May 10, 2019 at 9:43 pm #98548
I was saddened to hear that your mother’s health has worsened.
It is understandable that, at this moment, you mentioned being worried that your mother’s declining health might be partly due to treatment choices you helped her to make. But please do not be so hard on yourself. Your advice to pursue a trial was similar to choices made by many others in the same situation, often because caregivers appreciate that trial drugs may have fewer side effects which is an important consideration for preserving quality of life. And as you mention, second-line chemos bring their own risks that must be considered. The speed at which a cancer progresses may outpace any treatment chosen. From what you describe, you have supported your mother tremendously, as much as anyone could, with loving, thoughtful care and advice.
The next days may be difficult and heart-breaking, but please know this community has you and your mother, and your family, in our thoughts and prayers. Your continued love and care for your mother will bring her much peace and comfort.
Take care, regards, MaryMay 10, 2019 at 2:55 pm #98545
Dear ones, we are at the end of the journey. Things have only gotten worse since my last post in March. My mother has been waiting for an evaluation until April 9th. Here the doctor advised starting therapy with folfiri, as my mother had pains near the liver. I asked him if he could wait a week or 10 days for my mother to be able to re-enter a trial in another hospital, and he said that it would be better to try the trial, also because the tac showed an increase in liver metastases and lungs. We waited, but mother was not suitable for the trial, her condition quickly deteriorated, and now she is under unconscious morphine with a few days of life. I will have remorse for the rest of my days for not having made her do the folfiri, even if everything I did was always communicated to the oncologist, and I know that a second line does not give great results. My heart is broken, but I thank you all and wish you the bestMarch 15, 2019 at 3:56 pm #98305
I am sorry to learn that your mother is experiencing some difficulties related to treatment. From what you describe, the gem-cis cycles have not produced the results hoped for, and the doctor has suspended chemo for now to address her leg pain. It sounds like there is not good communication from the doctor since your mother seems to have been left without a clear plan forward. Has the doctor given an opinion as to whether it is time to give up on gem-cis (e.g., switch to another chemo)? Has he discussed second-line chemo options? Are there concerns that your mother cannot tolerate more chemo?
Clinical trials are an option worth looking into. Some trials require the patient to have first tried a standard-of-care treatment, and some require patients to have a wash-out period (no treatment) for a specified number of weeks prior to starting. Usually there is contact information given for clinical trials, so you could call and see if the trials you identified would be possibilities for your mother.
It seems from your description, the most important next effort is to push hard that the doctor gives clear information to guide your mother’s next steps. Is the doctor expert with this rare cancer? If he is, then he should be giving more information on how he sees your mother’s treatment proceeding. If not, can your mother be referred to a doctor more specialized in cholangiocarcinoma?
I hope your mother’s pain is reduced and she can proceed with treatment. Let us know how she is doing and if you get clearer advice from her doctor.
Regards, MaryMarch 14, 2019 at 7:04 am #98302
Hello everyone, I ask a kind advice to those who have more experience than me, my mom has reached, more than a month ago, the 4 cycles of cis + gem (I think half of the complete cycle) and the oncologist has done tac and rmn for treatment evaluation. The nodules in the lungs did not increase in number but were enlarged by 2/4 mm, and it also appears that the largest lesion to the liver is increased by a few mm. The CA19-9 went back to 1400. My mom is now on stand-by because a severe pain in her right leg started (she is forced to take opiates), it could be a hernia, bone scintigraphy has not metastasized, she should do soon a lumbar resonance. We are waiting for this exam and the orthopedist, but given the times it could happen to stay still for at least a month before hearing the opinion of the orthopedist and perhaps resume cis + gem.
I understand that therapy is not having any effect on the slow but continuous growth of metastases, would anyone have any advice for me? Is it better to wait? I have made contact with other centers to try to see if there is the possibility of entering a clinical trial with Keytruda, or Nivolumab + Ipilimumab, or some other new drug, do you think it’s too early? Can we say that it is useless to continue with gem + cis? Our oncologist is a very kind and helpful person, but in his hospital they do not do clinical trials, and I do not understand what his treatment plan is, he seems very expectant. What would you do in my place? Many thanks to all.January 13, 2019 at 3:57 pm #98003
Doing one’s research is important for this rare cancer. I hope you have also had a chance to look through the patient and caregiver resources on the Cholangiocarcinoma Foundation website.
Cholangiocarcinoma is unpredictable. Some patients do discover their cancer to be slow-moving, but in other cases it can be more aggressive. It is important to watch its evolution carefully and alert your doctors if something new is worrying your mother.
Regards, MaryJanuary 13, 2019 at 3:07 pm #98002
Good morning Bglass, thank you very much for your reply. I am looking for other opinions to prepare myself in advance, I have seen that it is a good strategy to anticipate the times in this little known disease, even if I realize that we should work full time on this disease to get a good idea. Every time I read this very useful site, I always find new things. The chemo gem + cis for now is well tolerated (we are only at the sixth infusion), the ca19-9 at the beginning was 1200, after two treatments 1500, now under 1000, seems to lower. The other blood tests are ok, no neuropathy, vomiting, and other things, just fatigue the day after chemo, radiological examinations will be done in about a month at the end of third month. Unfortunately, no genetic tests have been done, so to enter any trial I think we should do a biopsy. Some small metastases to the lungs were from the beginning, they grew a few millimeters but then remained stable until November, now I do not know. An oncologist with whom I spoke said that even in the absence of treatment the disease did not seem to move very fast, is this normal in your opinion?January 13, 2019 at 1:51 pm #98001
It is nice to hear from you, please don’t worry about language – your English is very good.
We are not doctors here, but can suggest questions you might consider asking as part of a second opinion.
It was not clear from what you wrote why you are seeking a second opinion at this point. Has the gem-cis stopped working? In other words, has your mother’s cancer started progressing despite the gem-cis? Is your mother tolerating the gem-cis well?
At present is the cancer evident only in your mother’s liver, or is it also seen elsewhere?
The reason I am asking this is when cholangiocarcinoma is stable (not worsening) under a treatment and the treatment is well tolerated, a doctor may wonder why the patient is looking to change. Sometimes the reason may be to figure out future options, so the patient has a plan if the current treatment stops working.
When there is little information about doctors outside the U.S. who are expert in cholangiocarcinoma, one way to look for them is to search medical journal studies about cholangiocarcinoma from authors from your country. If you look at enough articles, you will start to see repitition of doctor and hospital names which will give some clues about where to find the experts.
Your list contains a lot of different treatment ideas. Has your mother had genomic testing to see if she has specific genetic defects present in her cancer for which there may be a targeted treatment available? In the U.S., most targeted treatments are available through trials. Both TAS-120 and Keytruda are treatments tied to specific genomic defects.
I hope your mother is feeling well and still enjoying a good quality of life despite her cancer diagnosis. She is lucky to have a child so determined to find her the best possible care and treatment.
Regards, MaryJanuary 13, 2019 at 12:23 pm #98000
Dear friends, I’ve been following you for a while, but given my modest English I’ve never posted before. My 72-year-old mother was diagnosed with papillary carcinoma in August 2017, had DCP operation (positive retroperitoneal margin and 40% positive lymph nodes) and 6 months of adjuvant (well tolerated) gemcitabine. In May 2018 they noticed some injuries to the lungs (at most 8 mm, concerning the tac made in the first hospitalization, probably there were already but they were not entirely clear and they were smaller). The liver seemed clean. The oncologist asked if we preferred to wait or leave with capecitabine right away, my mother preferred to wait. From August / September 2018 the markers have risen (CA19-9 to 1200), and an MRI (which finally made her do, since the tc had never cleared things well) has shown 3 lesions to the liver (20 , 17 and 11 mm). So in November he started gem / cis and is continuing (he is at the sixth infusion). Apart from the initial jaundice, she is asymptomatic. It is taking many integrations, we went to a center to evaluate a second-line experimental immunotherapy protocol. Previously they had ruled out the possibility of radiotherapy. In two days I will have to go for another opinion from a specialist in colangio, and I would like to ask you some advice on the questions to ask him; I scored a few points: – trial TAS120, – Keytruda, – cyramza / irinotecan / abraxane – Adoptive cellular therapy, – sirt – cyberknife – CRM197 – newcastle virus – metronomic chemotherapy with cyclophosphamide + LDN + metformin + melatonin + curcumin + lipoic acid. Does anyone have any ideas? I find very few resources and experiences in Italy, I do not know if it depends on my inexperience, but I have passed many doctors and centers without major results. Thank you so much and good luck to everyone on this hard trip.
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