• From: Amsterdam
  • Registered: Thu, 13 Sep 2012
  • Posts: 6

Topic: My mom

Dear members,

First of all i'd like to introduce myself and my family. My lovely mother from 62 is diagnosed with CC since 14 june 2012. She is happely married with my dad from 64 and i am her only son from 24.  From being a very strong healthy woman she suddenly became a patient with very little complaints but with an unresectable tumor and a very bad life expectancy. The disease has spread throughout the liver with multiple spots and a positive lymphe node. There was even a spot on her pancreas. She decided to start the battle and is now on chemotherapy (gemzar & cisplatin). I admire her courage, strength and her ongoing happiness.

At the moment the chemo seems to work as her CA 19-9 dropped from an extremely high 140.000 just prior to the chemo, to 23.000 after 3 rounds of chemo. She just got her scan today and we're hoping to get some positive news next week and i hope we'll get some more time.

The doctors said that after 6 rounds of gemzar & cisplatin they stop the chemotherapy. Does this mean end of story? Or are there any other chemotherapies she can try, ofcourse being of chemotherapy for a while to let her body recover and being in a good enough condition.

And what about yttrium embolisation or TACE (trans arterial chemo embolisation) ? I guess it's less harmfull for your body than systemic therapy? What makes a person eligible for TACE or Yttrium since the doctors keep telling us, my mom isn't.

Hope and strength for all,

Jorrit

Never give up, your miracle is on its way

Never give up, your miracle is on its way
  • Lainy
  • Lainy
  • Moderator
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,199

Re: My mom

Dear Jorrit, welcome to our extraordinary family but sorry you had to find us. You have a very remarkable mother, strong, courageous and a great attitude. I am not that versed on Chemo as my husband did not have it but I know there are other cominations out there and other things that can be tried. Not sure how your system works on allowing 2nd opinions but we usually feel it is good at times to seek out another opinion. I know others will be along to answer your chemo questions but I wanted to welcome you and say you have come to the right place!

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: Fri, 15 Oct 2010
  • Posts: 1,733

Re: My mom

Hi,
It is good to hear that your mother is responding to the systemic chemotherapy.
Six cycles of the Gem/CIS  by all means Is not the end of the chemotherapy.
I think the oncologist  will  make the appropreiate treatment plans to follow after the chemotherapy base on the CT scan results after the 6 cycles .
Normally, as a patient myself of this disease for 39 months, I am 63 years old by the way,and I have learned that if the tumors contained  in the liver and not spread to other parts of the body,TACE  or Radioembo can be of choices to delay the progression of the disease,buying time and quality of life. But if it had metastized to other parts of the body, as just one lymph node and one in the pancrease. It may not qualified for such interventional radiological palliative treatment. Get a 2 nd opinion on the radiology treatment to see what they will say.
Keep in touch and
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.

4 Reply by marions (edited by marions Tue, 18 Sep 2012 18:36:39)

  • Registered: Fri, 12 May 2006
  • Posts: 8,157

Re: My mom

Jorrit...I would like to follow Lainy and Percy in welcoming you to our site.  Your Mom's response to treatment is quite remarkable.  I congratulate her on her feisty spirit and positive attitude. 
Numerous, other, agents (most in combination) are available for this treatment, but that will be something the physician will take under consideration.  Much depends on the overall state of your Mom's health.
I wish for continuous success and am looking forward to hearing of the upcoming scan results. 
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
  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,487

Re: My mom

Hi Jorrit,

Welcome to this site, but I am sorry to hear about your mother. My daughter, Lauren has CC. She was on Gem/Cis and 5-FU every other week from Sept. 2011 to May 2012. Her doctor discontinued the Cisplatin earlier than the other two because he said it can cause kidney damage. She is now on Oxaliplatin and an oral chemo called Xeloda. Maybe your mother's doctors only want her on that chemo for six rounds because it is hard on blood counts. Lauren had a hard time keeping her platelets high enough and missed a few treatments. All I know is that will not be the end for our mother. There are many other options. Lauren also had what you call yttrium emolization or Y90 in May of this year. I wish all the best for your mother. Hope to hear from you again.

-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

  • From: Amsterdam
  • Registered: Thu, 13 Sep 2012
  • Posts: 6

Re: My mom

Hi there,

Yesterday we got the scan results. All tumors showed shrinkage!
The tumors in the liver are about 1/4 smaller and the spot on the pancreas is hardly detectable. Also the lymphe node is smaller than before.
But, they found a spot on the right diaphragm. They do not know if it is metastatic disease or just something else that has nothing to do with it. Weird isn't it? Just because all the other tumors showed shrinkage.

My mom is taking one week off extra. Since she wants to enjoy the good news to the fullest. Next week she'll start the next 3 to 5 rounds of chemo. The doctors are planning to prolong this chemo regimen, as she is responding so well to thiS combination. After 6 rounds they'll evaluate again.
The best thing maybe is that my mom is feeling good and comfortable again.

Thanks for all the support and answers.

Love

Never give up, your miracle is on its way
  • Lainy
  • Lainy
  • Moderator
  • Offline
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,199

Re: My mom

WOW! That is really great news about your Mom, you know how we love the "shrinkage" word. Here is wishing for the next scan to be as good as this one. I am so glad that your Mom is also feeling so well. ENJOY!

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: Fri, 12 May 2006
  • Posts: 8,157

Re: My mom

Jorrit....another "good news" report.  Congratulations.  This week provides a  welcome break from the treatments and will allow for a good week of rest and rejuvenation.  Enjoy.
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