Husband, 55 y.o. diagnosed with cholangiocarcinoma

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

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  • #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 3 weeks, 5 days 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 1 month 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 1 month ago by  Hannaha.
    #98719
    Hannaha
    Participant

    Hi Jules,

    There are lots of discussions on this board about gem-cis and its side effects. Worth running some searches to see what experiences other have had.

    My mom is about to start her 10th (and hopefully final!) gem-cis cycle, 6 pre-operatively and 4 post-operatively. What we’ve learned along this long road is that each week things are different, but that there are some general trends. By and large, the day of the infusion goes pretty well, as does the day that follows. They pump her up with anti-nausea medications and with dexamethasone. We were told that day 3 was the really hard one, but for her, days 1-4 have typically gone pretty well (if kinda ‘zippy’ from all the dex), whereas days 4-6 were some shade of crappy, and then just as she started feeling good again it was time to head back in for another infusion. This pattern has been changing of late though as the side effects accumulate.

    Because the gem-cis tends to sneak up on you mid-week, it’s really important to keep up with the supportive meds for when he reaches the low point in his weekly cycle. If your husband is having a lot of trouble with particular side effects, make sure that his doctors know about them. They have every kind of medicine in their arsenal (and can also mess with dosing, etc) to help mitigate. My mom has now had this chemo administered by two different hospitals, and we’ve discovered that there is a lot of variation in terms of what kinds of supportive anti-nausea meds/etc. are offered, how they dose the dex, etc. From experience: don’t skimp on the anti-nausea meds. Better to take them as a prophylactic than to struggle to get the nausea under control once it’s pounced. We’ve found that a lot of my mom’s other side effects (trouble sleeping, acid reflux, etc) are related the dex that she needs to take, and have experimented (never entirely successfully) with different strategies for tapering her dosage down through the week.

    It’s worth noting that your husband will be simultaneously experiencing several different overlapping cycles in terms of how the drugs affect him, and that each week will look different. In addition to the usual weekly up and down (as well as a longer up-down of each 3-week cycle)  both drugs also impact blood cell production according to a different schedule. Cisplatin has a long cycle with a neutrophil nadir at 18-23 days, and recovery by day 40. Gemcitabine has a shorter cycle, with nadir at 10-14 days and recovery by day 21. In practice, this means that the gem’s low point will usually be during the off week, when your husband will likely be feeling better, while the cisplatin’s low point will kinda slough over into the start of the next infusion cycle, and will sometimes overlap. These may feel invisible but they are cumulative in terms of their impact on his blood counts. Whether he feels them or not, these are the times when he will be most vulnerable to picking up an opportunistic infection. He should always be extra careful about being in public, handwashing, etc., even when he’s feeling pretty good, because even a common cold can be dangerous when your neutrophils are low. My mom took to wearing a hospital mask when in crowds, which was very effective in warding away unwanted contact.  In my mom’s first 6 cycles, she really struggled with low neutrophil counts, and several times had to have her infusions delayed as a result. These delays were really distressing in the moment, and I remember her expressing her anxiety that the delays meant that she wasn’t responding well to the chemo (which turned out not to be true at all!). At this second hospital where my mom is now getting her infusions, they’ve taken an aggressive approach to this by giving her regular doses of neupogen, which helps boost her blood cell production. It has its own range of side effects, though. Sigh.

    I hope some of this is useful, and I really hope that your husband’s cancer will have a strong response to the gem-cis!

    Hannah

    • This reply was modified 1 month ago by  Hannaha.
    #98717
    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…

    #98672
    bglass
    Moderator

    Hi Jules,

    Some of our patients have had radiation therapy for individual lymph nodes, also to alleviate pain and to slow down the cancer’s progression.  I hope the therapy works well for your husband.   Gem-cis is an effective chemo for cholangiocarcinoma, with many patients seeing either shrinkage of tumors or their cancer stabilized.  The concern with mutation is why, with this cancer, it is always good to be thinking one step ahead as to what the next treatment will be if or when the current treatment loses effectiveness.  From what you describe, your husband’s doctors are thinking about this, for example, by flagging an upcoming clinical trial.

    A point that seems to come up a lot for patients is pain management.  This is a concern that needs to be strongly pushed with doctors, to find the medications and other treatments that keep pain under control.  There can be a lot of trial and error in figuring out the right mix and the right mix may change over time.  I hate to see stories of patients having a pain medication prescribed by the oncologist that is not working, where patients feel they must soldier through.

    I hope that your husband’s treatments go well and get the cancer back in check.  Take care and regards, Mary

    #98669
    Josmb
    Participant

    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.

    #98668
    bglass
    Moderator

    Hi Jules,

    Thank you for the update.  Radiation is effective for many patients in relieving the pain from bone mets.  Hopefully it will work its magic for your husband.  It is important to be proactive in getting the medical help needed to manage pain, whether through radiation or other means.  Some medical centers offer a palliative care practice that supports pain management for any patients whose illnesses may bring pain; this may be something to investigate in addition to whatever the oncologist recommends.

    Your comment about the unreliability of CA 19-9 testing to flag recurrence is an important one.  I saw a research study along the way that showed, for its sample of cholangiocarcinoma patients, that only about half saw their CA 19-9 rise in advance of recurrence, and this included some patients whose CA 19-9 was high at diagnosis.  This is why doctors often tell patients not to get too focused on tumor marker numbers.

    I hope the continued treatment stabilizes this recurrence, and that your husband feels better.

    Take care and regards, Mary

    #98667
    Josmb
    Participant

    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!

    #98246
    bglass
    Moderator

    Hi Jules,

    Thank you for your update.  It is great to hear how well your husband is doing, and how positively his doctors are viewing his progress.  Your husband must be feeling relieved.

    In no way am I meaning to dampen this welcome good news, but I do want to comment on surveillance after treatment.   It is important to keep a sharp eye out for any signs of recurrence.  This includes having periodic chest-abdomen-pelvis scans (typically, from what patients report on this board, four per year during the first two years) and bloodwork, as well as alerting his doctors if anything seems amiss.

    I hope you will stay in touch.  It is always nice to hear good news stories.

    Regards, Mary

    #98233
    hercules
    Moderator

    Hello Jules, mine is not a sad story, I have remained cancer free for 13 years with no recurrence , it is possible. Every case is different so keep the faith and keep doing what you are doing. Congratulations on your recent news and scan !  Remain positive and it is awesome that his cancer markers are trending down , do things he loves and laughter is great medicine so try to have some fun as often as possible, eat healthy and keep his weight up, he can win against this cancer

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