• dawnl
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  • Registered: Wed, 28 Sep 2011
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Topic: Hello again

Hi all, I introduced myself in October.  My partner T was diagnosed with cc in 11/09, was thankfully operable and then went through about 8 months of treatment.  She was having stomach pain this October that the docs were having a hard time diagnosing.  She eventually had a pet scan that showed a cluster of cancerous lymph nodes near her pancreas, which were causing the pain, and a number of other cancerous lymph nodes elsewhere in her body. 

The doc's best guess is that she has a year with chemo (gemzar/cisplatin).  She doesn't want to do the chemo, which is understandable.  Her pain has been under control for the past month or so but has been getting worse this past week. 

I will support her in whatever decision she makes. Saying no to chemo is one thing that she has the control to do right now and I understand how out of her control everything else is with this disease. 

I am just wondering if the chemo might actually make her feel better.  I feel like she is going down hill fairly quickly and I just want her to be as comfortable as possible and have the best quality of life she can while she is still with me.

Her oncologist says that the chemo should help with the pain.  Is this true?  For those of you who have lost loved ones to cc, do you think that the chemo helped or just made him or her feel worse?  She absolutely wants quality over quantity. 

I am so very sorry for the losses and the suffering that so many of you have experienced because of cholangiocarcinoma.  I could really use a little advice from someone who was a caregiver near the end of life. 

Thanks and happy holidays,
D

  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
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Re: Hello again

Hello Dawn, I am so sorry to hear about your partner. Ah, the old chemo or not to chemo. It IS a very personal choice and my husband also chose not to chemo and never regretted it. With that said, everyone is so different with this CC. 
At Teddy's decision of no chemo we called in Hospice. They will come up to a year and give palliative care. They were wonderful. If he needed more RX  it would be here in the evening. Don't think of Hospice as the end, think of it as care to keep the patient comfortable. Teddy was in their care 4 months. He wanted quality as well. The big question to the doctor was  how much time would the chemo buy him and when the ONC said a month that about sealed the deal. I am wishing you the best in this awful journey and try to spend your time making wonderful memories.

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.
  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,488

Re: Hello again

Dear Dawn,

I feel that to chemo or not is her decision. My daughter, Lauren has been on Gem/Cis and 5-FU since September. I can't help but feel her chemo is what is making her feel good. She is lucky in that she experiences almost no nausea from her chemo. She gets anti-nausea meds in her i.v. and then keeps up with compazine for a few days to make sure she doesn't feel sick. She is tired and feels like she has the flu with body aches for a few days after treatment, then she is back and feels good for the most part. She does have pain and other symptoms at times, but she is tough and rarely complains. I know some people have horrible side effects from the chemo and if Lauren was sick more than well, I might question it as well. Whatever decision she makes, it is the right one for her. I am glad you will accept whatever she decides. Prayers are with both of you.

Love, -Pam

Hoping for a miracle for my daughter, Lauren.

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.

Pamela's Website

  • dawnl
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Re: Hello again

Thank you for your response.  It is comforting to hear that your Teddy passed on the chemo and that he didn't regret the decision. 

She is putting off the decision till after Jan 1.  If she decides not to do it, we will definitely get in touch with Hospice right away.   

We've been very busy in the memory making department with new, monthly get togethers with her family, a rented house/cabin up north with friends for NYE, a trip to Hawaii booked for January and one to Florida booked for February! 

I've been reading a lot of other stories and am so scared about how sick she may get as things progress and how long this will go on.  I'll use up all of my vacation and sick time before March between doctor appointments and our trips...and I know I won't want to work as she gets sicker.  I can't stand the thought of being away from her when she is in pain or scared or sad.  On one hand (and it feels absolutely horrible to say this) I hope it goes fast.  I don't want her to suffer and I have no idea how I will be able to handle it all.  On the other hand, I want every possible second that we can have together, no matter how or where those seconds are, which sounds pretty selfish.   

Also, does anyone else feel like a constant failure??  I can't do anything really to help her...I am borderline useless at work...I rarely have the energy to do or think about anything else besides how we are going to get through this...I feel like I am not there for friends and family even though they have all been so amazingly supportive for us...I try to always be supportive for her but I know I say stupid stuff sometimes...it feels like I just keep coming up short and letting people down.

  • Lainy
  • Lainy
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Re: Hello again

Dearest Dawn, sadly all that you are feeling is normal. Please try not to think so far ahead and just take each day at a time. When we were given the final prognosis on Teddy I  went in to my survival mode of all that mattered was  Teddy and his comfort. His only request to me was that I be strong and I got strength I didn't know was there actually drawing the will and the strength from him. Instead of being on the phone I did a detailed E mail to all family and friends on a daily basis. I didn't want to take up my time on the phone nor did I want to keep repeating everything.This saved me mentally and all my time was devoted to him.  None of us ever know how long anything will go on but rest assured Hospice will keep her comfortable. I believe that once her decision is made all will actaully become easier for you as then you will know what needs to be done. You are kind of in limbo until the decision is made. I think the trips are wonderful and something to really look forward too. When the time gets close for Hospice perhaps you can call on some family and friends to help out while you work.
You are NOT letting her down, she understands and the most important thing we can give as Caretakers is our love and caring and you are already doing that. If anything the patient feels they are failing us and that is another reason to try to be strong.
   You never know how strong you are until "strong" is the only choice you have!

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.
  • dawnl
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Re: Hello again

Lainy, thank you so much for the kind and supportive words. 

Pam, thank you too for sharing the flip side of the chemo v. no chemo choice.  I can't even imagine how difficult it is to watch your child fight this fight.  My heart goes out to you. 

Happiest of holidays to you both!  One day at a time...words to live by for sure.  Yesterday was a good day and so far so good today!

  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,488

Re: Hello again

Thanks Dawn. Prayers are being said for both of you. Don't ever feel like a failure. You are doing all you can for T. Most of all,  you are loving her. What more could someone ask for. Take care.

Love, -Pam

Hoping for a miracle for my daughter, Lauren.

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.

Pamela's Website

  • Registered: Fri, 08 Jan 2010
  • Posts: 832

Re: Hello again

Dawn:  To Chemo or not to chemo...in the end I WISH my husband had decided to not do the chemo.  He wanted so badly to continue living.  Funny thing was that we had already discussed 'no more chemo'. He was already down to 105lbs and I did not think he was strong enough.  However when they discovered another tumor (aggressive tumor that tripled in size in under 3 months) he decided to go with chemo.

They put him on 5-FU which for whatever reason was extremly hard on him.  He was sick for every week that he was on it (3 weeks).  They cancelled the 4 round, and by the next week he was in the hospital with failing kidneys.  He came home on thursday, started Hospice and was gone on Sunday 11/20/2011.

I can't help but think that he could have had a bit more time if he had not done the last chemo.  He did not have a 'quality' of life during or after that chemo. 

But, it's a personal choice one must make and it also depends on other factors.  If T is under 115lbs and is already in a weakened condition, then I personally would say NO.  But it T is at a healthy weight, has no other conditions, then it can't really hurt to try.  It may gain some time, but it may not.  In Tom's case I feel that it shortened his time here on earth.

Go with God,
Margaret

  • Registered: Fri, 12 May 2006
  • Posts: 8,165

Re: Hello again

Dawn....and remember that chemotherapy can always be stopped.  The patient does have control.
Hang in there - you are doing a fantastic job -.
All my best wishes,
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
  • Registered: Fri, 12 May 2006
  • Posts: 8,165

Re: Hello again

Margaret....you are bringing up a very important point (not unusual for your postings) in that quality of life over quantity of life should be taken in account.
I would love to hear what others think about this very important issue?
All my best wishes,
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
  • Lainy
  • Lainy
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Re: Hello again

After Teddy's Whipple we were told because of clean margins NO Chemo by 4 ONCS and Radiologists. 3 years later it returned where his deuodenum was and he had 25 radiation treatments to bring it down and then Cyber Knife. That bought him another 2 years. When we got the 'final prognosis' June 2010, the ONC told him he probably had until the following winter and he suggested Palliative Chemo. When Teddy heard the possible side effects he asked how long that would buy him and the ONC said perhaps another month. After thinking long and hard for about 3 days he decided on quality over an extra month. He was at Peace with the world and not afraid of the end. He passed at 78 years old. It may have been different if he was much younger but as I look back I don't question ANY decisions we made along the way. For us we did the right things.

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.