hope?
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Hello Lily
great to hear from you. Thank you very much. I have already started to check your chemo helping suggestions. Since her first folfox, she s lost 3-4 kilos, sleeping 16 hours a day, no appetite at all for the past 10 days… I hope your ideas will help.
Thank you for the warning. we had ordered PD-1/ PD-L1 too at the beginning. another good friend reminded to add them.
wishing you all the best.
Barish
Dear Barish, I am so sorry for all that your mother is going through, and you with her.
You sound like an excellent advocate for her from the start. I am relieved to hear she does not have mets and that you have already sent her tissue samples to Foundation One. You may want to call them asap and ask for the separate PD-1/PD-L1 testing (they do not include it with everything else – although they do include other immunotherapy indicators like MSI, TMB, and DNA MMR genes.) I hope she will be a candidate for targeted therapy or immunotherapy – hopefully also she will respond well to the chemo.
Some things we did during chemo that helped my dad tolerate it were: as much exercise as possible, lots of water, healthy plant-based diet with good protein and calories (lots of avocado, nuts, tahini, hemp seeds… vegetable juice or soup, lentils and chickpeas and beans, eggs, some fish…) Also ginger for nausea, I’ve read that Wisconsin Ginseng can help with fatigue, and we did probiotics with bifido, coriolus supplements, and vitamin D. when on folfiri chemo, we did turmeric also. Acupuncture helped him feel better, as did marijuana (vaping the pure plant only, and taking CBD oil orally. Also some people take THC oil orally too.) We are now on an immunotherapy plus ablation trial at the NIH so no more marijuana or supplements in case it might interact with the trial drugs. At any time, I feel de-stressing helps them – laughter, rest, being in nature, being with loved ones… whatever you can do to help her enjoy herself. And it’s so hard but you must take care of yourself too. Sending my hopes and wishes with love, Lili
Hello Mary
I m glad to find the foundation community. I m thoroughly reading everything on the site. And will share our experiment in order to assist the community.
Yes, we also had a PET scan, Toraks BT, MR. there is a tumor on the (?new) tissue which was replaced the resected lymp node area. And also there are a few dark areas in/on the liver which are considered metastase tumoric pieces.No far metastase observed.
on march 12 she had her left liver, gall bladder and lymph node (around the duct) resected. (attched is the current PET)
regards, Barish.
Hi Bgulmas,
I am sorry to hear about your mother’s diagnosis. It sounds like her doctors are watching her closely.
I have a question – when your mother’s CA 19-9 started rising, did she have scans that showed the cancer had reappeared? Sometimes it can take a few months before a recurrence is visible on a scan.
There are a lot of patient and caretaker resources available on the Cholangiocarcinoma Foundation website. There is also a good community of patients and caregivers on this discussion board, so please keep us updated and send any questions our way.
Best wishes that your mother is able to well tolerate the chemotherapy and that it does its job stabilizing the cancer.
Regards, Mary
Hello
I m son of a 68years old mother who never had any serious health issues, had never taken any regular drugs, no diabets, no high blood pressure.. On 20th of february 2018 I sent her for a regular blood test. her hands were itchy for 5-6 weeks and didnt stopped. results came out with high liver values. immedeately checked CA19-9, CEA, AFP, CA125 and all were over the limit. I Took her to more speciliased doctors and diagnosed Klatskin which is about 2-3 cm. No metastase.
On 12 march 2018 (3 weeks after first noticing) had a succesful partial liver resection. patology was pT2, N1. Lymph node were tumorised. it was also removed and they cleaned around as much as possible in a 9 hours surgery. Surgeons were one of the best of Turkey and I believe they did all they could. then after 6 weeks she d started adjuvant kemo of gemsar+kapesitapin. She had been in very good condition with no health complaints. CA19-9 dopped from 1200 to 100. Then 5 months after the resection, first week of august2018 CA19-9 leveled 220. since then the value is multiplying by 2 every 2weeks: 400>900>2500 latest. also Biluribin direct has started to raise (0,73). she has started FOLFOX treatment 2 days ago. We also obtained tissue samples from the surgery and posted to Foundation One/Boston for gene analysis 3 days ago.
Now she is in good condition but her skin is little yellowish. Today folfoks made! her a bit uncomfortable with no appetite.
wishing all the best to everyone.
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