Bile duct cancer

A support group for anyone affected by bile duct cancer to come together, share experiences, and ask questions.

about to begin gem / cis for stage 2 cholangiocarcinoma - any tips to prepare and what to expect/ plan for

lw85
Posted by

Hello my mother is a fit and well 65 year old - diagnosed only 6 weeks ago incidental asymptomatic with initially stage 1b cholangiocarcinoma ( solely due to size 8-9cm) but pet/ct/mri no local infiltration/ mets. planned for surgical resection unfortunately had to be cancelled as upon begining identified nodes on the right liver lobe ( as well as the large left liver lesion). 

we are now due to cis gem next week. option 1 so once a week chemo then 13 day break... 

Can I ask whether anyone any tips for preparing for gem cis ? we want to plan fun things to do with her but wondered what time in the cycles were best for activities like theatre trips, lunches, spa, Orient express etc? 

best things to eat?

best anti sickness?

which days were the worse in the cycle 

what did you do during your chemo 

thank you 

rily
Posted by

Hello . I am not from this group and don't know much about your mum's condition, but I noticed your post. I had gem/cis for my bladder cancer. Gemcitabine one week, followed by Cisplatin the following week alternating. Your mum's cycles may be different. We know different people have different reactions to chemo. I didn't really have a problem with it, but some do. Mum will be given anti sickness tablets by the nurses. It is important to take these as prescribed as they are designed to prevent nausea, rather than stop it if it happens. A good mouthwash to be used regularly to help prevent mouth sores. On the day of treatment, mum needs to wear loose and comfy clothes as it can be a long day in the chair or bed. Lots of snacks and drinks. Something to keep her occupied such as a book, ipad etc. As regards activities, I would play it by ear to see how she feels. The main side effect whatever the chemo is fatigue. This just knocks all the energy out of you and you just want to rest. Just let mum be aware that chemo lounges are usually friendly and upbeat and not all doom and gloom as you may expect. When at home, make sure she keeps well hydrated by drinking water regularly. Hope this helps slightly without overwhelming you. Best wishes.

Best wishes to All,   rily.  What is a Community Champion ?

Picnix
Posted by

I'm 56 and like your mum pretty fit and healthy. I'm about to start cycle 6 of 8 of gem/cis. I have 3 week cycles with both drugs being given each week and then a week off. I've found it very manageable, I have been continuing to work up and riding my bike until a couple of weeks ago when fatigue became overwhelming. Blood tests showed I was anemic and needed and blood transfusion. Following on from the transfusion I have much of my energy back again. 

best things to eat?

I avoid heavy dairy items, they really don't help with nausea and I also struggle a bit with bread so limit my intake. Other than that I eat pretty much what I fancy just not to excess. 

best anti sickness?

I am provided with anti-sickness drugs. Ondansetron for on the day of chemo and a couple of days after and Domperidone for the rest of the time. As rily says as long as your mum sticks to taking it as prescribed it should keep any nausea at bay. I suspect the ondansetron is more effective. I also have dexamethasone (a steroid) on the day of chemo and for 2 days after, this also helps with nausea and improves appetite (and weight :-)) 

which days were the worse in the cycle?

Day 1 is tiring so I don't plan anything for that day but day 8 in my cycle is probably the worst. I feel a reluctance in my legs to walk down the corridor to the chemo unit. I'm always pretty worn out that evening and just want to lie around and be looked after. Day 9 and 10 I also feel pretty tired. 

what did you do during your chemo? 

My treatment takes about 3.5 hours so I take a book and some bits to eat. On day 8 I try and have some company because I find it a difficult session but the chemo unit is a friendly place and usually you can chat with the person next to you. 

I find the week off treatment is the best time to plan outings that will use a lot of energy. 

LovingM
Posted by

Thank you, Picnix

My husband had his first chemo treatment yesterday. Gemcis, like yourself, and he has been prescribed the same drugs to take for a couple of days. The only difference seems to be that his treatment is took 7 hours (4 hours of fluids to protect kidneys)

Today he is absolutely fine, so I was interested in finding out when it might "hit him"! Seems it might be next week that is more of a struggle. 

My best wishes to you. I hope you are making progress.