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(4 replies, posted in General Discussion)

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

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(4 replies, posted in General Discussion)

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

3

(5 replies, posted in General Discussion)

Dear notdoneyet,

Your son is not the only one with such high numbers. My mom was diagnosed in June and doctors also said no to surgery. Her CA 19.9 was up to 147.000. My mom is on cisplatin and gemcitabine and her levels dropped to 1200 at the moment. She is doing fine at the moment and scans in October showed shrinkage. Like you said I also can't believe my mom is as ill as the scans show as she is doing so good now. I hope deeply the rise of the CA19.9 doesn't mean tumor growth, i guess you have to wait for another scan to see..
Hoping that Dr. Kato will bring some good news.

Jorrit

4

(7 replies, posted in General Discussion)

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

Hi there,

My mom is having gemzar/cisplatin at the moment and the side effects are relatively mild. After 3 rounds she still has her hair altough it is a little less. But you can hardly see it.
Especially the second and third day after infusion my mom suffers a lot from nausea (even with meds) and loss of apetite. And I think tiredness is a symptom that most people will experience. But like i said at the moment the side effects are relatively mild and i hope they'll continue this way.

I hope they will be mild as well for your mom.
Keep hope and be strong for her.

JvN

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(7 replies, posted in General Discussion)

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