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  • in reply to: Husband, 55 y.o. diagnosed with cholangiocarcinoma #99591

    Hello everyone

    I don’t post here for 2 months. A lot happened since then…

    Firstly, “Candy”, I am sorry to hear about both your husbands. I really hope that your husband now is better and that new treatments will help him…


    My husband started the FOLFOX, his morphine dosage was increased and other painkillers as well. Unlikely the prediction of the oncologist, my husband was here during Christmas and New Year. In December he had signed some papers to join a clinical trial that is about to open real soon. On the same day the professor and his group decided on doing this research they saw my husband. He was the first candidate.

    That filled us with hope at that moment, but unfortunately this terrible disease didn’t stop, and that plus the side effects of the morphine transformed my husband into someone else. We would like so much to have been able to join that trial, if not to help my husband, to help other patients in the future.

    My husband passed away last Saturday. That is the worst pain I had ever felt in my life, especially having a 2.5 years old kid that since he was 9 months old had his routine changed drastically because of this disease and now he doesn’t want to eat.

    It was a battle that started on late March 2018 and ended in January 2020. As he had the “fast form” of the disease, I am extremely grateful for being able to have him by our side for so long, and I love him more than ever for having fought like that for us.

    in reply to: Husband, 55 y.o. diagnosed with cholangiocarcinoma #99327

    Hello again

    My husband had the radio on Tuesday. Yesterday seemed his pain was better, but he was more tired. Hopefully this is just effects of the radio. They gave morphine to him as well.

    His oncologist said she will do everything to make his chemo starts in less than 2 weeks (Folfox) and depending of how he is by the time it starts, she will want him to be hospitalized at the start. If it works, then he will be in that chemo until it stops working, and in 2 months time he can go to that trial.

    Now… if the Folfox chemo doesn’t work, she said that he will be luck if he can make it to Christmas and the New Year…

    Ah well…

    • This reply was modified 8 months, 4 weeks ago by Josmb.
    in reply to: Husband, 55 y.o. diagnosed with cholangiocarcinoma #99310

    Hello Mary

    I will look the forum about the Folfox. My husband went to the hospital for his radiotherapy (one session only, in lots of parts of his body) and probably he will have an idea if the oncologist managed to get a trial for him (then he has to decide if he will go for the trial ou Folfox). He is concerned that Folfox would give him even more side effects than Gem+Cis (Capecitebine gave him nearly none side effect, or at least none that would make him feel so bad).

    I know that (unless science have a big advance in a short period of time or if a “miracle” happens) one day I would lose him to cholangiocarcinoma, but we were expecting it wouldn’t be any soon and that the chemo could stabilize it.

    He hasn’t tried morphine yet for the pain. Right now he is under Codeine, Paracetamol and Ibuprofen. I kept asking him to ask for stronger painkillers so he can at least lay properly in bed and have a good rest (or just feel better, be more mobile, enjoy life better with me and our kid), but he hasn’t done it yet (not sure if he is afraid of addiction or what…), so I really hope that the radiotherapy of today will help him with the pain.

    I am not sure if here in UK immunotherapy is available, any idea if it has good effects?

    Thank you


    Edit: He just messaged me. Folfox will start in 2 weeks at most and the trial will be available for him in 2 months.

    • This reply was modified 8 months, 4 weeks ago by Josmb.
    in reply to: Husband, 55 y.o. diagnosed with cholangiocarcinoma #99272

    Hi all


    We have been to the appointment today. Well, we hoped for better news…


    He has a new tumour in his lung (2cm), one in the liver (4cm), lymphnodes grew millimeters, bones got worse. It has spread. So he won’t go for 8th cycle of Gem+Cis. He will have a radiotherapy session to improve the pain. About chemo, the oncologist will try to get a new trial for him, or he will go through FOLFOX (she mentioned that usually patients are not responsive to that chemo though…).


    So, that’s it. Let’s see…

    in reply to: Husband, 55 y.o. diagnosed with cholangiocarcinoma #99224

    Hello Mary


    Thanks for your message. My husband already had  a dosage adjustement when the scan showed blood clots (I am not sure how much it was reduced, my husband thinks it was 50%, although I believe he misunderstood the numbers, but it was reduced for sure). And this is what is worrying me lots, not sure if it can be reduced even more..

    in reply to: Husband, 55 y.o. diagnosed with cholangiocarcinoma #99220

    Hi everyone

    My husband is now on the rest week of the 7th cycle, and he has MRI and CT scan on Tuesday. He is now taking a lot longer to recover. At the start of the Gem+Cis chemo he was fine during the rest week, then after 3rd cycle he started to go back to his “normal” in the middle of the rest week. On 6th cycle he only started to feel better on tuesday evening before the chemo (that was on Thursday).

    During the appointment right before the 7th cycle the oncologist said that at this point of the chemo all the symptoms that my husband mentioned is very common and many patients take 2 weeks rest instead of one. He chose to not take an extra week to recover at that moment and he started the 7th cycle on the day it was supposed to be, but now he probably will need that extra week before the 8th cycle because he believes his body is very close to the limit it can take from the chemo.

    He is very tired, very weak, feet and legs are swollen and lots of pain (but it was told him it can all be the cumulative effect of the chemo and not the disease). He is struggling to do anything. Simple things like preparing his breakfast, walking inside home, getting dressed and even having a shower exhaust him (and make the pains worse), so I am helping him as much as I can. He said that he is getting a bit better now day by day during the rest week but still far from being great.

    He is still under anti coagulant shots for the blood clots in the lungs (hopefully it won’t be needed anymore). He was having some bleeding through his nose on the last 2 days. (today it was better, although yesterday I didn’t give him the anticoagulant shot).

    All his blood tests were ok last time (on 16th October).

    So let’s see what the scans on tuesday will show and hoping for the best. After 8th cycle we hope he can get some radio or something else (we are really afraid to interrupt totally the treatment and the disease mutate to something resistant to chemo).

    Thanks for reading

    in reply to: Husband, 55 y.o. diagnosed with cholangiocarcinoma #99057

    Hello, it is me again.

    Well, we had been with the oncologist nearly 2 weeks ago.

    -Blood clots: she said it indeed is very common, and that they are small and not so many. She told us to do the anticoagulant medication (shots, he is hating it!) and to not worry much about it. Last time I wrote here was the last time he needed platelet transfusion. He is now on the second week of the 5th cycle (thursday starts the pause week) and on last blood test his platelets were good (above 300-something if I remember well).  His hemoglobin was still below the level but still higher than last time, so no transfusion needed.

    -The scan: she confirmed that the lymphnodes are smaller, the 2 nodules in the lungs are also smaller. It seems that it even had effect in the bones.

    The bit that made us a little bit worried was that she mentioned that sometimes the disease is not visible on the scan at first, but then it become visible after the start of the treatment, and it shows up in the scan as something “scarred” and not as a new tumour without treatment. In a way or other seems the chemo worked on it as well, but then it means he had more methastasis than we thought he had. She mentioned there was something on right side of the liver that she couldn’t confirm 100% if that was also some “scar” like that or what, and to keep na eye on it as well.

    So, chemo continues, but apparently in a lower dosage due to the clots. I had understood she would ask another scan to be done by the end of the 6th cycle, but my husband don’t remember she mentioning it (now I don’t know if he doesn’t remember that or if it was me that misunderstood it, since I still have trouble with understanding some different accents around here).

    When he stopped taking the Ibuprofen (because of that information we saw that this medication could interfere with platelets) he was in a LOT of pain, so the doctor recommented more steroids to help with that (didn’t help as much as the previous painkiller), but now on second week of this cycle he is not taking those steroids and his pain is a lot lower (he is still not taking the Ibuprofen).

    What is making my husband more worried too is that he is having indigestion (he didn’t have it since last year after his operation). So probably he is worrying that is that thing on his right side of the liver messing up with his digestion (or I don’t know if this is a common side effect of the chemo and only just now he is having that like this). Also, his tiredness was a bit extreme yesterday and he is still tired today, although I checked his blood pressure yesterday and it was low (it was around 100/680, and his “normal” with the medicine is around 130/90, since he is a big man who always had high blood pressure). I am not surprised that he was feeling like he was (when my blood pressure gets to that level I don’t feel well), so somehow the chemo is dropping his blood pressure again.

    That and all the worries of people who deal with this disease (plus the fact he is always worrying about something even when something is fine) and having a 2 years old kid on “terrible two” and not being unable to help me as much as he used to do before makes him feel down sometimes.

    I think that’s all for now. Thanks for reading again and for all the support!

    in reply to: Husband, 55 y.o. diagnosed with cholangiocarcinoma #99005

    Hello all. Thanks everyone for the supportive messages. It really helps to read experiences from who already been through similar situations. And I hope the scans of your mother are good, Hanna.

    We have some updates (some of them are good, some of them not so good):

    Since last I wrote here, quite a few things changed (we will only have an exact idea about everything on next wednesday, when we will have an appointment with the oncologist).

    My husband is now on the 4th cycle. On 3rd one on his pause week he was feeling good. Apart from some tiredness that is common to those who goes and who went through chemo, he nearly was again my dear husband from before this terrible disease. The pains reduced a lot, he mentioned he was able to take less painkillers. Before the 4th cycle he talked shortly with the oncologist and she said she was happy with his progress.

    This 4th cycle was harder than the others. He was really tired and weak, nearly as tired as his first cycle when he was still with the side effects of radio. Chemo happens on Thursday, and he usually start feeling tired on Monday or so. On first week it started on Saturday (and he felt tired pretty much until the following Thursday) and on second week on Sunday evening (a bit closer to his “normal”). He was feeling down saying it is really hard among 3 weeks, only have few days feeling well.

    Around 9 days ago he went through the scan, and we only would know the results on next wednesday, but on last wednesday we got a phonecall from the hospital where the scan was done (wasn’t the same were he has his treatment, simply because it is closer) asking him to go there urgently because he has blot clots in his lungs. They also were worried about the cancer, but seems they didn’t check (or they just didn’t have access) to previous scans from him, so they thought the cancer (and some other things my husband have already for many many years like liver cysts and small calcifications in lungs) was something new.

    Seems they contacted the other hospital about it later and they compared shortly this scan with the previous and seems that GemCis chemo is having effect on the tumours of the lungs and lymphnodes, but apparently not on the bones (we were aware that it wouldn’t work on bones and that best for it is radio), so it is the good part of the news about him.

    The not so good ones are about those blood clots, and, apart from the fact that in all other previous blood tests he had everything was normal, now his platelets were really low (what really doesn’t help to who need anticoagulant shots, that in theory it would be me who would do these shots on him at home – I had done lots on myself when I had pulmonary embolism some years ago and I also used to do insulin shots on my father). So, the doctors of this hospital contacted his oncologist and she said that now he would need to go daily to this hospital to do a blood test, check his platelets and see if he only would need the anticoagulant or a platelet transfusion first and then the medication (he had a transfusion on Wednesday, he didn’t need on Thursday and Friday. Today we don’t know yet. Also, seems his red blood cells are low (not sure how low, it was a nurse who mentioned to him), what would explain why he was so much more tired this time.

    The oncologist said she believes that it was the chemo messing about with the platelets and the blood clots, and not the disease.

    Looking at him, if wasn’t by the tiredness, you wouldn’t tell he is going through all of that. He doesn’t look sick, his hair barely fell at all, he has his appetite (sometimes he even steals my ice cream!) and sometimes he just don’t eat more because he says it can be exausting.

    Well, it is nice to know that the chemo is working on the disease, but sad about these other side effects of the chemo. In one of the times my husband were at the hospital for the treatment a doctor of the same group of his oncologist mentioned he was in the max dosage of the chemo. So now we will see what the specialist will say on next appointment. Really hoping we can control the clots and his blood test will go back to normal.


    Thanks for reading

    Update: he will need platelet transfusion today

    • This reply was modified 11 months, 2 weeks ago by Josmb.
    in reply to: Husband, 55 y.o. diagnosed with cholangiocarcinoma #98917

    Hi all again

    Thanks Hannah for the link. As soon as my husband gets in a better mood I will talk to him about it. Sorry for the late reply…

    Just giving some news: ups and downs here. His biggest complain about side effects are about fatigue (and the heat isn’t helping at all). He still feel the pains here and there, sometimes worse than others. He mentioned that now he is being able to take less painkiller (not sure if he should do that or not, but at the moment I don’t feel like telling him that because I don’t want to make him upset). Sometimes he complains part of the abdominal pain is due to the constipation the steroids cause.

    Seems his side effects shifted (and keep shifting) which days of the week it happens (that reminded me about your mother, Hannah). The chemo happens on Thursdays.  At the beginning he used to feel good right after and on Friday and worst days were weekend. Then it shifted to Sunday and monday, then on tuesday he started feeling better. There was a week that he started feeling bad on monday and felt bad pretty much until thursday, and got better after the chemo. He was ok until yesterday (sunday) and at the moment he is not feeling great, especially after he tried to carry a box that was heavier than he thought it was, now back pain hit him again. And of course the moods are  not the best with all of this…

    Scan will be done on mid August and then at the end of next month we will know how he will be. At the moment he was wishing to go back on capecitebine since he was feeling a lot better with that chemo (he says he feels useless now) and he read somewhere that seems capecitebine is more effective to metastasis on lymphnodes than Gem Cis, I dunno…


    I know I am also psychologically exhausted with that, the fear the treatment is not going well really scares me.. Also, being a mother of a 2 y.o. kid and having little help from husband (because he can’t help me as much as he used too) doesn’t help much either…

    in reply to: Husband, 55 y.o. diagnosed with cholangiocarcinoma #98768

    Hi all

    After my last post my husband had the second chemo infusion of the first cycle. This time he reacted better, probably because now he is taking the medicines for the side effects correctly. He didn’t have anemia or any abnormality on the blood tests, what was good. When he left home for the chemo on last thursday. Of course he is not 100% great, he still have nausea and he is very tired, but now he is being able to eat at least. Few portions and slow (totally the oppose of what was his normal), but he is eating!

    There is one thing that was puzzling me though. Last thursday when he left home he was very pale. I was worried he had anemia and the treatment would have to be interrupted (what didn’t happen), but while he was there they checked his blood pressure and it was 100/70 (probably this is why he was so pale), what is extremely low for him. He always had high blood pressure and the best for him always been around 130/90 with the medicine. My husband did a test and stopped taking his medicine for blood pressure and apparently his tiredness and nausea improved, as well as his general well being (apparently). We started wondering how much of his nausea was due to the chemo and how much was because of his blood pressure. Or maybe is there any medical interaction of the chemo with that medicine? Of course he is going to ask that next time he goes there, did anyone here heard about it? I remember once when my blood pressure dropped to 70/50 while I was donating blood and first symptom I had before I faint was nausea.

    Ah, the pains near the liver area are there (I don’t ask him all the time because I know he doesn’t like it, but by his face and the position of where he places his hand, seems it is there. But according Hannah his mother also feels that, so I am a bit more calm about it now).




    in reply to: Husband, 55 y.o. diagnosed with cholangiocarcinoma #98735

    Hi Hannah and Mary

    Thank you very much for your messages! That is good to know you were able to work during chemo. I told my husband about the info you both wrote and it was good news for him. Not sure he would be able to work, but knowing it is possible to be more active, doing some house works, not staying resting all the time and not needing to depend on someone else for a lot of things is great!

    About the side effects and medication: as I mentioned, day 3 and 4 was really hard. Day 5 and 6 wasn’t so great either but was better than the other two. He didn’t have nausea but his appetite hasn’t improved much. The biggest problem to him was the fadigue. He was so extremely tired that even walking around the house exausts him (no need to say that go to supermarket was an impossible task).

    I had told him to call the 24 hours service number they gave him at the hospital in case he would struggle with the side effects of chemo, but he refused to call (stubborness, or he doesn’t want to admit he needs help, or he thought it was supposed to be like that, I don’t really know and couldn’t understand). But fortunately yesterday they called him because someone forgot to tell him he was supposed to do a blood test before next chemo (tomorrow). So they told him to get it done and they asked him how he was feeling.

    They said he shouldn’t be feeling that tired, but that maybe it is because his body didn’t have enough time to recover from radiotherapy on the previous week and less than one week after the last radio session he had the chemo. They mentioned that depending of how his blood tests will be he might need dosage adjusted or not. But also, he was taking his anti nausea medications wrongly. Apart from the days he thought he didn’t take it correctly, he didn’t take it correctly overall. It was prescribed 3 a day for 5 days, he understood 5 a day for 3 days. So one day he took one, other day he took two, and the other days he took 5 until he gets out of the medication. Not sure which would be the side effects for excessive dosage for that aswell.

    Seems that now he understands the importance of taking the medicines exactly how it is prescribed. Let’s see how next days will be. Fingers crossed!



    in reply to: Husband, 55 y.o. diagnosed with cholangiocarcinoma #98723

    Hi Hannah

    Thanks a lot for your message, it was very comforting. At some points seemed to me you were describing my husband. 3rd and 4th day (Saturday and Sunday) weren’t good at all. On Saturday he was vomiting and he had pains, on Sunday the painkiller he had took away the pain (that he described it is exactly on the same area as you mentioned your mother has pains. In his case maybe the liver dealing with the chemo, since he has no tumours there at the moment. He says it is near the scar area, where he felt more pains last year after the surgery), he was tired the whole day and could barely do simple things like go take the trash outside. I will show him your answers (as soon as he feels like reading anything).

    What is making me more worried at the moment is that when he was through Capecitebine he barely had any side effects (worse of all cycles was the 7th of 8 cycles, but still it was a lot, and I mean A LOT lighter than what he is going through now) and he doesn’t feel like eating anything, what didn’t happen before. He tried yesterday having some light dinner, managed to eat only half of that and that half ended up in the toilet vase few hours later. I know that each cycle is different, but I wasn’t expecting such a strong reaction right on first day of first cycle (and I know that the chemo tends to acumulate in the body, so… he was thinking he wouldn’t be able to keep the treatment).

    Soon I will see if today he is better.

    Thanks once again and I wish the best for all of us

    in reply to: Husband, 55 y.o. diagnosed with cholangiocarcinoma #98717

    Hello, I am back.

    Well, My husband had 5 sessions of radiotherapy on the week berore last week. First day (monday) he had some nausea and vomited, until wednesday he was ok. On Thursday he was really bad, probably because the times between the sessions were a lot shorter (it was around midday on first 2 days, on 3rd it was at 4 pm, on 4th it was 10 am, then went back to midday on last day). Tiredness and some crazy intestines (but by what we heard from the nurse and doctor, it was not surprising he felt like that because of the area where the radiation was).

    Last Thursday was the first chemo. It was told to us it would be 6 or 8 cycles (depending of how his body would react) and a new scan would be done around 3rd or 4th cycle. I believe they game him many medicines to him along with the chemo. I was expecting I would see my husband really weak ok that thursday and vomiting like crazy, but instead of that, apart from him looking a little pale, he was great (I even joked that if we could know that in every single chemotherapy he would be exactly like that, that I would want that daily).

    But instead of those bad side effects happen on Thursday, they happened yesterday and now he was worried he wouldn’t be able to do all 8 cycles, or that he can’t keep taking the treatment or what. He also had pain. But I am not sure if it was expected to be exactly like that or also because he said he didn’t take the medicines for the side effects as the doctor had prescribed (on Friday he said he wasn’t feeling anything so bad, so he thought he wouldn’t need all of those medicines). On previous chemo he barely had any side effects (or at least not even close as it was this time. But again, his previous chemo was Capecitebine tablets, now it is Gem+Cis intravenous, so I don’t know really.

    And then I get extremely worried. Can chemo have so bad effects like that even after 2 days? Was it really the fact he didn’t take the other medicines as prescribed? Is he getting worse and chemo isn’t working?

    After he had worsened so much, he will go back on doing what was told him to do. Fingers crossed…

    in reply to: Husband, 55 y.o. diagnosed with cholangiocarcinoma #98669

    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.

    in reply to: Husband, 55 y.o. diagnosed with cholangiocarcinoma #98667

    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!

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