Xeloda
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Mary,
Yes, her Xeloda are very large pink/peach colored pills for her chemo. She has Ben trying to follow the directions and instructions for her chemo (she’s 2 weeks in and 1 week off with 3 of the 500mg pills 2x a day)
I guess I need to call her onc nurse and see if I can get some more answers and maybe a med change for her.
Dear Hopeseeker,
Your description of your MIL’s issues with xeloda sent me to my files for the instructions from when I was treated with the same drug.
Nausea and vomiting are listed as potential side effects.
While xeloda has the convenience of being pills you take at home rather than an infusion at the hospital, the instructions are very specific. You might want to ask if these instructions are causing any problems. My instructions indicated that the tablets (which are horse pills) must be swallowed whole at the time of a meal or within 30 minutes after eating. Further, they must be taken with a large glass of water. In my case, they had to be taken every 12 hours. I did not have issues with nausea but I found this regimen complicated to follow as I had to be careful about spacing meals and pills with my commute to and from work. Your MIL may have different instructions but likely they are also very specific.
The other question I would ask is what medications was your MIL given for nausea and whether she should ask the doctor for something different. Nausea and vomiting side effects from chemo are generally controllable with anti-nausea meds, but patients on this board often report having to try different ones to see which works best for them.
It is positive that your MIL is still very interested in eating. Hopefully her nausea can be treated.
Regards, Mary
Mary,
Thank you for your input and advice. I do feel it’s so frustrating to hear things from drs and then it not be the whole picture. I also understand the drs don’t always know exactly what is going on until time tells them more.
Hi Hopeseeker,
As you are experiencing, there can be ups and downs during the course of cancer treatment. Your MIL would have liked better tumor marker results, but you are right, they are not always definitive. It is great to hear her swelling is reduced and she is feeling better.
You asked why doctors use the markers. My impression is that the markers used for CCA (mainly CA 19-9, sometimes also CEA) can be very predictive for some patients but less so for others. They are less invasive and/or less costly than other ways to monitor treatment such as scans. In the end, they are one piece of information among many that doctors use to check how you are doing. Hopefully, the next round of tests will give a clearer picture.
Your MIL is very blessed to have you looking out for her. I know it is tough since she does not live nearby.
Regards, Mary
My MIL got her tumor markers back last week and they have gone up despite the chemo she’s on. Her oncologist is going to keep her on the chemo until the end of October when he checks her tumor markers again. They doubled in a month. I’ve read that tumor markers don’t mean anything so why do drs use that as a diagnostic or determining factor?
It really discouraged my MIL when she was told the markers had gone up so much in a month. She said she felt depressed and had a rough few days. She sleeps a lot and tires easily as it is, so this news just made it worse. She has trouble keeping her dinner down sometimes and her swelling can be a nuisance. She has seen a reduction in the amount of swelling in the past day or so (yay!) with consistently taking her diuretic and keeping her feet up. She’s had a good day today and said she felt better all the way around which was good to hear!!
Hi Hopeseeker,
Glad to be of help as always. When your MIL is on the diruetics, is she going to the toilet a lot? Just wondering as trying to understand if they are working as they should. My mum is on them just now for her heart issues as they think she has a lot of fluid that is affecting her heart and breathing etc, even worse than usual! She had swollen feet and ankles and that has gone down with the tablets but for a few hours after taking them she is in the toilet ever 15 minutes or so.
I would def speak with the doc/onc about the diuretics and see what they say about it all. And glad to hear that she does not have ab swelling.
No wonder your MIL is a little discouraged right now and that I would say is to be expected and who can blame her either really. None of this is easy to deal with for all concerned and I know how grateful that she will be to have you there with her as she goes through it all. Don’t give up hope and know as well that you are doing a great job for your MIL.
Hugs,
Gavin
Gavin,
Thank you so much for your input and for the links. I looked at them all and found them helpful. She has a diuretic to take but it’s not helping. Maybe a different one would be more effective? She does not have the abdominal boating or swelling though which is a very good thing!!
I was speaking with my MIL and she feels maybe the swelling is due to the tumor and poor liver function, but she (and we) hope that’s not the case. Her tumor markers were up at her last appointment 2 weeks ago. We are hoping they are down at her appointment next week since she’s been on her new chemo for a while.
She is a little discouraged I think, but trying to stay positive. We are just going to have to see what the dr says at her next appointment. She says she feels very good other then the swelling and the hand foot syndrome that is only effecting her feet so far. I feel maybe the dr can give her something to help with that or maybe lower her dosage if Xeloda. She’s on 500mg pills 4 in the am and 3 in the pm – 3500mg a day.
I sure appreciate everyone’s help and tips. Also just the kind words and support are very welcome and comforting.
Hopeseeker
Hi Hopeseeker,
Got some links for you here and I hope they will be of use to you and your MIL.
http://chemocare.com/chemotherapy/drug-info/Xeloda.aspx
https://www.gene.com/patients/medicines/xeloda
From the boards on the site – http://www.cholangiocarcinoma.org/punbb/search.php?search_id=659115364
Yes the swelling and the bloating could well be ascites and they are very common with this cancer, mt dad had them as well. There are loads of postings on the site about them from many people. Diuretics could be tried and they can also be drained as well. Some links here –
http://www.cancerresearchuk.org/about-cancer/coping/physically/fluid-abdomen-ascites
Hope some of these are helpful to you and let me know if I can help more as well.
My best to you and your MIL,
Gavin
When Rich was on his chemo of Gem/Cis his legs and ankles would swell up and his Dr put him on a diuretic and had him wear compression socks. He did say the socks took away the pain of his feet and legs being swollen. Maybe those would help her to.
Hi Hopeseeker- My husband just finished four cycles of Xeloda and will be on it again soon for chemo/radiation. He had moderate Hand-Foot Syndrome but not the swelling that you mention. However, I do remember the oncologist asking about foot or leg swelling and doing a quick “patdown” of his legs during exams. Sorry I can’t be of more help but it did seem like it was something they wanted to know about. Best wishes for your MIL, Tilly
Mary– My husband experienced the loss of fingerprints you mention. Same issue with his phone! I found an article on this in PubMed and will post elsewhere in this section.
Gavin,
Thanks so much. I’ve done some searches on here, but not coming up with much. I know at one point her dr told her the bloating and swelling were just part of the symptoms she will face in her condition.
She does try to put her feet up and drink water. She says she feels really good, but she is tired of course ad naps on and off during the days. She’s not overly worried about the swelling so I guess I shouldn’t worry either, but my drive to know and understand pushes me to search and try to find answers to what’s going on exactly.
I was just trying to see if maybe she could do or eat something to help relieve the swelling some, but maybe she’s already doing all there is and it’s just part of the process.
Thanks again,
HopeseekerHi Hopeseeker,
have you had a look around the chemo board for peoples experiences and stuff? I know that there will be some stuff on there and also the search forum function at the top of the page will throw up any relevant discussions as well. Can’t help with any personal experiences as my dad never had it but hoping other can chime in here.
My best wishes to you and your MIL as well,
Gavin
Dear Hopeseeker,
Your MIL sounds like a lot of people I know in her wanting to tough things out and not bother the doctors.
I am kind of the same way, but with the chemo I decided I didn’t want to take any chances and I did check in with the nurses when anything came up. They never minded and usually I got good tips about how to manage, plus the peace of mind that nothing was going wrong. These medications are very strong and it is important to keep an eye on their effects. Your MIL is very lucky to have you looking out for her.
A friend of mine made an observation about being on chemo: “Something doesn’t feel right and I ask myself, ‘Is it the chemo? Or is it the cancer? Or is it that I am getting older? Or maybe I am coming down with the flu?'” In other words, you can feel unwell but be reluctant to call the doctor because side effects can be nebulous and could be other things.
Apologies for my having no good answers on swollen feet. The only advice I am aware of is to prop them up, so I am also hoping others post on this. It might be good to check that her discomfort is not due to onset of hand-foot syndrome, which is usually redness and soreness rather than swelling.
Regards, Mary
Mary,
Thank you for your input. She doesn’t like to bother her dr or nurse at all. I have had to call several times to let the nurse know some side effects she was having. She is one to just suffer through the side effects and said she is getting used to the swelling. She said she has slight hand foot syndrome but it’s not bad. She is a tough woman!
I was just curious if anyone had any suggestions that I could pass on to her. She’s trying to drink a lot more water, but that’s not helping much. She really hasn’t had a terrible time with side effects and her first round was fairly easy on her.
Hopeseeker
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