on what is offered to you by Medicare.  Nutritionists have a place in healthcare however; I would inquire as to what it is that will be offered to your Mom.  Is it possible for your Mom's GP to be involved and would he/she able to order the same services for your Mom?  The way I read it, your Mom was quite clear about her objective in that she does not want to do chemotherapy.  This is such a difficult position to be in, my heart goes out to 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

12 (edited by marions Tue, 12 Mar 2013 19:37:07)

Re: New to the site - concern about quality of life for mom

Tammy....also wanted to welcome you to our site. The latest postings appear so appropriate for you and for Megastar.  I wish you the best in making a decision no one wants to make.  But for the welfare of your Mom, I know that you will do anything to protect her.    Please keep us posted.
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: New to the site - concern about quality of life for mom

Thank you all so much for your kind words.  You are truly a remarkable group.  Mom is still wanting to move forward with the Y90.  The diagnostic will be completed in the morning. If she still qualifies as a candiate for the 1st treatment, we will talk with her several more times to ensure she is comfortable with her decision. She also has an appointment next week with her neurologist.  He will assess her to determine the progression of the Alzheimer's. 

Yes, I live in Chicago but my mom lives in the Atlanta area.  Her oncologist is Dr. Sankeeth Reddy.  Her radiologist if Dr. Jason Levy.  The procedure is going to take place at Northside Hospital in Atlanta. 

I will keep you posted and thanks again.