jorritvanniekerk
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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
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
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
