Sept 2022 chemo starters


Hi Lisa,

you’re right, we just adapt and accept things we probably never thought we would. Cancer gives us a new tolerance level.

i know my symptoms are not as bad as some people and I’m still able to work and live (altho loperamide, wipes and mapping toilets is a new part of my day). When its every 6 days or 3… at least you can plan so I would be ‘happy’ with a pattern but hey ho, none of us chosen to be here or many aspects of our care so it is what it is…

There is a trial called TRACKer which performs regular bloods for cancer markers and starts meds when early signs show markets increasing.

i think theres another called NATALEE (i think) giving ribociclib instead which seems to have less diarrhoea symptoms?

i did ask if I could be causing harm taking meds before I need them-should I do TRACKer instead? The recommendation was to take, try to reduce recurrence rather than wait and take when needed.

i also wondered if it made it harder-if cancer returns/spreads, where do I go next because I have now used the next stage med? Advised, i would not be able to have ribociclib etc but they would look at alternative at that stage…

so, on we go


Hi Laura,

Amazing how adaptable we all are. I hadn’t thought about the fact that taking the meds now may make it difficult if the cancer recurs. That’s a bit unnerving. Hopefully they have lots of whizzy new meds in the pipeline.  Hope you have got on ok with the side effects this week. My white blood cells seem to be a bit down, but hopefully I’ll be able to continue.

All the best

Lisa x

How are you feeling @Aliwoo82  after radiotherapy? Did it tire you out? I hope your DD has recovered too. 

Im at a low ebb with Capecitabine. My feet have blistered and my hands are sore so I’m on a break for an extra week off treatment. I’ve still got 4 cycles over 12 weeks to go though once I’ve recovered enough,. My bloods are fine and I’m otherwise well luckily!

Hi Nancy, apologies for not replying earlier - I’ve been enjoying a bit of normality and finding things to entertain 2 pre-teens during the summer break!

I felt ok after radiotherapy - I was tired for a couple of weeks, but about 3/4 weeks after radio finishing I woke up feeling ‘normal’ like I remember feeling before I found my lump. This had only improved, and I’m pleased to say I’ve survived 3 nights away in Manchester doing lots of walking with the family without feeling anymore tired than they do, or I would have beforehand. I now can’t wait to get back to work for some more normality, although I’m sure I won’t be saying that this time next month! Lol I’m still struggling with my heart on phesgo and have been given 2 more tablets by the cardiologist and am having my echo every 6 weeks instead of every 12 to ensure it doesn’t get worse

Hope you’re all doing ok and beginning to enter some normality too xx

Hello all,

Just popping on to say hello, and hope you’re all ok. I’m finding myself a bit weirded out with coming up to the anniversary of being diagnosed, and slightly apprehensive about the impending BSO surgery (thanks mutated BRCA gene) but mainly I’m trying to enjoy feeling a bit more like myself and not worry about every little twinge!

I also hate the new forum format, seems really confusing having the newest messages at the bottom of the thread and I can’t find anything…so not feeling as inclined to log on!

Anyway, hope everyone has had a good summer & is feeling well.

F :heart:

Hi LD2022,
Also started today with EC (4 cycles) then 9-12 injections of Taxol. So far so good but am sure am going to feel it in the next few days… apparently nausea will be the worst 48h in. Was feeling very apprehensive earlier today but now just glad it has started. One down!

Louise have you got the right year for your post? We all started treatment a year ago and are mostly through now. Good luck with your chemo!

It’s so confusing!
I have had a quiet summer due to being on Cape oral chemo but I am almost done! Just six weeks left now and I am feeling quite well apart from the lack of energy. I am airing for a bone scan for a painful shoulder but that actually predates my cancer so is unlikely to be related ( crossed fingers )
All the best to you all

Hi everyone, just wondering how you are all getting on. I’ve officially started back to work, but since I’m a freelancer, that means I’m not doing much until I build my work back up. I"m feeling quite tired on the abemaciclib and letrozole so not yet going full tilt and not sure I particularly want to go back to that. I’m feeling that I will need a few more months to build my strength back up. Is anyone else feeling this way? I’m 51, so perhaps it’s just a being in your 50s sort of a thing! from time to time I freak out about the threat of recurrence, but manage to talk myself down and worry about other smaller stuff instead! :grinning: Hope your bone scan went well Nancy and your surgery was ok, Faye. Take care, all. Lisa x

Hi @bearcat Im glad I’m not the only one still on treatment. I decided to get my shoulder sorted out with a physio as I still haven’t heard about the bone scan. Two sessions of laser treatment and massage and it’s nearly better already.
I see recovery as a project to be managed. I need a new hip soon so am off to see the consultant next week. I intend to start some Aquacise classes once I finish the pills in three weeks time.
Meanwhile I’m about as energetic as a wet paper bag…… work would be impossible on Cape.

Hi Nancy, the treatment does seem to go on and on doesn’t it. I love the wet paper bag analogy. That about sums it up! :grinning: x