I am not, but hopefully other members who are about to embark on this course of treatment will feel a bit more at ease as well like you do.
Nice to hear from you. Yes I was in total shock back in August 2009 given that news. I was 57 at the time to be honest I did not think I would be here now. I had 6 chemo then put on Letrozole which I was 4 years then slight progression changed treatment to exemestane. They are hormone treatment. During that time I went on holidays Worked till 2015 31 hours per week. Looking back I was lucky to be stable for so long. I can understand you wanted to carry on working where life feels normal. Do you claim disability or PIP? By chance I asked my BC nurse last July whether I could claim disability. I now get disability Pleased I asked.
Hope you are feeling abit better.
Have a nice weekend.
I completely understand your last sentence, I’ve forgotten what normal is but I’d give anything to have it.
I didn’t know you were straight to stage 4, that is a long time to be battling this, it must have been tough for you but full credit to you.
Have you been working or did you give up? I have been terminated from my job this week as I have been given ill health retirement as my prognosis is poor according to my Oncologist. I’m gutted about work as I had always planned on going back. But hopefully I can use the pension to do something nice with my family once I’m feeling a bit better.
I spoke to my onc about reducing the steroids and he gave me some guidance but told me to go off how I was feeling so today I’m going to try without as I had got down to 2 mgs before chemo this week.
Hope you have a lovely weekend too.
That is alot of steroids to be on for so long. The hospital I attend don't like patients to be on them for so long I can understand now with the horrible side effects you are suffering.
Don't know whether you are aware I was straight to stage 4 breast cancer and bone mets at same time in 2009. Unfortunately it decided to spread to my liver 2017. Must admit it has been alot harder regarding treatments.
Are you reducing the dose yourself of steroids?
It would be nice just to feel normal instead of all this rubbish.
Have a lovely weekend l
I wish I’d have been on the same regime as you, he put me on 4 tablets (8mgs) daily for 7 weeks, then started reducing by 2 mgs per weeks. I’m down to 2 mgs now apart from the last 3 days for chemo. But the side effects don’t seem to be reducing. I’m now going to try alternate days of 2 mgs then none and see if that helps.
I see my Oncologist every three weeks the day before my new chemo cycle starts, I didn't see him so frequently when I had chemo last year, I think I only saw him once. I guess that’s what a stage 4 diagnosis does for you.
Nice to hear your side effects are not too bad, I hope that continues for you.
have a lovely weekend.
You seem to have been on the steroids longer than me. I started on 4 tablets daily for 3 days then 2 tablets daily for 7 days then 1 daily for 7 days then 1 every other day. At the end I was on 1mg every other day. Pleased I am finished with them apart from before chemo and day after. Only plus to them I have more energy.
Yes I agree I felt better on day of chemo couple days later then it is down with a bump. Really depressed.
Pleased you have date for scans. Have you seen your oncologist yet?
Think I have been lucky upto now with side effects. This cycle I seem to have joint aches feeling tired. Hope your mouth is getting better.
I am still struggling with the side effects, feeling very spaced out, weak legs and very swollen face and neck. I am down to 2mgs per day but I had chemo yesterday so it was bumped backup to 8 mg for yesterday, today and tomorrow. Strangely I have felt better today than I have for the last couple of weeks.
I have both chemos on day one, just Gemcitabine on day 8 then a rest weak before it starts again. I have a ct scan booked for 18th March which will be half way through my six cycles. I also have a spine and sacrum mri booked for beginning of April so fingers crossed there has been some response to the chemo.
i hope you are coping with it well, how are your side effects?
take care, Mandy xx
Just wondering how you are getting on regarding weaning off the steroids?
Yes I did see the post about the Manuka honey. Hope it works well for your sore mouth. Can't be nice when you are trying to eat.
I have just had cycle 4 chemo. Not due to see oncologist till 30 March when on that same day I will have my 6th one so hopefully they will arrange for me to have a CT scan.
I get both of my chemos on same day then 1 week off.
Hope you are doing OK.
Pleased you now know what chemo you are going to be on.
Regarding steroids you are given 6 in total 2 to take day after chemo then 4 to take at home one hour before chemo.
Do you know how often you will be having your chemo?
I have just had my 4th chemo today so my neutrifils must have OK. Must remember to ask next time.
I am not going to tempt fate but hair seems not bad seems abit dryer so don't seem to have to wash it as often. Normally wash it every other day. Now I leave it 3 to 4 unless I am going somewhere.
I've been following this thread ever since Linda started it as we both have had many treatments over the years and I wanted to offer my support. Over the past few weeks it has been clearer that I will also be starting a similar regime and I had that confirmed on Friday when I had a second opinion at The Marsden. So, as of next week I will be joining in the Carboplatin part of this combo and I'm sure some of the side effects will be similar if not the same. Because of this I wanted to ask a few questions about side effects and have already noted the mouth ulcers and tiredness (which seem to both go with a lot of chemos) so am a little bit more prepared. I was going to ask how your white blood cell and neutrophil counts have been. I've often been on gcsf injections to help and wondered if I might need to have them again. Also, has you haired thinned or fallen out completely? I'm still struggling with thin hair from Eribulin, my last chemo, so if it thins any more it might as well all fall out! Any other tips greatly received.
I have a couple of tips myself having read your problems with mouth ulcers. With previous chemos, known to give mouth ulcers, I have sucked on flavoured ice cubes whilst having the infusion. It was explained many years ago on here that this works in a similar way to the cold cap in that it freezes the mouth so the chemo doesn't damage it so much. Have no idea if there's any science behind this but it's worked for me. I freeze flavoured cordial and then put the cubes in a flask to take to the ward. Ice lollies or iced drinks can work as well. The other thing that might help (and this comes recommended by my husband who has suffered with mouth ulcers on and off for many years) is that you can now get mouth ulcer pastilles to suck. He says they have helped far more than gels or mouth washes maybe because you keep them in your mouth for longer? He bought his from superdrug and I'm grabbing the remaining ones so I can be prepared if I need them.
Well, here's to all of us getting some benefits from this chemo/combination and not too many side effects.
ps dreading the steroids though, and the coming off them each cycle. By the way how many days are they given? I understand before the infusion but not sure for how many days after x
I definitely need to talk to my Oncologist about my weaning off as I have been reducing by 2mg per week, next week I’ll be down to 2mg per day, he told me to do that for a week then stop. Your withdrawal sounds better planned.
Yes, I have two weeks of chemo then a weeks rest, I’ve just finished cycle 2 so a bit behind you. Have you seen the post on here about Manuka honey helping with a sore mouth? I have just started using that so I’ll let you know if it helps.
Thanks for your reply, I have just started taking Manuka honey although I didn’t realise it would help my sore mouth which is good news. Someone recommended it just for general well-being but if it helps my mouth that will be a bonus. I didn’t know it went on the 1p thing too, is that Holland and Barrett’s? I’ve heard of that but not been in, I will do now though as I was shocked at how much the honey cost.
Thank you again and good luck with your treatment if you are having any at the moment.
Take care, Mandy x
I am getting weaned off steroids as well. Taking 1mg every other day. Finish them Friday. Back for 4th chemo on Monday so have to take steroids and anti sickness tablet an hour before chemo. Are you getting your chemo every 2 weeks? Regarding a sore mouth I was given Corsodyl by the chemo unit.
Yes it would be great to be on a kinder treatment
Yes it's not easy when I have been used to taking hormone treatments last year.
Pleased your treatment is going well. Do you mind me asking do you get a CT scan every 3 months?
Hi Mandy, read about your sore mouth, which I know from experience can be awful. I wondered if you’ve ever tried high strength Manuka honey? I was on FEC-T which can be a bit of a nuisance with mouth ulcers, thrush etc but once i used this every day I’ve been great. Been using it for three years now. Only buy it when it’s in the 1p sale otherwise it’s ridiculously expensive. Good luck to you and Lindylou, it sounds a tough treatment. X
Thanks for reply, yes the tiredness is awful, although I’m not sleeping well either as I’ve been on steroids for almost seven weeks. I’m slowly being weaned off them but it’s taking time and lack of sleep is the biggest problem.
Hopefully, we will be a good response to Gemcarbo and can move on to something a bit kinder.
Have a good day,
Nice to hear from you..
Yes constipation was really bad 1st cycle. Chemo unit give me some tablets called dioctyl 100mg. I started taking them when I came back from having chemo. It really helped me for 2nd cycle. Yes I do try to drink alot of water as it can affect kidneys. Feeling tired is awful. Normally have quite abit of energy.
I’m on this, I am just on the rest week of my second cycle. The worst side effects I have had are constipation and a sore mouth which is awful. I have been given Difflam mouthwash but it’s hardly touching it so I’m going to contact my GP today to see if they can prescribe something else.
My bloods and Neutraphils are dropping too which I believe is common so I’m trying hard to rest as I don’t want any delays in treatment. My advice would be to drink as much as you can to flush it through your system and rest as much as possible. I hope it’s kind to you.
Take care, Mandy x
Good luck, Lindyloo, with your new treatment. Always a worry but your medical team will be doing their very very best for you. 🤗
Thank you for info was not aware it could happen.
We get stuck on treatments don't with not enough info. If it was not for the forum we would left in dark.
Once again thank you.
Hi Linda, all I know about this treatment you are on is that it can cause nutrapenia so take you temp every day.
Thank you for your reply much appreciated . It is awful when treatment gets changed Hope whatever treatment you are on is going well.
I am not on this treatment and do hope others will let you know their personal experiences.
I just wanted to wish you all the very very best with it.
Lots of love to you xxxxxxxxxx
Hi just wondering if anyone is on this treatment. Just started it yesterday.
Any help or advice would be much appreciated.