Ingrid, I can’t speak from experience yet as my first chemo appt isn’t until Friday, but you seem to be on a fairly high dose there so could be some room to reduce it. My onc said it can take a bit of tweaking to get the right dose for you, so let your unit know if you’re struggling.
Hi Gail
Thanks for your response.
My Macmillan nurse came to see me today. Really good chat about all positives etc. I realised part of tiredness is depression (the C, new treatment, giving up work etc). She advised me to talk to my onc as my main torment is not being able to go on family holiday to Canada on 1st Aug, meant to be last big trip with kids while they still want to travel with dad & stepmum, they’re 20 & 17. Onc phoned me back within 5 mins & said no problem delaying a cycle & they’d review my dose in clinic on 9th July.
So all in all feeling much better than yesterday. Plus I am now 6lbs lighter so every cloud…
Ingrid
Sorry Gail - forgot to add good luck for Friday & everything crossed for your scans.
Ingrid
Hi Gail,
Wow you seem to be on a high dose to me. I was on 2300 twice a day and had a 25% reduction as side effect were just to much that was on the second cycle… I also had a chemo break to go to New York with my children and never had any problems when they came to scan me.
I now on a maintenance dose which is 1650 twice a day but if the fatigue get any worse I think I’ll have to ask for another reduction which my oncologist has already said would be fine. I’ve leart to be as honest as I can and if I’m not coping then I can always phone them up.
Glad you’re feeling better and have a superb holiday in August which isn’t that far off.
Take care
Love
Chris xx
Good luck Gail fior Friday hope it all goes well. x
Oops pressed wrong button! x
Hi everyone!
hope you are all getting along ok,
Half way through second cycle and about to start rads on spine tomorrow.
Been feeling very tearful today, I will be better tomorrow just a down day today.
Its my daughters prom tomorrow, I suppose I am just hoping I will be around for my son’s prom in 3 years…
Cap hasnt been too bad. Feet a bit sore but I have been creaming them twice daily. At night I pop my feet in little plastic bags after creaming them pop my sock over the top, it seems to be stopping them from drying out and cracking.
I have encountered the big D a couple of times but managable se’s really.
take care all
Rachel x
Well it’s 9pm & I haven’t crashed out yet…that’s my positive for the day!
Rachel - I love the image of you with fully creamed feet & plastic bags…made me smile 
Ingrid
Today’s top tip from SBCN. Gel insoles - pop them in the freezer until they are nice and cold then pop them in your shoes. Asda have got some for around a fiver.
Laurie
PS: they’re also good for migraines although you look a bit weird with a shoe liner on your forehead LOL!
Hi
Havent posted for a couple of months although have a look in regularly. Finished my first set of 3 cycles last week and had the results of my first post diagnosis scan on Tuesday and hooray!!, the tumours on my liver, lungs and axilla have reduced so I am all keyed up for the next cycles. I am on cap and lapatanib, but after my 2nd cycle I had a weekend away with my oh and after doing too much walking, hot weather, I had a lovely selection of awful blisters on my feet. So for the 3 rd cycle my onc reduced me to half dose and an extra week off to help them recover. They have got a lot better, so after the good results from my scan my onc has left me on half dose of 950mg x 2 per day and she said this dose will have no detrimental affect on my tumours and will protect my feet from the blisters.
I know this has been great news and after a very stressful week, a fantastic relief, but I cant seem to get my head in sync with my boday and ive been having terrible muscle pains around my midriff and sides all week. I think the stress has been worse than I first thought, although I was told after my blood tests that my potassium levels have dropped ( probably not eating properly), and I am on supplements and I will have another test tomorrow when I go for my chemo tabs.
This stuff really messes with my head sometimes, and even though the news was brilliant, I cant seem to pick myself up as well as I should be.
Oh well, moan over,
Alesta, dont lance that blister as I was told that it could increase infection, although mine broke when I took the plaster off it!
Anne xx
Hi
Havent posted for a couple of months although have a look in regularly. Finished my first set of 3 cycles last week and had the results of my first post diagnosis scan on Tuesday and hooray!!, the tumours on my liver, lungs and axilla have reduced so I am all keyed up for the next cycles. I am on cap and lapatanib, but after my 2nd cycle I had a weekend away with my oh and after doing too much walking, hot weather, I had a lovely selection of awful blisters on my feet. So for the 3 rd cycle my onc reduced me to half dose and an extra week off to help them recover. They have got a lot better, so after the good results from my scan my onc has left me on half dose of 950mg x 2 per day and she said this dose will have no detrimental affect on my tumours and will protect my feet from the blisters.
I know this has been great news and after a very stressful week, a fantastic relief, but I cant seem to get my head in sync with my boday and ive been having terrible muscle pains around my midriff and sides all week. I think the stress has been worse than I first thought, although I was told after my blood tests that my potassium levels have dropped ( probably not eating properly), and I am on supplements and I will have another test tomorrow when I go for my chemo tabs.
This stuff really messes with my head sometimes, and even though the news was brilliant, I cant seem to pick myself up as well as I should be.
Oh well, moan over,
Alesta, dont lance that blister as I was told that it could increase infection, although mine broke when I took the plaster off it!
Anne xx
Hi, hope others don’t mind me barging in here, to pick a few brains.
The reason I’m posting is that I’ve just been put on Fulvestrant as a last ditch go at endocrine therapy - but frankly, it looks like I might be heading for Capecitabine very soon. I was on Letrozole for two and a half years with no progression at all, but after a bit of recent progression to the spine (at C2 vertebrae), was switched me to Exemestane two months ago - but unfortunately the Exemestane doesn’t appear to have worked because there has been more progression to nodes in chest and neck I should add in case this seems rather bleak that there has been some good news, because it seems that what they thought was a lung met, is more lilely to be an enlarged para-aortic node -if you can call that good news- and there is no further progression in the bones.
I guess the questions I would like to ask are, has anyone had success with Fulvestrant following the failure of Letrozole and Exemestane?
Do the SE’s of Capecitibine get in the way of normal day to day stuff - e.g, shopping, looking after grandaughter etc?
Marif, had your endocrine therapy failed when you started Capecitibine? If so why did they keep you on it at the same time as Capecitibine?
Anne - you moan away - we all understand what you’re going through. Tomorrow morning though you must look at yourself in the mirror & think about what you have achieved. I’m only on day 10 of cycle 1 & hope I get the same great news as you in 3 months. But I know what you mean about all the nagging doubts that don’t go away. It’s an old cliche but the seize the day.
Lemongrove - what I’ve learnt this first cycle is they don’t necessarily get the dose right first time for an individual as it’s a crude calculation based on height & weight. But our bodies (enzymes) respond differently. Be prepared for the main symptoms (tiredness, nausea etc). Then review with onc if impacting quality of life. I’m feeling slightly better on day 10 as my body seems to be handling drug better but I’ve been forced to give up work. By day 5 I was able to do short trip to shops & fingers crossed I’ll make it to Top Hat at the theatre on Saturday thanks to a girlfriend prepared to drive me into Central London.
Hope that helps girls. Enjoying a pleasant evening in east London sat in the garden with my boys (OH & stepson)
Ingrid
Hi Lemongrove (and everyone) - I’m a real anomaly in terms of treatment: started an AI (Arimidex, then exemestane) and capecitabine (and tablet bisphosphonate) in 2003, when I was dx with bone & liver mets. Over the years, oncs in the UK (mine included) have changed their views about prescribing both an AI and a chemo at the same time, but my onc didn’t want me to stop either one or the other, in case it was the “wrong” one. So, I’m probably the only person here on both; of course, this means no one knows which (if any) of the two might be keeping me going so long.
After all those years of being the Xeloda Queen here, my onc took me off the capecitabine & bisphosphonate a few weeks ago - I’ve become anaemic, and he wondered if my long-term use of these treatments was having a detrimental impact on my kidneys, which don’t seem to be doing what they should to trigger my bone marrow into producing red blood cells. The main cause of my kidney disease/failure is Type 2 diabetes (I also have retinopaty & a bit of neuropathy now too), but onc is now concerned that there might be something else going on there; had a GFR (kidney function) blood test this week, closely followed by a call from onc’s secretary to tell me he’s ordered a kidney ultra-sound scan. So . . . more to worry about.
As for quality of life on capecitabine, I worked full-time for many years (managing sections of a large regeneration programme) after my mets dx. You keep your hair, but you might have some digestive problems . . . the main impact is probably hand/foot syndrome, which seems to affect most people on this treatment. Creams, creams and more creams . . . and crocs with socks (Belinda’s great solution) and more creams - have a look at the posts on this thread for loads of other suggestions.
Laurie - rushing out to get gel soles for the freezer (doesn’t that make them rock-hard??) as they sound wonderful. Have to remember not to eat them . . .
xxx
Marif, Mildred/Belinda, thank you for your answer. Marif, maybe your Onc has hit on something? I think it’s probably fair to say that most cancers would have become endocrine resistant after eight years, but maybe the addition of chemo has prevented your cancer from making the cellular changes/mutations that would enable it to circumvent endocrine therapy? Hope the anaemia resolves soon.
Just added a message on the bone mets thread before I came here so will duplicate here.
Hi again L, just my experience but I didn’t try Faslodex as I wanted something to kick in quite quickly to, hopefully, stop any progression. This is my first chemo, was diagnosed stage 4 from the beginning, so was lucky not to have to have the usual protocol of chemo at my hospital. I’d had 18 months of Tamoxifen, approx 3 and a half years of Arimidex and Exemestane didn’t work at all, came off it at 3 months. I know and meet Marilyn as often as possible…we live quite a distance apart but knew what success she’d had with Capecitabine so I really wanted to give it a go. I’m on 2x2000mgs a day.
Re: gel insoles. They go cold but not hard. Put the soft sides as opposed to the gel together in a bag or the plastic they came in. If you put the gel bits together they tend to stick!
Hi girls my feet are peeling like mad apart from bucket loads of cream any tips pls Laura
Hi Laura,
I don’t know what cream your on but when my feet were really bad I brought Flexitol the balm not the moisturise. it looks like vaseline and really did the trick. I can’t fet it on prescription but I heard you can in some areas,
Good luck and I hope you get something to stop the awful peeling.
Love
Chris xx
opps hit the button twice!
Flexitol is great, and I do get it on prescription (in a huge white tube, not like the ones you buy) - also the Scholl one for cracked heels, but unless my feet split I go with loads of udderly smooth.
My only other tip would be to try to avoid the temptation to pull off any loose skn - in my experience it always ends up creating sore areas.
Jx