Husband, 55 y.o. when diagnosed with cholangiocarcinoma

Discussion Forum Discussion Forum Introductions Husband, 55 y.o. when diagnosed with cholangiocarcinoma

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  • #14848

    josmb
    Participant

    Hello Helen

    My husband was given information about what to expect (same as was given to him when he started radiotherapy, but I am not sure if he had read that), and also was given to him a phone number to call if needed, but because of his stubborness he didn’t want to call them (maybe he thought it was normal, didn’t want to bother, I don’t really know, I couldn’t understand his reasons).

    Fortunately seems someone in the hospital forgot to tell him he needed to do blood tests before next chemo and they called him to talk about it and they asked how he was feeling, so in the end he talked to a nurse about what was happening (I am not sure if they mentioned about being in crowded places and stuff, since he went alone to the chemo. I had to stay with our 2 years old son).

    My husband is feeling better now, not great, but better than before. He is not vomiting anymore but he is extremely tired (we couldn’t go out and do regular stuff like going to the supermarket because it exausts him walking even inside home). His appetite hasn’t improven much either.

    Apart from him not having taken the anti nausea medicines as he should have (he took too few or too much. It was prescirbed 3 a day for 5 days, he understood it was 5 a day for 3 days, and one day he took one, the other he took 2, and other days he took 5. I don’t know if taken it excessively would cause side effects like that or once the nause was triggered it is hard to control later), the nurse said he shouldn’t be that tired. One of the reasons maybe was because his body hasn’t yet recovered well from the radiotherapy and then he got the chemo over it. So he will try to have his blood tests done today, and then they will see if any dosage need to be adjusted. Hopefully his body will recover better and now taking the medicines for the side effects exactly as it was prescribed will help him.

     

    Thank you very much once again!

    Jules

    #14849

    Helen_ammf
    Moderator

    Dear Jules

    It’s good to know your husband has been in contact with the hospital.  It will be helpful to them and, of course, to him to talk through what is happening and how he feels.

    The blood tests should show up if there’s anything happening that needs medical attention – and then the hospital can address this for him.  Although the main side effects will be well known, every person is different and can react differently to the treatments.  Fatigue is common, but if it’s extreme then the hospital team will do their best to find out why, and to address this for your husband.

    Hopefully, if your husband makes sure now to read all the information he is given, and to take the various medications at the right time and in the right dose it will help him to get through this treatment …

    And don’t forget yourself in all this.  With a two year old to care for, you must get exhausted.  If you get time and when you feel ready to, you might like to have a look at the Penny Brohn website, as they offer information and helpful advice not only to those with cancer, but also to those who support them.  See: https://www.pennybrohn.org.uk/services/supporting-someone/   or even call them on their Helpline: 0303 3000 118.

    With kindest regards

    Helen

    Please note it is not appropriate for AMMF to give medical advice or recommendations, and all details provided are for information purposes only.

    #14867

    josmb
    Participant

    Thanks a lot for all the information and the link, Helen! Yeah I need to take care of myself a little bit too…

    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. 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.

    Thank you very much once more!

    Jules

    #14868

    Julie_ammf
    Moderator

    Dear Jules

    We are glad to hear that your husband had a better reaction to his chemo this time.

    Can we suggest you make an appointment with your GP regarding your concerns with his blood pressure and also contact his CNS to discuss this issue.

    Kind regards

    Julie

    Please note it is not appropriate for AMMF to give medical advice or recommendations, and all details provided are for information purposes only.

     

    #14939

    josmb
    Participant

    Hi all

    My husband is now in the third cycle of chemo, each week seemed to act a little bit different. His chemo happens on Thursdays. On first he used to feel better on Thursdays and Fridays,  weekend was really bad and he used to be better already on wednesday. On first week of first cycle he was especially worse probably due to the radiotherapy that had happened one week before.

    On second cycle the days he felt worse switched a little, it started on Sunday at first week, and even on Thursday before he went to the cancer centre he was feeling very tired, and got better after the chemo.

    The off weeks he is usually good, except that he says that when it is getting closer to the end of the cycle week his back hurts more.

    Now on third cycle he started feeling worse on mondays.

    The difference now of this second week of third cycle is that now he is feeling the back and the hip pains again (or at least stronger, since he is complaining more about it now).

    He mentioned some abdominal pains in all cycles. Some gets worse when he is constipated due to the steroids, some others are worse right after the chemo (liver area). My guess is that it is his body dealing with the chemo, since he lost part of it last year (and what regenerated is in a different shape than it should be).

    Tiredness really kicks him hard and the heat of last days really didn’t help either. Hard to focus on anything and that bothers him since he always had been a very independent and active man.

    He mentioned to me that after the chemo he managed to take less painkillers (he is still doing that by what we talked earlier this week. I am not sure this is ideal, but…) and now I am not sure if these pains he is feeling are due to that, or the cancer is getting worse, or if his body is getting used with the painkiller (he is on codeine, that is an opioid. I know that morphine can cause “addiction” so I don’t know if that can be the case as well).

    At least his appetite is apparently back to what it used to be.

     

    One thing that he was wondering (surely he will talk to someone about it next he goes to the cancer centre on Thursday of next week): reading stuff on internet, seems that GemCis is better for inoperable primary tumours and Capecitebine is better for methastatic cells in lymphnodes? He doesn’t have the primary tumour anymore and he was feeling a lot better with capecitebine last year, and these back and hip pains he started to feel was after the interruption of the treatment with capecitebine and while we were waiting for the treatment in NHS start it was getting worse ( *sigh* )

     

    Thanks again for the attention

     

     

    #14940

    Julie_ammf
    Moderator

    Dear Jules

    Thank you for the update on your husband.

    The effects of chemotherapy can build up over treatments which may explain how he is feeling.

    Can we suggest that you write down any questions that you have for your husband’s consultant which he can take with him on his next appointment. In this way, if you are unable to attend, you can feel part of the process and have any queries answered by the team who are treating him.

    Kind regards

    Julie

    Please note it is not appropriate for AMMF to give medical advice or recommendations, and all details provided are for information purposes only.

    #14981

    josmb
    Participant

    Hello all. Some updates:

    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

    • This reply was modified 2 months, 4 weeks ago by josmb.
    #14984

    josmb
    Participant

    Update: he will need platelets transfusion today.

    #14987

    Helen_ammf
    Moderator

    Dear Jules

    Thank you for posting this update on your husband’s treatment – when someone is undergoing a harsh chemotherapy regime, it can be very difficult to cope with the various side effects, and to understand why certain things are happening.  If in any doubt, it is always best to contact your husband’s medical team for advice.

    Hopefully, the platelet transfusion will help to improve things for him soon …

    Thank you again for sharing the journey you and your husband are undergoing – we hope it is helpful to you to post. We can see that many people are reading your posts,  so we know it is also very helpful to many who find themselves in a similar situation …

    With kindest regards and all good wishes

    Helen

     

    Please note it is not appropriate for AMMF to give medical advice or recommendations, and all details provided are for information purposes only.

    #15013

    josmb
    Participant

    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!

    • This reply was modified 2 months, 1 week ago by josmb.
    #15015

    Julie_ammf
    Moderator

    Dear Jules

    Thank you for the update on your husband. May we take this opportunity to wish him well for his ongoing treatment.

    We can see that many forum users are reading your updates and I am sure they are finding your posts informative…so thank you again for sharing.

    Kind regards

    Julie

    Please note it is not appropriate for AMMF to give medical advice or recommendations, and all details provided are for information purposes only.

    #15104

    josmb
    Participant

    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

    #15132

    josmb
    Participant

    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…

    #15134

    Julie_ammf
    Moderator

    Dear Jules

    Thank you for taking the time to update us on your husband’s progress and we are sorry to hear that you have not had better news.

    We hope that the radiotherapy helps with his pain and if we can answer any queries that you may have, please get in touch.

    We will be thinking of you…

    Kindest regards

    Julie

    Please note it is not appropriate for AMMF to give medical advice or recommendations, and all details provided are for information purposes only

    #15154

    josmb
    Participant

    Just one update to those who is following this thread.

    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 at the hospital and yesterday he managed to take less painkillers during the day as usual.

    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 when it opens.

    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…

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