Husband, 55 y.o. diagnosed with cholangiocarcinoma

Discussion Board Forums Introductions! Husband, 55 y.o. diagnosed with cholangiocarcinoma

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  • #99069
    bglass
    Moderator

    Hi Jules,

    It is nice to hear from you and thank you for posting an update on how your husband is doing with treatment.

    Treatment side effects can sometimes be different with each cycle, and stomach problems are not uncommon.   Regarding the new finding seen in the scan of the liver, with surgery and other treatments, patients do have spots and scarring that turn up on scans.  Doctors monitor these in case they are or become cancer, but until something is determined to be suspicious, try not to worry.  If a scan finding raises questions, doctors may send the patient for a different type of scan to get a better look, e.g., a PET scan.

    I hope your husband feels better in the coming days and that his treatment continues to keep the cancer well controlled.

    Regards, Mary

    #99057
    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!

    #99010
    bglass
    Moderator

    Hi Jules,

    I hope that when you hear the full scan report, it confirms that the chemo is doing its job in controlling the cancer.  It is common for chemo to affect blood counts, so doctors are very experienced in making adjustments along the way.  Chemo might be delayed a week or dosages are adjusted or treatments such as transfusions are used.  Blood counts do go up and down with treatment which is why they are so frequently tested.

    Hopefully you and your husband will be given options to deal with blood clots and the possible appearance of cancer in the bones, if that is what is found.  Cancer patients have a higher risk of blood clots, especially with some chemo drugs, and this is also something oncologists look out for and are experienced in addressing.  If a bone met is present, radiation is often recommended as you mention.

    Be sure to detail for your husband’s doctor how tired he is feeling.  Apart from the side effects, the mechanics of cancer treatment are exhausting for patients (and also caregivers) and at times take over one’s life what with all the medical appointments, tests, treatments and everything else that goes with it.  It can be hard to maintain a semblance of normal life during periods when the medical interactions are so frequent and you are feeling lousy.  I remember a period when I was having nine medical appointments in a single week and trying to hang on to working.  For many patients this calms down once the treatment stabilizes the cancer, but there will be ups and downs.

    I hope the Wednesday appointment goes well.  You might want to ask if you can have quicker access to scan reports.  In my experience, scans are read fairly quickly after the image is taken.  The hospital where my care is given puts the scan into the patient portal a day or two after the imaging, sometimes before I see the doctor.  There seems to be a different approaches from one center to the next but it does not hurt to ask if there are long waits to hear results.

    Take care, regards, Mary

     

    #99007
    Hannaha
    Participant

    Hi Jules,

    I’m sorry to hear that your husband has been struggling so much with the side effects from the chemo, and gosh! how frightening about the blood clots. It is, however, great news that the chemo is having the intended effect on the cancer, and also great news that your husband is sometimes in the mood to steal your ice cream :).

    I really hope that his doctors are able to figure out a more workable dosage that is still effective but doesn’t wreak such havoc on the rest of his system. I cannot speak from experience as we never dealt with clotting issues, but I have heard that this is a symptom some people experience on the gem-cis. What I can speak to is dosage changes. In my mom’s case, she had to be bumped down from a 100% dosage to around 75%, from the 4th cycle onwards, after her neotrophil levels really started to become a problem. This was  tough news to receive at first (we worried that less chemo would mean less effect against the cancer). As it turned out, though, a more manageable dose was what allowed my mom to keep receiving the infusions – and she continued having significant shrinkage in spite of the reduced dose.

    Please keep us posted on how your husband’s oncologist decides to address this issue at his next appointment. And wishing you continued strength in finding your way through all these challenges as they come along.

    Hannah

    #99005
    Josmb
    Participant

    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 3 weeks, 1 day ago by  Josmb.
    #98927
    Hannaha
    Participant

    Hi Jules,

    Thanks for the update. As Mary says, your doctors may decide to change the dosage depending on the severity of your husband’s side effects. This happened with my mom, as well, and it’s worth noting that even at 3/4 the standard dose, her chemo was still was very effective. It seems like your husband has found that the abdominal pain he experiences is a nuanced thing – sometimes a product of the steroids, sometimes maybe the chemo, sometimes who knows. That sounds really familiar. I have read that some people over the course of their treatment are able to adjust the amount of pain medication according to their need. This has been true of my mom, but is also something I’ve encountered in reading others’ stories, who have been able to wean themselves to lower doses, or even eventually to get off of the pain meds completely – this mostly if the the treatment regimen is doing what it is hoped it will do. The trick of course is not being over-eager and winding up with out-of-control pain. Perhaps your husband could chat with one of his doctors about how best to taper or adapt his use of those drugs to fit the need.

    I hope you get good news from your next set of scans. My mom is also getting her next scans around then. Fingers tightly crossed.

    Hannah

    #98924
    bglass
    Moderator

    Hi Jules,

    It is good to hear from you.   Your message conveys how much support and care you are providing your husband as he pursues difficult treatments and experiences good days and bad ones.

    If chemo side effects become too much to tolerate, doctors will sometimes offer to reduce the dose a bit, or stretch out the infusions.  A different chemo is also a possibility, but it seems that if a chemo is working and the patient can tolerate it, the recommendation will generally be to stay the course.  Generally if there has been progression of the cancer with a particular chemotherapy, it is not used again with the patient because the cancer may have mutated and become resistant to it.

    I hope the upcoming scans bring good news and that your husband’s side effects subside.

    Take care, regards, Mary

    #98917
    Josmb
    Participant

    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…

    #98771
    Hannaha
    Participant

    Hi Jules,

    I’m glad to hear that the 2nd round is an improvement on the first! Hopefully he will also feel better from having a more adequate caloric intake this time around.

    As for the low blood pressure, this is not something which I have any personal experience with. I ran a google search and also searched the discussion boards here, and from what I can tell (and I am of course NOT a doctor!) low blood pressure seems to be a non-specific symptom that people sometimes have, whether it be a response to a chemotherapy regimen, perhaps a delayed side effect of radiation, or even a symptom of the disease itself.  It could even be a result of your husband’s poor appetite last week. Needless to say, it is something to keep an eye on and make sure that his doctors are also paying attention to it if it persists.

    Finally, the liver pains. I can of course only speak to my mother’s experience on that but it does seem that pain can be a confusing and even misleading indicator of what is going on. Particularly given that your husband’s pain seems to have arrived suddenly with his first chemo cycle and because his last scan showed no evidence of involvement this time with the liver, I would try not to worry too much about it for the present, and just bear in mind how hard his liver is having to work right now to contend with what are, essentially, potent poisons (albeit poisons that are doing good work against the cancer) that are introduced to his system during infusion. It’s not surprising that his liver might be a bit insulted by the whole process, especially given what it has already had to recover from.

    This may or may not be something that you and your husband would want to explore (and do run any kind of supplements like this past your doctors before you start taking them), but my mom has followed the advice of a naturopath for ways to support the healthy function of her liver through her chemotherapy. She takes milk thistle (on which: http://pressroom.cancer.org/releases?item=212) and corn silk. The milk thistle is in capsule form, 5oomg, and she takes it morning and night. She does not take it for on infusion days or a day or so after, so as not to interfere with the chemo’s therapeutic effect, but she takes it on other days to support the liver’s normal metabolizing processes. The corn silk tea she drinks more on a “when she thinks of it” basis, and it purportedly supports both liver and kidney function which, like the milk thistle, helps her body filter the platinum roaming around in her body after the infusion. The science on corn silk seems less clear than with milk thistle, but as an interesting aside, there have been recent studies indicating that some components in corn silk should be investigated in the future for their anti-cancer properties. When my mom first started drinking the stuff, I clung to any little drop of benefit, real or imagined, that she might be able to glean from it. It has in any case I think not done her any harm, and it has a mild grassy taste that can be sort of comforting.

    Fingers crossed for continued upward trajectories-

    Hannah

    • This reply was modified 2 months, 4 weeks ago by  Hannaha.
    #98768
    Josmb
    Participant

    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).

     

    Jules

     

    #98735
    Josmb
    Participant

    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!

     

    Jules

    #98731
    bglass
    Moderator

    Hi Jules,

    Hannah’s advice from her mom’s experience is spot on and what others on this board have described.  The medications prescribed to address pain or treatment side effects are intended to nip symptoms in the bud, when they first emerge.  When patients try and tough out symptoms without the meds, and only reach for them when pain or nausea are out of control, the meds do not work as well.

    It also helpful to try these meds out early on to verify they work for the patient.  There are multiple options, so if a pain or nausea med does not work well, another can be tried.

    Going back to the question of pain meds, this is a good opportunity to repeat a general comment that pain control works best when it starts early.  Pain becomes harder to treat if left untreated until it is unbearable.  I know we would all like to be tough, hate having to swallow pills and recognize that the meds for pain and side effects can have side effects of their own.  Nonetheless, meds prescribed for pain and side effects have their important place in cancer treatment, in helping us maintain a good quality of life as the chemo and other treatments are wrestling the cancer to the ground.

    I hope your husband is feeling better.  After a cycle or two, usually the bad days of the cycle can be identified and planned for.  I was working while having chemo and learned to time the bad days to the weekend.

    Take care, regards, Mary

    #98726
    Hannaha
    Participant

    Hi Jules,

    I hope your husband is feeling better today!

    I can’t emphasize enough how important it is to try to get ahead of the nausea. My mom really struggled w/ nausea during her early cycles, in part because there was a mixup w/ the pharmacy and they were giving her half-sized sublingual tablets of Zofran when dr’s instructions were for larger dosages to swallow. Apparently sublingual tabs are poorly absorbed if you swallow them. And because my mom really really wanted to be taking as few pills as possible, she was also trying not to take any except when she was really desperate. End result was she often had uncontrolled nausea through her mid-week and there were some conversations about how she wasn’t sure how she would get through it. Once we got up front on the Zofran (and got the right prescription!) things got easier, her appetite improved, and her weight stabilized.

    If he continues to struggle with side effects, your doctors might start talking about a dose limitation on the gem-cis. My mom eventually got a dose reduction for the last three cycles before her surgery, and her post-surgical dosages have also been somewhat lower than what they usually see as the standard 100% dose. When we first had the dose reduction, we were all really anxious about whether it was going to be less effective. But the explanation we received (and which makes sense to me) is that the ‘standard’ dose is  based on an abstract ‘average’ maximum patients in the trials were able to receive before experiencing toxicity. But none of us are exactly average, and dosages often need to be tailored for individuals’ needs. Especially since your husband and my mom have both had resections, their livers may have to work a little harder to deal with all the chemo nastiness coming down the pipes.

    Fingers crossed that things start to get easier with the next infusion.

    Hannah

    • This reply was modified 3 months, 1 week ago by  Hannaha.
    #98723
    Josmb
    Participant

    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

    #98720
    Hannaha
    Participant

    Oh, and one more note regarding the pain: my mom had a lot of pain (centered around her liver where her tumor was) during her first 6 cycles. The pain increased and decreased according to her weekly cycle. She (totally understandably) worried that the pain meant that the chemo wasn’t working and the cancer was growing. In her case, we discovered that the pain she was feeling was probably actually the irritation and inflammation associated with cancer cells dying and being disposed of by her body (as she had a significant shrinkage of the tumor). Even post-surgery, she gets a feeling of pressure around her liver during the bad days of her weekly cycle, which we assume to be her liver sort of swollen and angry as it tries to metabolize all the nasty stuff in the chemo cocktail. The sense of pressure always recedes as the cycle abates.

    Suffice to say, it is very hard to know until you have a scan what the pain your husband (or my mom) is experiencing actually means.

    • This reply was modified 3 months, 1 week ago by  Hannaha.
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