Husband, 55 y.o. when diagnosed with cholangiocarcinoma

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

This topic contains 16 replies, has 2 voices, and was last updated by  Helen_ammf 6 days, 6 hours ago.

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  • #14128

    josmb
    Participant

    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 17th 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 by the end of October. His Ca 19-9 levels were 52 in May and 31 in June. He went through tomography scan on Tuesday (we haven’t shown it to the oncologist yet, but the other local lymphnodes are smaller in comparison with the scan done before the operation, and it says there was some kind of fat on liver that could be associated with the operation) and the blood tests done on monday 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.

    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 (the skin of his hands are still very dry). 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.

    Anyway, this is our story so far, I hope that in a close future us three (my husband, our 1.5 year old son and me) can look back at this and say we definitely had won this battle against cholangiocarcinoma!

    • This topic was modified 7 months, 1 week ago by  josmb.
    #14130

    Helen_ammf
    Moderator

    Dear Jules

    Welcome to AMMF’s discussion forum, and thank you for sharing details of your husband’s diagnosis and treatment – I’m sure this will be of great interest to many who visit our forum.

    It does sound as though his medics were prompt with him, and the chemo capecitabine (Xeloda) is now what is recommended after surgery following the outcome of the long running BILCAP trial*, so it’s good that that was prescribed for him and also that it seems that it has been effective for him without too many side effects.

    All of us at AMMF send our very best wishes for your husband’s continued wellbeing – please come back and post updates when you can.

    With kindest regards

    Helen

    *If you’re not aware of the BILCAP trial, you can find further information here: https://ammf.org.uk/2017/05/18/bilcap-results-show-chemo-improves-survival/

     

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

    #14560

    josmb
    Participant

    Hello all! I am back here with update about my husband’s condition.

    Few days after my last post we had been at the oncologist in Brazil. He said that all looked good and if cancer wasnt something that could come back, he would say my husband is cured. He also said to don’t worry about that 38.5 Ca 19-9, since it is too little above the level. He would worry if it had doubled or tripled.

    Now we moved to UK and we will do the follow up exams through NHS. His first appointment with oncologist here was at the end of January. We still didn’t get a scan for him but the level of his Ca 19-9 was 26! Lowest it ever had been since we found out the cholangiocarcinoma (nearly one year ago now). He hasn’t been under any medication for cancer since the end of October,  so I guess it is good news!

    I confess I still don’t feel like checking the rest of the forum because reading the sad stories always put me really down and many things go through my head since it is still too recent, so for now I am still only giving the updates from my husband and focusing on his specific case.

     

    I hope this last good news would bring some light and hope to those who are also fighting against this nasty disease!

    • This reply was modified 3 months, 2 weeks ago by  josmb.
    #14563

    Helen_ammf
    Moderator

    Welcome back, josmb!

    It’s good to know how well your husband is doing – that must be such a relief for you both.

    I am sure you will be interested in the following information from ESMO, the European Society for Medical Oncology, who have set out follow-up guidelines for patients after treatment for biliary cancer (cholangiocarcinoma): ‘Biliary cancer: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up’:

    “Follow-up and long-term implications
    Follow-up after potentially curative treatment should consist of 3-monthly visits during the first 2 years after therapy including clinical examination, laboratory investigation (including LFTs and lactate dehydrogenase), tumour markers (carcinoembryonic antigen, CA19-9) and CT scan of the thorax, abdomen and pelvis [IV, A]. Regular visits can be extended to 6-monthly thereafter and prolonged to yearly visits after 5 years of follow-up.”

    If you have a further follow-up appointment with the oncologist, it might be worth taking a copy of ESMO’s guidelines with you.  If you haven’t been given another appointment, we would suggest you request one – possibly for a couple of months’ time.

    In the meantime, you might be interested to know about AMMF’s Cholangiocarcinoma Conference, which is coming up in early May.  We always welcome patients and their caregivers at this event – you will find more details, including how to register, here: https://ammf.org.uk/ammf-conference-2019/

    With kindest regards

    Helen

    This is the link to the full paper:
    https://doi.org/10.1093/annonc/mdw324

    *ESMO: European Society for Medical Oncology

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

    #14681

    josmb
    Participant

    Hi all, I am back with not so good news…

     

    My husband’s tomography was done on last 28th, today we had an appointment with the GP. He was complaining about pain in the hip and other things that seemed to be musculoskeletal.

    Even though his Ca 19-9 was low over a month ago, he wasn’t exactly fine. Lymph nodes near aorta near his backbone are bigger and he has a tumour in his lung (I am not sure which of size,  all our world fell down when we heard it).

    His previous scan (in Brazil was in early November. In theory it had do be done on early February but NHS wasn’t quick enough. He will get an appointment with an oncologist probably next week (we hope. We were told it would be this Friday or on the following one), but the nurse told us that a new chemotherapy might start only 2 weeks after the appointment (so in one month).

    Apart from the pain he feels, he looks fine. If he didn’t have any pain at all we wouldn’t even think his cancer was back.

     

    My question is: being for that long without treatment, wouldn’t this extra month be too long time? Anything we can do? We really can’t afford whole treatment private, but I was wondering of we could do one circle private and the rest on NHS (I am not even sure if this is possible, just wondering, I am kinda desperate since we got the news few hours ago)…

    #14684

    Helen_ammf
    Moderator

    Dear Jules

    I’m so sorry to learn about the further problems your husband is now experiencing.  I don’t know where your husband is currently receiving his care, nor the name of his consultant but, as he has already been through the standard treatments, it might be worth considering a clinical trial.

    There is a list of clinical trials currently open in the UK on AMMF’s website: http://ammf.org.uk/clinical-trials/

    As you will see from AMMF’s list, many of the clinical trials are now those investigating targeted therapies – so your husband would need to have his tumour screened to see what mutations there are, if any, so that he could be put forward for the appropriate trial.

    At this stage also, your husband could consider a getting a second opinion from a consultant knowledgeable and experienced in caring for patients with cholangiocarcinoma.   You can ask your husband’s consultant or his GP to write a letter of referral to a named consultant of your choice now  – a second opinion would help to confirm that the treatment path that is now being suggested for your husband is the best one for him, to look at other possible choices, and to discover more about screening. Depending on what part of the UK you are living in, we can make a suggestion for this referral if you email us at:  info@ammf.org.uk

    In answer to your question, we believe you can request a private consultation with a named consultant so that your husband is seen as promptly as possible, and then go back to having the suggested treatment/s within the NHS.

    For your information, you might like to look at the details re screening/molecular profiling on the this site, as they explain it clearly:  http://sarahcannonresearch.co.uk/molecular-profiling/personalised-medicine/

    I hope some of this information is helpful to you, but do email if you would like those contact details.

    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.

    #14686

    josmb
    Participant

    Thanks for your answer, Helen.

    I showed your answer to him. The issue here specifically is that he didn’t have any treatment yet here in UK (we discover his cancer when we were in Brazil, his operation and chemo happened there, and it ended in last October. Since then he hasn’t been under any treatment). We had an appointment with an Oncologist on late January in Forth Valley (Falkirk). Back then it was basically showing the relatory of the Brazilian oncologyst, telling our story, giving them the CD’s with the images of the previous 2 scans (the one before the operation and the one in early November, after the chemo – this last scan was clean) and for a request of a next scan (that should have happened in early February, 3 months after the previous one), but it happened only on late March. So I believe that by the time he got the scan here he already should have been under chemo again. That pain he started having on the hip started around Christmas, it was light back then, started to get more painful and it got considerably worse after the scan on late March.

    Two days ago we went back in Forth Valley and the appointment was with a GP that updated us with the sad news, and we were told we would be forwarded to Glasgow (not sure which centre exactly, my husband said it was one about rare kinds of cancer, the same where his uncle got treatment for his non hodgkin lymphoma).

    We were told the appoitment with this new oncologyst coudl take 2 weeks (they said “this friday or next one”, I believe it won’t be this one since it is Easter…), and they said usually the chemo starts 2 weeks after the appointment. I am really worried about waiting one month for the start of the real treatment (for now he is just under painkillers) and yesterday he had a light fever (37.3), so getting a private one at this point would basically be a “first opinion”. So if I understood it right that referal letter can only happen after the appointment with the NHS oncologyst (since no treatment started yet)?

    Thanks in advance once again.

    Jules

    #14689

    Helen_ammf
    Moderator

    Dear Jules

    In order to get a 2nd opinion, it would be best if your husband had his latest scans and reports to send to the consultant.  Sending this information is usually done hospital to hospital – that is, when a 2nd opinion is requested, the consultant will ask for the current hospital to send these scans etc, through.  From your post, it would seem you husband hasn’t had a scan since last November in Brazil, and it would really need to be more current than that to see exactly what is going on now.

    However, if your husband is suffering significant pain and starting to have a raised temperature then he may have an infection beginning and, because of his medical situation, he really needs some medical attention promptly.  We would suggest that he gets another appointment with his GP as soon as possible to explain his symptoms, and get some advice  The GP might also be able to push for a more urgent appointment with the oncologist.

    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.

    • This reply was modified 2 months ago by  Helen_ammf.
    #14692

    josmb
    Participant

    Thanks Helen for your reply.

    My husband had a scan in UK on 28th March (this is the scan that showed that now he has enlarged lymph nodes near aorta, spine and abdomen, and a small tumour on his lung). The scan in November in Brazil was clear.

    The appointment with the NHS oncologist apparently will be on 1st May (we haven’t received the letter yet, but the nurse informed us about the day). He already has a GP booked for 7th May (we had been there on Tuesday to get the prescription for the painkillers. She had asked to us to book again with her in 2 weeks, but 7th May was closest we could get). Sadly the light fever started on the following day we had been there.

    In this case, if he has fever again, should we look for an emergency service?

     

    Thanks again

    #14694

    Helen_ammf
    Moderator

    Dear Jules

    If the appointment with the oncologist is 1st May, that is a little over a week away so, as long as this is confirmed, then you are unlikely to get one sooner than this.

    However, in the meantime, because of your husband’s diagnosis, if his pain gets worse and/or he has a fever, then you really should get emergency help for him.

    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.

     

    #14695

    josmb
    Participant

    Thanks Helen

     

    Yes, now it is confirmed: the appointment will be on 1st May (we got the letter few minutes ago). I will tell him about looking for emergency, in case the fever comes back and gets worse.

     

    Happy to see the appointment will be with one of the doctors listed on the link of the AMMF website.

     

    Thank you very much once again, and I will keep this topic updated.

    • This reply was modified 1 month, 4 weeks ago by  josmb.
    #14776

    josmb
    Participant

    Hello, I am back.

    Well, we had our appointment (that was actually in April, since they had a cancellation on late of that month and they rebooked my husband). We had been with one of the specialists listed on AMMF website.

    For now he is only taking painkillers (Paracetamol and another one I don’t remember the name, an opiod that is not morphine). It is being hard for him to sleep, as laying position hurts more, and beign sat while sleeping is not really ideal.

    The specialist said she believes that tumour in his lung is indeed a methastasis and not a primary, but whatever it is, the chemo would be the same (so not worth trying for a biopsy to know exactly what it is I believe). But she said three things we found really interesting and that brought us some hope.

    She mentioned there are two kinds of cholangiocarcinomas, one that grows slowly and another that grows fast (we are praying that the one my husband has is the slow one).

    Now particularly in our case here, she mentioned this pain he has on his back and hip isn’t so typical of a pain that a grown lymphnode would cause on a nerve or something (especially because at the beggining of that kind of pain, if my husband would click his knee, the pain on the hip would go away), so she asked more exams to check that: another CT scan to compare with the previous one from March and also a MRI, to check if that pain isn’t actually from bones (she mentioned that CT scan is not so good to check bones). The third fact that made us a bit puzzled is that even though the cancer originated in the liver and apparently spread to other areas, all his liver lymphnodes are NORMAL (the ones that are enlarged are outside that area).

    My understanding of how those things work is the cancer cells would have left the primary tumour and would have spread through the body through lymphatic system. At the time of the operation his liver lympnodes were enlarged (one of them especially was really big, and that one was removed), but I also know that only enlarged lymphnodes are not a sign of cancer (anything can make them swollen). So we started to wonder: how did that cancer spread to other areas through a “healthy” lymphnodes? Or by the time of his operation, only that one removed had methastasis and it already had “sent” cancer cells to lymphatic system outside liver? Shouldn’t the liver ones be also enlarged now, if it was a cholangiocarcinoma methastasis? Have you heard any story like that? Of course we are going to ask that on next appointment (on last appointment was too much to process and we didn’t think on asking that at that time), but I thought I could share it here and see if other people have a similar story.

    Apart from the expression of pain my husband has, looking at him you can’t tell he has cancer. When painkiller has good effect and he is “distracted”, he is the lovely normal man I married. By what I read some other people saiyng on internet about their cases, seems to me the case of my husband is very atypical (I hope it is a good sign really). Sometimes I just wish this all was a nightmare, that his lymphnodes are enlarged by another reason other than a cholangiocarcinoma, another reason that has more studies on it.

    Thanks for reading

    #14815

    josmb
    Participant

    Hello again.

    We had been on the return appointment. Scans showed cancer grew up a bit (not a surprise, as he wasn’t under treatment). Two small nodules on right lung (both smaller than 2cm, one smaller than 1 cm), enlarged lymphnodes (doctor now said the liver ones are enlarged too, and they were on past scan, so I don’t know, both me and my husband had understood something else). There might have some bone metastases on pelvis (he doesn’t have any pain in that specific sport) and backbone near hip, but doctor cannot be certain.

     

    In a way or other, these lung tumours and the possibility the bone ones are the smallest problem now. The problem is the cancer on the lymphatic system, and the lymphnodes near the backbone (on that spot that might have cancer) are especially enlarged and they are pressing the nerves, this is why my husband is in so much pain.

    So, on next week he will go through 5 sessions of radiotherapy (for the enlarged lymphnode near spine and to also deal with the possible tumours on bones), and on following week he will start the Gem+Cis chemo. She said that by next week after radio he might feel less pain and be more mobile.

    Then she said that she has few patients that chemo has effect and they survive for some years, but many of them chemo doesn’t respond well and they have only months left…

    Well, I am devastated. Now I remember about the possibility that everything could have been different if last year that doctor would have removed all liver lympnodes (I know we couldn’t be sure if back then the cancer already wasn’t in other lymphnodes outside liver,  but…)

    Apart from the 2 small tumours on right lung, all the rest of the organ looks fine. Left lung and liver also look fine and apart from the lymphnodes, no other abnormalities were found. So I hope his relatively good condition would help, that the chemo would work, that I can have my husband and our little son can have his dad for some more years…

    Anyone here had a similar case that the person survived for some years? How many years? I know each case is different, but I just want to bring some hope to my heart at the moment.

    Thanks for reading

    #14837

    josmb
    Participant

    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…

    #14843

    Helen_ammf
    Moderator

    Dear Jules

    I’m sorry to learn that your husband was feeling so ill after his chemotherapy.  Gemcitabine and Cisplatin is a powerful combination of chemotherapies, and the effects will not always be felt immediately.  However, this is a well tried and tested combination and so the side effects are well known – which is why your husband was given those various medications to help combat them.  Hopefully, if he is now taking that medication, he will be beginning to recover.

    However, if the side effects are continuing and not managed by the medication, or are worse, or if he has a temperature above 38C, then you should contact your husband’s doctor or clinical nurse specialist straight away for advice.

    When your husband goes for his second cycle of chemotherapy, the team will ask about these side effect, check his bloods and his general health, and may then adjust the amount of chemotherapy they give him so that he doesn’t suffer so many side effects.

    You should have been given information about what to expect during the chemotherapy treatment, phone numbers to contact, and other advice, eg avoiding crowded places at certain times during the chemotherapy cycle when your husband’s immune system is at its weakest and he will be susceptible to infection.  If not, then it would be advisable to contact the department where your husband is receiving his chemotherapy to ask for this.

    I hope this has been helpful for you.

    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.

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