Husband, 55 y.o. diagnosed with cholangiocarcinoma
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Hi Jules,
Some of our patients have had radiation therapy for individual lymph nodes, also to alleviate pain and to slow down the cancer’s progression. I hope the therapy works well for your husband. Gem-cis is an effective chemo for cholangiocarcinoma, with many patients seeing either shrinkage of tumors or their cancer stabilized. The concern with mutation is why, with this cancer, it is always good to be thinking one step ahead as to what the next treatment will be if or when the current treatment loses effectiveness. From what you describe, your husband’s doctors are thinking about this, for example, by flagging an upcoming clinical trial.
A point that seems to come up a lot for patients is pain management. This is a concern that needs to be strongly pushed with doctors, to find the medications and other treatments that keep pain under control. There can be a lot of trial and error in figuring out the right mix and the right mix may change over time. I hate to see stories of patients having a pain medication prescribed by the oncologist that is not working, where patients feel they must soldier through.
I hope that your husband’s treatments go well and get the cancer back in check. Take care and regards, Mary
Thanks a lot, Mary.
Yesterday he had been to the cancer centre to check all the formalities of the treatment (we are in UK, and it will happen through NHS). He managed to talk again to the oncologist. She said the signs of cancer are indeed on the lymphnodes, so the radiotherapy is to reduce them. There might have on the back one, but she can’t be sure, and that thing on the pelvis is so small that she can’t even be certain what is it. But if they are cancer, the radiotherapy for those specific lymph nodes will also take care of that.
But she also said about how much this cancer can mutate, that she have few patients that survive for some years after chemo at this point my husband is, and that sadly most only survive for months…
He is under some painkillers and the moment and we got some nurses from the local hospice to talk to us about pain relief and stuff. Painkillers were working better a while ago, but not it isn’t being that effective anymore, what is not a surprise really, since he wasn’t being under any treatment against the cancer.
We really hope the radiotherapy will help on the cancer. And we are praying that the chemo will work as well (it will be Gem+Cis this time if I am not mistaken). We were informed a new trial for his cancer will open in few months, so hopefully we will have another option too.
Last time he didn’t have many side effects (the ones he had were totally bearable without any secondary medication), so I am expecting for the best results possible and that I can have my husband and our son can have his dad for some more good years.
Hi Jules,
Thank you for the update. Radiation is effective for many patients in relieving the pain from bone mets. Hopefully it will work its magic for your husband. It is important to be proactive in getting the medical help needed to manage pain, whether through radiation or other means. Some medical centers offer a palliative care practice that supports pain management for any patients whose illnesses may bring pain; this may be something to investigate in addition to whatever the oncologist recommends.
Your comment about the unreliability of CA 19-9 testing to flag recurrence is an important one. I saw a research study along the way that showed, for its sample of cholangiocarcinoma patients, that only about half saw their CA 19-9 rise in advance of recurrence, and this included some patients whose CA 19-9 was high at diagnosis. This is why doctors often tell patients not to get too focused on tumor marker numbers.
I hope the continued treatment stabilizes this recurrence, and that your husband feels better.
Take care and regards, Mary
Hi all, I am back, with not so good news.
Following scans of my husband showed he has metastasis. He has now 2 small nodules in his lung (one is less than 2 cm, the other is less than 1cm, close to each other), lots of enlarged lymphnodes, apparently he has a small metastasis on his pelvis on right side. Those metastasis were a surprise to us, since he has no symptoms related with the organ or that area.
But he is having a lot of pain on the hip (opposite side where the metastasis is), and that pain is increasing its levels considerably. Now the cause of that pain me and my husband understood different things: one understood it is a very enlarged lymphnode that has signs of cancer and it is near the backbone, and it is pressuring a nerve. The other understood that the backbone has signs of cancer, the nearest lymphnode is enlarged because of that and it is pressuring the nerve. Some days are slightly “less worse” than others in terms of pain, and that is not helping him to sleep at all.
Whoever understood it correctly, that wouldn’t change the treatment I guess. So, next week he will go through radiotherapy for the bones, and on following week he will go through chemo again. I really hope that the radiotherapy can help him be more mobile. It is heartbreaking seeing him in a lot of pain.
In other hand, apart from the small tumours in his lung and the condition of his bones and enlarged lymphnodes, all the rest of the organ and the other lung look good, his liver is fine, and no abnormalities in other organs were detected. So I am praying that this time the treatment will work and get rid of all cancer…
So… again, I am avoiding on reading stories of other people about this cancer because I know most of them are sad, I believe we were lucky enough last year being able to get the primary tumour removed, and I also know that each body is different and can react differently. Since the beggining the case of my husband seemed a bit atypical for what I read, and apart from the pain, when he is pain free and relaxed, looking at him you really can’t tell he has such a serious disease. He looks healthy, has no anemia, no weight loss and no loss of apetite as well (he actually gained some weight). So I am just focusing on his case now, since each of us are unique.
If you are reading this and you are new to the forum, I can tell you one thing: Don’t trust on the levels of Ca 19-9. If they are below the limit, it doesn’t mean you are cancer free!
Hi Jules,
Thank you for your update. It is great to hear how well your husband is doing, and how positively his doctors are viewing his progress. Your husband must be feeling relieved.
In no way am I meaning to dampen this welcome good news, but I do want to comment on surveillance after treatment. It is important to keep a sharp eye out for any signs of recurrence. This includes having periodic chest-abdomen-pelvis scans (typically, from what patients report on this board, four per year during the first two years) and bloodwork, as well as alerting his doctors if anything seems amiss.
I hope you will stay in touch. It is always nice to hear good news stories.
Regards, Mary
Hello Jules, mine is not a sad story, I have remained cancer free for 13 years with no recurrence , it is possible. Every case is different so keep the faith and keep doing what you are doing. Congratulations on your recent news and scan ! Remain positive and it is awesome that his cancer markers are trending down , do things he loves and laughter is great medicine so try to have some fun as often as possible, eat healthy and keep his weight up, he can win against this cancer
Hi all, came here to add a new chapter of our story. I confess I still don’t want to check the rest of the forum because I don’t want to read sad stories, but I want to bring some light to people who, just like us, is still fighting against cholangiocarcinoma.
Well, my husband is great! After my last post, the results of the tomography were clear. Nothing that the oncologist said we should worry about at that moment and that 38.5 Ca 19-9 wasn’t really something to worry about (just like Mary said above, he would worry if it had doubled or something). At the end of November he siad: “If cancer wasn’t a disease with chance to come back, I woudl say you are cured.”
Since then we didn’t have a new scan yet, but last month he had his blood collected for Ca 19-9 and it was the lowest that it ever had been since we found out the disease. It is 26! Yay!
His chemo ended at the end of October, and since then he didn’t have any medication at all. So I guess it is good news!
Hi Jules,
Welcome to our community and thank you for sharing your husband’s story.
What is striking to me is how frequently cholangiocarcinoma is symptomless and discovered accidentally when doctors investigate other complaints. Your husband is beyond lucky that his cancer was found in time to have surgery. The capecitabine (xeloda) he has taken after surgery was found in a British study called BILCAP to have positive results in prolonging survival for patients post resection.
It is essential to have close surveillance after surgery because this cancer can recur, and can do so without symptoms just like the original cancer. Doctors have different approaches to follow-up but they should take patient views into account. After my surgery, I had scans every three months for two years, plus monthly CA19-9 tests and quarterly metabolic panels and CBCs. If you have the CA19-9 monthly, it is easier to see if a movement is a blip or a trend. In my own case, I had both chemo and radiation after surgery. My CA19-9 drifted slowly upward during treatment, then drifted downward after. I am now -gratefully- three years past surgery. I still have my CA19-9 checked every two months plus now two scans each year, because with this cancer, there is always risk it will come back.
My doctors did not seem to worry about small movements in the CA19-9. One said he only worried when there was a “doubling or tripling.” Hopefully, in your husband’s case this is just a blip. Fingers crossed.
Please check out all the resources for patients and caregivers on the Cholangiocarcinoma Foundation website, and keep us posted on your husband’s progress.
Regards, Mary
Hi everyone, call me Jules. I am new to this forum.
In March this year my husband started to feel sick. We thought it was his diverticulitis again but ended up that the ultrasound found nothing in the intestines and found a tennis ball sized tumour on the left lobe of his liver. Back then all his blood tests were normal (or relatively normal), except by the levels of ferritine (it was above 3500) and Ca 19-9 (592). Liver enzymes were just a little bit above the normal level, what surprised the doctor. No hepatitis of any kind, no cirrhosis, no auto imune disease, no hemochromatosis. My husband doesn’t drink or smoke.
As the tumour was too big even if it was benign and as my husband was in a relatively good condition, the doctor decided to do the resection of the left lobe of his liver + gallbladder + 1 local lymphnode and do the biopsy of the tumour after the operation. The operation happened in the second half of April and the biopsy confirmed it was malignant and the lymph node had metastasis (pT2pN1).
He went through 8 cycles of chemotherapy (Xeloda), that ended last week. His Ca 19-9 levels were 52 in May and 31 in June. Today he went through tomography scan (we don’t know the results yet) and the blood tests from yesterday were all normal, except by Ca 19-9 (it should be lower than 37 and his level was 38.5).
Apart from the cancer, he has benign cysts on liver.
Now I don’t really know what to think about it. My husband has a good appearance at the moment. Xeloda doesn’t cause hair loss, so looking at him he really doesn’t look like he is fighting against a cancer, he isn’t pale or have jaundice at all, he even gained weight during his treatment. He is still having some side effects of the chemo. But I was expecting the Ca 19-9 would be a lot lower… especially because in June (2 months after the resection) it was lower than now. I know that 31 to 38.5 is not a big difference and it is only 1.5 above the limit but still… I read somewhere that benign liver cysts can raise the levels of Ca 19-9, so I really hope that’s the reason why it is not lower. But he said he now is feeling like the same he was in March…
Anyone has /had a similar story and had a happy end? I love my husband like crazy, we are married for only 2.5years and we have a 1.5 years baby. I try to stay positive as much as I can, but it breaks my heart seeing him down sometimes or seeing our baby wanting to be more with his dad and can’t because my husband is feeling unwell…
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