• From: Bothell, WA
  • Registered: Sat, 03 Mar 2012
  • Posts: 22

Topic: To chemo or not to chemo?

Yesterday, we received a very depressing news. My Mom had her CT scan done 3-months post- Y-90 treatment. Her disease has progressed or accdg to her Onco is worst...they were discussing about portal vein thrombosis.

My Mom was given 2 choices:
1. Another chemo treatment: Oxaliplatin and Xeloda for 6-9 weeks then CT scan
    The Onco told us that there is about 1:4 chances that this combination will help shrink the tumor/PVT. He's not really positive about this because the Gem/Cis, the first chemo combination that she had taken, didn't help shrink the tumor. It actually got a little bigger.

2. Hospice

My Mom feels and looks better now that she hasn't had chemo in over 8 months. Very minimal abdominal pain (on Oxycontin) and better appetite (on Megace).

My Mom agreed to try this chemo regimen and may start in 2 weeks (awaiting for  insurance approval).

Just this evening, I was talking to the Onco over the phone, I asked about the prognosis. He  told me that if my Mom doesn't respond to this (to which he's not optimistic),  she only has 4-10 months to live.

With this, I'm beginning to have 2nd thoughts about this chemo. I know my Mom, though, she tolerated Gem/Cis with minimal side effects might not tolerate this new chemo regimen. I don't want her to be miserable...But, I want her to exhaust all medical/alternative options there are available before anything...

I am not prepared for this...

Please add my Mom, Linda, in your prayers.

Thanks.

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

Re: To chemo or not to chemo?

Hi lbutiong,

I am sorry to hear about your Mom. My daughter, Lauren had Y-90 as well. It did not help her either. She developed a new 3 cm. tumor in about a month after the treatment. We were so hopeful for that treatment and so disappointed it didn't work. My daughter also had Gem/Cis as her first chemo.
She was recently on Oxaliplatin and Xeloda, but had an allergic reaction to the Oxaliplatin and can no longer receive it. She is now on Gemzar and Xeloda and still has tumor shrinkage. My point is that she will never give up trying whatever will or might help. I think it is up to each patient and their family to decide what is the right option for them. In our case, it is anything and everything there is to try until if and when the time comes and she says no more. I will add Linda to my prayers and I wish both of you all the best.

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

  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,215

Re: To chemo or not to chemo?

Dear Ibutiong, I am so sorry to read of your Mom's latest update. To chemo or not is one of the biggest questions on this Board and it is such a huge individual decision. My Teddy was 78 when we got his 6 month prognosis. He took 2 days to decide if he wanted Palliative Chemo or Home Hospice. He chose Home Hospice. He said he wanted quality not quantity, he felt he had been through 5 1/2 years of treatments and that was enough. We called in Home Hospice and they were wonderful. We got to take a trip back to Milwaukee at which time he wanted to say goodbye to family and friends and to thank his surgeon who bought him 5 years. He then enjoyed 4 months at home with lots of friends and family coming to see him daily. Again it is a very personal decision. One might say he did it his way. We never looked back and his decision was never regretted. I am wishing for your Mom to make her decision and whatever she decides is the right thing to do. You must be very strong as your strength will see you through. Sending a ton of love and hugs!

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: Akron, Ohio
  • Registered: Mon, 11 Apr 2011
  • Posts: 407

Re: To chemo or not to chemo?

I am so sorry to hear about your moms latest update. I will be sending prayers .
Lisa

Everyday is a gift

lisacraine's Website

  • From: Willow Grove, PA
  • Registered: Wed, 06 Apr 2011
  • Posts: 774

Re: To chemo or not to chemo?

Ibutiong:
My first treatments were gem/oxy. The oxy caused neuropathy but worked VERY well on the tumor. I had 6 treatments before my body couldnt handle the oxy anymore and they had to stop and the tumor was less than half the size. The (at the time) questionable lymph nodes appeared perfectly normal.
There are people on this board who have had complete cycles of oxy and had good results, with little to no side effects. Unfortunately, we cannot know ahead of time which way things will go.
My hopes and prayers are that each of us lives long enough to benefit from a medical breakthrough (which I believe is coming)!!!
Good luck to your mom and may she enjoy little to no side effects. Make sure she has mittens, thick socks and a scarf just in case.

Kris

Don't just have minutes in the day; have moments in time.
  • LindaR
  • Senior Member
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  • From: Downers Grove, IL USA
  • Registered: Fri, 02 Nov 2012
  • Posts: 63

Re: To chemo or not to chemo?

Kris, your posts are always so uplifting.  Each person's situation is different but my husband has also chosen to fight this disease as hard as he can in the hope that a new treatment will emerge that will make a huge difference.  This means dealing with side effects, staying informed about new drugs and treatments, and seeking second, third and fourth opinions as necessary.  Ibutiong, it sounds as though your mother wants to give this chemo regimen a try.  I wish her the very best.

  • From: Bothell, WA
  • Registered: Sat, 03 Mar 2012
  • Posts: 22

Re: To chemo or not to chemo?

Hi,

Thank you all for taking the time to share your insights. Everything is appreciated.

My Mom starts chemo next week. Kris, I'll make sure that she's kept warm (with mittens, thick socks and scarf).

God bless us all!

  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,215

Re: To chemo or not to chemo?

Ibutiong, Good for Mom! Wishing her all the best she is a true fighter and a courageous lady! Sending you both a ton of love and please keep us updated.

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.
  • Registered: Sat, 31 Jul 2010
  • Posts: 98

Re: To chemo or not to chemo?

my sister had the gem/cis chemo and that didnt help much. the side effects were minimal but after completing the cycle she had a new tumor and had to have another resection surger. the dr than tried the oxiliplatin/xeloda combo and although the side effects were difficult she has at least had some success by her ct scans not showing any tumor growth after 5 months since completinig the cycle. she is due for another ct scan in feb.  it is a difficult decision as each person reacts to the oxiliplatin differently. these decisions are never easy. i wish you all the best.