January 29, 2019 at 8:10 pm #98065bglassModerator
This is disappointing news from your mother’s doctor. I am sorry the test results weren’t better. If your mother’s doctors are recommending she should not continue treatment, their attention will turn to alleviating her discomfort and maintaining her quality of life as best as they can.
With this news, your mother will find much comfort in the care and attention from you and other family and friends. Please stay in touch, our thoughts are with you in this difficult time.
Regards, MaryJanuary 28, 2019 at 9:03 pm #98058
After 3 cycles of Xeloda, the CA19/9 marker seems still elevated and even higher than earlier results. Doesn’t seem like the chemotherapy is working for mom. Sadly palliative care with morphine seems the only route forward now…
JohnyJanuary 25, 2019 at 4:44 pm #98053FernandaoliveiraParticipant
I am sorry to know about your mom’s difficulties, and hope she will get better soon.
My mom also took Xeloda (I told her story here: https://cholangiocarcinoma.org/db/topic/introduction-from-brazil/), and experienced light, but uncomfortable mucositis.
Oncology nutritionist prescribed zinc carnosin, l-glutamin, beta glucan and a supplement called Biointestil for digestive aid, and she felt a lot better.
Another useful tip is sodium bicarbonate. My mom used to dilute a little bit in water to wash her mouth after brushing her teeth.
Organic coconut oil for mouth washing was also very soothing for her, as well as softer tooth paste (she loves Georganics and Weleda ones).
All the best,
FernandaJanuary 25, 2019 at 7:47 am #98050
As always, thank you so much for your suggestions and references. Very helpful indeed. Will check with her oncologist on the nebulization option.
JohnyJanuary 24, 2019 at 1:23 pm #98049bglassModerator
l am sorry to hear your mother is feeling poorly and having difficulty sleeping. From what you describe, your mother’s doctors are trying to stay on top of treating her difficulties with coughing, nausea and mucositis. If their recommendations are not working well enough to keep your mother comfortable, you should push them to suggest other options. There are different medications used for nausea, for example, so if one does not work, another might be better. Some of the reputable websites for cancer patients mention that some, not all, find relief from coughing with humidifiers or medicines delivered through a nebulizer but only your mother’s doctors could assess whether something like this would help or not.
The U.K. has a good public health website for cancer patients. It has a lot of tips for dealing with cancer-related symptoms. Here is the link:
I hope this is helpful.
Regards, MaryJanuary 23, 2019 at 6:52 am #98035
Healthy New Year 2019 to all!!
It’s been 4+ months now since Mom was diagnosed with stage 4 cca (intrahepatic). Still fighting away and also passed behind her 77th birthday this week and with poise though under severe stress from all the nausea, coughing, mucositis, fatigue, and everything else that comes with this terrible disease and it’s treating medications.
Finished her 3rd Xeloda cycle (each with 2 wk@2g/day + 1 wk rest) today after gem/oxi didn’t budge the ca19/9 needle to her benefit. Her next marker tests are due next week….hoping for some positive news.
Seeking any advice around alleviating severe boughts of coughing and nausea and mucositis that she is experiencing since past 2-3 weeks… Impacting her sleep (sitting up helps while lying down aggravates all these) and thus increases her fatigue and pains. She continues to take suppressants (syrup) and a small dose morphine each day; and even did a regimen of wiselone (steroids) but the cough persists and severely.
Thanks in advance for any suggestions and experiences.
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