have just heard that I will start 4 x epirubicin followed by 4 x taxol at two weekly intervals. Will start on the highest dose of antisickness (level 4?) as I am very prone to throwing up! (one of my charms!) so hoping that helps though likely to make me dopey I know. I am trying to be open minded about it all and will take it as it comes as I appreciate that everyone is different but would love some input from you experienced ladies in a decision I need to make. It’s quite trivial really but I could start chemo this Friday which I immediately agreed to as the sooner it starts the sooner it finishes, however, on reflection, I am wondering if delaying until Tuesday might be better. My reasoning, probably flawed, is that I would rather be feeling better at the weekends than during the week. I thought this might impact less on the children (teenagers!) but maybe the effects are not immediate anyway and a Tuesday session would have effcets right through to the weekend anyway.
Any advice would be appreciated…I am aware that I am probably being naive and as I am less than 5 weeks on from mx and immediate ld reconstruction I’m not working on all cylinders yet. (Actually yesterday’s saline injection has left me feeling overstretched and inflated but I’m sure that will settle!)
Hello Lee,
I start Epirubicin tomorrow. personally I cannot wait to get it all started. If I was told that I now had to face a delay I think I would be a bit annoyed. Also, it seems to be difficult to predict when exactly effects kick in for each person.
I am hoping to go and see a play I have really been looking forward to on Friday night. So hope effects don’t start till Saturday otherwise I may not be allowed in to the theatre with my bucket…
You will make a decision you are happy with. Good luck to you, will be thinking of you. Wish I actually had something practical to say to help. Just want to pass on good wishes really.
hi,
i had my first epi on fri 3rd july and pretty much wrote off the weekend! I was much better by monday and even went kickboxing in the evening and the rest of the week felt completely ‘normal’ again - went on a big night out on saturday (day 8) and a ten mile hike in the pennines yesterday (day 10). I’m sure this won’t always be the case as i continue with treatment and obviously everybody reacts differently. I felt it was the steroids that were really affecting me in terms of fatigue and foggy-head, but only had to take them for the first 48 hrs - as you are on a high dose though you may have to continue with these for longer.
Hope this helps, but like i said i guess we all react very differently, sometimes you sit there expecting the worst and its really not that bad at all…i hope the same goes for your experience.
x
Sheils, good luck tomorrow. i know what you mean about not wanting to delay things, exactly why I said I would start Friday but I have stuff I need to do Saturday too so that was my concern. Let’s hope you make the theatre minus bucket! We can’t stop all plans “just in case”.
Pixielox, nice to hear from someone just that little bit ahead. it’s very reassuring to hear the things you are able to do. I know that everything is cumulative but at least that breaks us in gradually.
As I said I am just getting over my mx and immediate recon and only told yesterday that I can swim! Yeah! At least it’s something, really looking forward to getting back to pilates and long hilly dog walks (not 10 miles though…well done!) but they may all have to wait a while.
We are all different in our reactions and even expectations. I’ll just take it as it comes and I’m not a natural worrier so not going to get ahead of myself. I suppose I should start Tuesday if I really want to collect my daughter and her friends from Gatwick on Saturday…so the best way to here all the gossip of their post A level jaunt to Ayia Napa! (Poor Cyprus!). possibly best not to know too much…
Good luck to you both. We will be going through this together.
Hope the effects of your first cycle have’nt taken too much toll on you sheila. I’m day 13…first 2 days were tough but then picked up…seem to be flagging a bit since yesterday but not sleeping so good so perhaps that has more to do with it than the effects of chemo. Starting to loose some hair now…just bits but thats had an effect to.
Lee - Think i may have overdone it with the 10 miles…was aching for 3 days after! But it does help keeping fit and active as much as possible…also i would hate to succumb to jeremy kyle cos of boredom!!
Have you decided on the ‘big day’ yet?
xx
Well I had first Epi yesteday. The actual process was not a prob, and know I can cope with that now. I have now passed the 24 hour mark and I feel fine! Went to get fitted for my wig yesterday and not sure what I think, in two minds about whether I will look better just with a scarf. Worry about that later…
Lee hope your session goes as well as mine did, be thinking of you. Pixielox, great that you have been so active. I will try to take inspiration from you!
I’ll let you know how I am over the next few days, but Lee, don’t be too anxious, the waiting could be the worst…
yes, tomorrow is the day! Had all my pre tests today. Thanks, Sheila, for reassuring me. Not that I am worrying at all, just want to get on with it really but it is an unknown quantity so it’s really good to hear all your experiences. They let me try a cold cap today, just to get the idea. It didn’t seem so bad so I thought that I could probably do it. Then when the nurse took it off he realised that it wasn’t anywhere near as cold as it should be! Oh well, I’ll still give it a go tomorrow. Unlike you, Pixielox, I haven’t got a mass of hair, it’s short and fine so Iwon’t be very protected. Also I’ve been thinking how much more appealing swimming will be when I don’t have to worry about blow drying my hair! Every cloud!
Anyone else have thunder, lightening and torrential rain…it’s awful here…and I still have to take the dogs out!
Hi Lee, will be thinking of you today. Day 2 for me and still feeling fine. Just a little disturbed sleep last night, prob due to the steroids, but went back to sleep after a cup of horlicks!
Take care you will be fine. Oh, I wasn’t offered cold cap and didn’t see anyone wearing one in the chemo suite, so guess different oncs, different preferences… I am just gearing up to the hair loss and will deal with it!
first one under the belt and, like you, I didn’t find it a problem at all. I think I was the only one there in the unit today so ahd great attention! The only problem was trying to get a usable vein, it was third time lucky and that was after having my arm wrapped in a heating pad for 15 minutes! They even gave me a mint humbug in anticipation of the taste that the cyclophosphamide would cause in my mouth.
I decided not to use the cold cap in the end. My reasons being that even with a cold cap some of my hair would fall out, or “thin” as they euphamistically call it! Also it will fall out anyway when I go on to Taxol so what’s the point. My hair is quite fine so having it any finer really would be a bummer and I’d rather it all grew back and was at the same stage at the same time. Again, like you, I’m fairly philosphical about it all and not so bothered about the hair (secretly wondering if I might just find not having to keep my difficult mop looking good quite a relief! Maybe I’ll keep to wigs and scarves forever!) I understand that for many people that’s the worst bit. I am probably less keen to lose my eyebrows and eyelashes, popped into the local beauty salon on the way back from chemo to enquire about eyelash options!
Anyway, feeling fine so far, though tired (they really wacked me with the antisickness as I am a sicky person) am sitting in my bedroom with my feet up TV on surrounded by dogs and cats(not on the bed!) and not feeling guilty! Have eaten alunch which is better than most days and trying to drink lots if only to see the red pee!
Hope you continue to feel well. Love your sign in name, by the way. We should all do that more (if we can find old ones that actually do smell of something!)
I’m prattling…time to go.
Pixielox…hope things are picking up for you. I know your hair is very important to you and this must be a tough time, not going to make any patronising comments all of which you will have heard but big hugs, thinking of you. You’re in Manchester aren’t you? My eldest daughter, Sophie, is coming to Manchester Uni in September, having given up on Durham after one term as she really didn’t like it. Fingers crossed for Manchester, I’m sure she’ll love it.
Hi sheila and hope,
Made the decision today to ditch the coldcap and go for bald on my 2nd chemo next friday, so to read these two posts has just made me feel tonnes better that you are both so positive about it. Started to lose strads of hair at the fron now (which is the bit where i thought it may have worked) so although i may be lucky and it could just ‘thin’ i think you are right hope when u say you would prefer it all to grow back at the same rate…it would look odd with dreads and tufty bits - and i’v always been so proud of how tidy my dreads are so it would probably ruin them anyway!
Glad its so far so good for you both! Watch out for day 10 onwards…just found out why i’ve been tired and breathless these last couple of days…it seems my red blood count has dipped but thankfully its nothing serious - its the white ones to be weary of!
Have a good weekend…as best as can be expected anyway!
xx
im a bit in front of pixie i just had my 2nd epi on thursday… feel a bit tired but not sleepy (thanks to the steroids methinks!), have a dry furry tongue and food is a bit tateless unless its spicy, fruity or fizzy… so living on chilli, curry etc as well as friut sweeties like randoms or jellys or allsorts and fizzy juice… not feeling sick which was my biggest worry.
my hair started to come out on day 14 was mostly my downstairs that went first and just the odd stray from my head… i also started to feel a bit lousy then and my bloods came back with a neutrophil count of 0.16 which is very low… so pixie this is maybe whats happening with you too…
head all now nicely shaved and the nasty pin prick feeling had gone.
lee im also triple neg but wasnt offered a taxane despite repeatedly asking to have it so im on the same as pixie which is epi-cmf, i was told the cost to me as a person was too great… but me as a person would rather suffer just now than worry about it returning again in the future (this is my 2nd bc in 3 years).
i hope sheila and you are coping ok after your 1st cycles
Hi Pixie, Sheila and Lulu (who obviously didn’t sleep too well last night judging by the time of the post but is looking great!)
Sadly for me I do feel sick, haven’t been sick though, I had really high doses of antisickness as well as steroids which should help and everyone was confident that I would be okay, and it’s not too bad but certainly a bit limiting. Otherwise tired and sleepy now, that would be due to a poor night’s sleep, eventuaaly gave up at 5 …my chickens couldn’t believe their luck at being let out so early! Never thought about the cockerels crowing even more loudly outside! At least I don’t have very close neighbours but it is Saturday morning…
Yes, Lulu, the triple neg thing plus I was a grade 3 cancer so they are hitting it hard even though my lymphs were clear, belt and braces seems to be the common phrase used. I am also having the accelerated treatment which is every two weeks instead of three and has given good results. This is possible because of an injection to stimulate white blood cell production which gets the count up quickly enough for the next session, I have to administer it myself today in the abdomen, wish me luck! Intense though but at least I get through it more quickly. Are you still managing to work,Lulu, all of your travelling to and fro sounded really tiring for you, amazing that you can contemplate it really. Strong woman! Here my dogs were hopeful of a nice long walk which at 7 I thought it was do-able but now everything has hit and I doubt I would make it up the hills, maybe later.
Pixie, good on you for taking the positive route with the hair, your pretty face will shine through I know. I will look out for the blip at 7 to 10 days.
Glad first chemo went well as can be expected Hope. I am on FEC so got the same E as you! Red wee went after 24hrs! My husband is from manchester- great city now! Really good for shopping!
Pixie my hair is falling out in droves but therer is still more on my head than the floor so no shaving yet! I have got the serious heebie jeebies tho about it and didnt atticipate being bothered…boo. I think its because you cant forget about the cancer then as its such a big physical change.
Lulu your new photo is fab. You are much braver than me! I think i may hibernate till i get used to it. Got huge family wedding in 2 weeks so not good timing as got fab dress but not sure bald head will look good!
going to a big two yr old party soon on a farm…carnage i guess!!
have good weekend
Hello girls, hope you are all managing to keep spirits up despite the rotten sickness and hair loss.
I do feel in a very wierd limboland, waiting to see what the next week or two brings and feel the temptation to stay in my nighty and keep the doors shut. But I know that won’t help and go out for a walk and to the shops each day.
I agree about the limboland Sheila, but did you feel so spaced out at my stage…had my first ec on Friday. Not sickly now but just not quite with it. Just tried to drive to the village shop for a newspaper and felt out of it so quickly came back…no casualties!
Good luck with the party Sue…I’m sure it will be exhausting! I have a big wedding on 14th August too that I would love to be at but it will be the day after my chemo so not sure I can do it. Dress all bought too!
Hi Lee, I do feel a bit spaced out. I am opting to walk at the moment, don’t really feel quite right to go in the car. Lucky that shops all close!
Sheila x
lucky you being able to walk somewhere. We’re out in the sticks I’m afraid. Well, no I love it really but when driving’s a problem then it’s a pain. Just as it was being a taxidriver before any of my kids could drive. Anyway no need to drive now as definitely homebased with SEs. Feeling better to have decided not to do anything much. My daughter has returned from holiday with friends who have been diagnosed with swine flu…Great! Watch this space.