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

Topic: scan results

Dear members,

It has been a while since I posted. My mom was diagnosed with cholangiocarcinoma spread throughout the liver and lymphe node in June 2012 and started in July with Gemcitabine/Cisplatinum. She just finished 8 rounds of chemo without major complications. She had an enourmous drop of CA19.9 from over 140.000 to 158. her scan in October showed shrinkage of all tumours. Her scan results from January just came in and showed shrinkage BUT 3 new spots appeared. 2 in the liver and 1 in her upper right lung. This was not at all what we had expected since the CA19.9 was decreasing and she was just feeling better and better. Since the tumour broke through the chemo it has become useless and there is not much that he can do for us right now, the doctor said. There is an scan appoinment in April to how the new spots grow. All documents have been sent to an other clinic to hear their view on this case. For now it feels just so frustrating that we cannot do anything to fight this cancer.

Is there anyone with some good advice or recommendations that we can follow?

thank you very much and stay strong.

Jorrit

Never give up, your miracle is on its way

2 Reply by marions (edited by marions Wed, 06 Feb 2013 03:15:14)

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

Re: scan results

Jorrit....Hello, and welcome back and so sorry to hear the news.
I am not a doctor therefore; everything mentioned is based on my personal experience that of others, and the training received.

For those that have reached maximum benefit, a different chemo regiment may show positive response.
As far as I know Stereotactic Radiation is less used in Europe than in the US however; there might be a radiation oncologist you could consult with.  The type of radiation is basically the same but might have different names such as:  Axesse, CyberKnife, Gamma Knife, Novalis, Primatom, Synergy, X-Knife, TomoTherapy or Trilogy.

If indeed the lung nodule is metastases then I would question as to whether it needs to be treated and what the treatment consists of. 
You may also want to use the search function and peruse some of our older postings re:   And, of course, I hope for others to chime in also.

Try to stay hopeful and continue to search out other options.

Good luck and tons of good wishes are heading your way,
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
  • From: Amsterdam
  • Registered: Thu, 13 Sep 2012
  • Posts: 6

Re: scan results

Dear Marion,

Thank you for your advice.
We consulted an intervention radiologist and radiation oncologist and they said no to further local treatment. Here in The Netherlands they are indeed not a fan of radiation. Also the doctors here don't really have other options than giving the standard cocktail Gemcitabine/Cisplatinum.
Now we are seeking for an 2d/3rd opinion about an other chemotherapy but for now my mom just really enjoys to be off chemo for a while.

The nodules in the long is now there without any complaints and only needs to be treated when it will give complaints the doctors said.

We keep on searching for other options.

Stay strong,

Jorrit

Never give up, your miracle is on its way
  • Registered: Fri, 12 May 2006
  • Posts: 8,165

Re: scan results

Jorrit....our Percy has provided us with a great link regarding possible treatments
http://www.cholangiocarcinoma.org/punbb … hp?id=7843 possibly this may be of help to you.
In the meantime your Mom's break from chemo will allow her to regain strenght both, emotionally and physically.  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
  • From: Willow Grove, PA
  • Registered: Wed, 06 Apr 2011
  • Posts: 773

Re: scan results

Morris: so sorry to hear about your moms treatment. I hope you can find some doctors that have enough expertise to try something else.
If you CAN find one to discuss radiation or chemo mobilization, that would be great. At least you can discuss it. I was a recipient of stereotactic radiation and while it did not kill the cancer cells, it has made them appear much more "normal"! I believe it will prolong my life for quite a while. So far it's been 7 months of "quiet" cells.
Please try to find other doctors that will look at alternate treatments.
Good luck.

Kris

Don't just have minutes in the day; have moments in time.