Husband, 55 y.o. diagnosed with cholangiocarcinoma
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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
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
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
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
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
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…
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
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
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
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
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
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
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.
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
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…
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