Hi Ladies,
Thanks girls foe your advice on starting Tamoxifen, I’m going to go away Sunday, come back Tuesday and start then. I really wanted to enjoy a few days away without any nasty side effects rearing their ugly heads. Of course I may not get any but its not worth the risk for a few days.
Saw the Rads consultant yesterday, won’t be starting for a couple of weeks until after planning etc. Def won’t be at the Marsden so back to Guildford for 3 weeks. OMG what happens then??? Feels like we are out on our own?? I do have an appt with the Onc in May but that seems ages away. I do also have a fab BCN so at least I can always speak to her.
Am sure I read somewhere that after treatment we are given CT scan to check all is ok, did I dream it, has anyone been offered one?? Would be reassuring. I keep thinking as I had no nodes involved and a huge tumour, has it gone somewhere else instead? Don’t our fuzzy brains work overtime??!!!
Loocie I am glad to say that there has been a definite improvement with my eye. Las few days have been a lot better, can actually wear a bit of eye liner and keep it where it should be!!
Everyone is sounding pretty good at the moment which is great!!
Love to you all, Jane xx
Hi all - hope you’re perky and bright?
Like you Jane I asked the onc’s reg. what investigations do they do in order to determine how successful all of the treatment has been, and was told none! It will be a question of investigating any lumps or bumps that may manifest themselves over the coming years if they should develop (what about the ones that don’t make themselves evident until it is too late???). I wasn’t satisfied with the answer and continued to press her, but she insisted it would be a question of watching and waiting. I see the onc cons. in May and will ask him, and hopefully he’ll offer me something more concrete. As you say, all a bit scary.
Started rads today - good luck tomoz Lynn 
It was really odd, as I still have pins and needles in my fingers and toes from the Tax, and after being fried, it felt worse for several hours…must’ve been psychological!
Also took the plunge and started Tamoxifen - hopefully it will do me the world of good as I’ve always been Oestrogen dominant, so fingers crossed it will be a good thing rather than the bad thing I’ve managed to build it into!
Nightee noooo to you all
Loo
xxx
Hey Ladies
…not posted for ages, but have been reading all your posts…glad the tamoxifen isn’t causing too many problems for you all. I’ve decided I’m gonna ask my onc for it after rads…want to throw everything I can at this crap!
Loo, love the new pic! Wish I looked as healthy as you!! I have the rough swollen piggy eyes still & am sick of people telling me I look knackered…they mean well…but I’m not so sure they’d be looking hot if they’d just finished 8 rounds of chemo & then been attacked by yet another dose of sinusitus! LOL
Feeling a bit down again at the mo…not sleeping isn’t helping…covers on, covers off, covers on, covers off!! Aaargh…think I might try some nytol or something if it doesn’t ease up soon. Any suggestions for a good nights sleep welcome :o)
I was at the lymphoedema specialist on Monday & he was lovely. Drew all over both my hands & arms & done lots of measurements before announcing that my elephant arm is 9.7% larger than the other! I’ve been given this really sexy glove (makes me look like I have a cheap prosthetic hand with real finger nails!!) and an even sexier full arm sleeve! But they do help, so I’ll persevere with them. I’ve to go for some japanese taping thing after rads & a bandaging course to see if they can boost the removal of fluid…I think they felt sorry for me when my eyes starting leaking after putting the glove on! The female physio gave me a cuddle & said ‘I know it’s just something else to add to the list isn’t it?’ & the wee man sat & rubbed my arm! LOL…why do you cry more when people are nice to you?
Anyway, I’m sure I’ll shake off my downer after my wee holiday with the kids. They’re so excited…you’d think they’d never been anywhere before!! House is a tip cause I’ve half packed…should really go & finish, but can’t be archied! I’ll do it later…maybe! I was s’posed to do it last night, but had lunch with the Edinburgh BCC girlies yesterday & didn’t get home till late!..ended up having lunch & tea in the restaurant! I always feel better after blethering to them for hours tho.
Well, I’m gonna go & drop my wee girl off at nursery & then have a go at Davina McCall’s fitness DVD…need to start somewhere…I swear I’ll be harpooned when I go near the water at Center Parcs! LOL
…apologies for the long rambling post :o)
…hope the rads are going well ladies…I start next Thursday
…and to the Chemo ladies…hang in there…it’ll be over before you know it!
Love to all
Hxx
Hays, sorry you’ve got yet another thing to deal with with the elephant arm, hope they can minimise it or sort things out a bit? Will it ever go away with time?
Hope you have a great time at Center Parcs - at least you’ll be able to go swimming having finished chemo and not started rads so enjoy it.
The only thing I can really suggest for not sleeping is sleeping tablets - ask your GP for Zopiclone. I only take them when I am really desperate (which is getting to be almost every night at the mo - flushes have returned due to tamoxifen). But I only need to take half a tablet a night. They really do help although I find it a struggle to get out of bed in the morning - not sure if that is the tablet or me just being lazy lol.
I’m off snowboarding at the end of the month - really looking forward to it as much as you are looking forward to Center Parcs. Hope we both have a good time!
take care
Helen.
I hope you both have a good time too, sounds wicked
I’m pleased my profile pic came out the way it did, as I need it to remind me I can be OK again, as now (five days later) I feel poop Had first rads and tamoxifen yest and have spent the day feeling quite queasy and so, so tired. In the end I had to take Motilium to stop me from feeling too pukey! Hope this doesn’t last and that I get a good sleep tonight. Like you H, I’ve been having trouble in the kippage dept. I wake up freezing cold in the morning (lived here for fourteen years and never been cold in bed). I’m usually huddled into such a tight ball my hips and feet ache - odd? It took me forever to get off to sleep the last two nights, but as I write this I can barely keep my eyes open - so here’s hoping I manage a good one.
I’ve heard about the taping idea and apparently it is amazing, so fingers crossed it works well for you too
Right off to me pit after some Eastenders brain numbing…can’t say I’m a fan, but it’ll do me nicely
Lotsalove girlies xxx
Hi All,
First zapping today - 1 down, 22 to go! Felt fine except for the cold I started this am. Tricky business trying not to sneeze during rads!
Hayz and Helen - hope you both have a great holiday.
Loocie - hope the queasiness stops soon. Probs just an initial reaction to Tamoxifen. Hope it settles down quickly.
I have been reading with interest re the hot flushes and the feeling of being cold. I wondered if it was just me. I am mostly freezing cold, and have shivers regularly and then hot flushes at night. So I am neither one thing or the other. Again it’s duvet on duvet off at night and I have resorted to Temazepam to help me sleep through this!! But it’s the shivers that effect me the most - I am desperate to go swimming but feel so cold most of the time and the thought of getting into a pool makes me feel extra shivery just thinking about it!
I read somewhere - that chemo drugs effect the temperature control of the brain. Is that true??
Lynn xx
Hi all
Hope everyone is improving steadily after various treatments.
Lynn, noticed you said you wanted to go swimming. I thought they advised against this during rads due to reaction with chlorine. Might pay to check with nurse first. Hope the hot flushes soon sort themselves out and that your cold soon clears up. Everything comes once doesn’t it.
I have finally got over the indigestion stage after 2nd chemo so am feeling a bit more cheery today. Leg veins ache a bit but are not swollen so I am just taking it steady and keeping and eye on things. OH has bad cold and is trying to keep out of my way so as not to pass it on but these things can’t be helped eh?
Another weekend coming up so all have a lovely time whatever you’re doing.
Lots of Love to all Babs xx
Ooo feel for you Babs, hope you manage to avoid the sniffles
I read that Tax affects the hypothalamus too, so there is probably something in it? Like you Lynn I’m mostly freezing, then have odd hot bits going on. The worst thing is that my toes and fingers still have pins and needles slighty, and when I’m cold they’re worse, brrrrr horrid! Hope you soon settle down.
Had a lovely sleep last night, and am hoping I get another good go at it tonight.
Keep warm my lovelies
xxx
Oooh Loocie - we have the same things going on. I still have the numbness in fingertips and toes too - toes worse than fingers.
Babs - you sound pretty perky, well done. Just avoid getting that cold! You are allowed to swim during Rads but there is a possibility of the chlorine reacting with the area making it more sore/red. If I wasn’t so shivery/cold I would probably give it a try.
Off to bed with hot water bottle!! (which works well when you are freezing cold and then gets chucked out when having a hot flush!! )- OMG makes me feel so old. I’ve taken to my dressing gown and hot water bottle like an old lady! Roll on some sunshine, spring and summer.
Lynn xx
LOL Lynn, the temp thing is mad. I keep coming up with cunning plans to make my night more comfortable. Tonight I’m about to try version 4…I think? I have slept better the last two nights, but would love to sleep through the night like i used to.
Got something odd happening in my lower right rib area. Feels really achy as if I have been punched, but also feels fluttery like a nerve twitch…it’s really odd; started yesterday after frying number three? It isn’t there all the time, but seems to come and go. Will ask about it on Monday if it is still bugging me.
Hope you’re all having a nice weekend…been lost in a telly fug as the settee was missing me
Lotsalove hunnies
xxx
Hi Ladies,
I hope you are all feeling well. I have just got back from 3 days at the NEC Trade show and I am absolutely cream crackered!!! It was lovely to get away but boy was it tiring. I was a bit worried before I went as I have noticed a bit of fluid retention on my legs and my thigh area gets really uncomfortable if I walk upstairs and kneeling down is impossible. Has anyone else had this? It started about 2 weeks after my last chemo and doesn’t seem to be improving, if anything it is getting worse. Makes me feel very old!!!
Going to start my Tamoxifen tonight, bit scared but got to be done.
Have an appt next week for CT scan and what I presume is my planning for rads. Is the planning done with a CT scan or I am I just really lucky? I take it that is when I will see the blue-tac!! Actual rads doesn’t start until 16th March.
Love to you all,
Jane xx
Hi Jane,
Glad you had a good weekend and were able to get away. The only bit of fluid retention that I have got (came on with Tax) is around my armpit/scar of affected side…oh and a bit on my ankles.
Yes the planning is done with a CT scan. They take the scan and are then able to plan your individual treatment. I had a good nose at mine yesterday - quite interesting seeing a cross section of yourself!! I didn’t have the blu-tac thing, so don’t know what that is - got a feeling it might be some sort of marker, but don’t know. I have titanium clips in my wound which acts as a marker…ie shows up on xray and scans etc…I think.
Let us know how you get on with the Tamoxifen.
Lynn xx
Hi Jane, sorry to hear about the fluid retention…bit of a pain isn’t it?
When I had my planning it was done using a simulator and CT scanner, so it may well be the same - hope you have the blue tac experience, at least you’ll know what they’re about when they start rolling it about
I was quite anti Tamoxifen, but decided to bite the bullet and go with it - until I get any sniff of difficulties. I saw my GP tonight, and he was really pleased I was taking it (he didn’t know of my doubts until today). He said that benefits of the drug for hormone receptive cancers are second to none. Will hold him to that!
Hope you’re soon feeling younger
xxx
Hi Loocie,
I think im having the same funny sensations that you described a couple of days ago - I get almost like a “bubbling” sensation and twitches on my left lower rib area, as you say, it comes and goes and feels quite bizarre … our poor old bodies, what are we putting them through?!
K x
Hi Katie…that’s exactly it! I have noticed an improvement, just feels a bit bruised now. I mentioned it to the rads guys and the seemed to think it was something to do with the positioning…my GP wasn’t that worried either. Will just keep an eye on it, but it is odd eh???
Feel all dopey today, well more dopey than usual!!! xxx
Hi Loocie
I’ve felt over the last couple of weeks that I’ve been punched in the ribs on the side opposite to the one that had all the treatment. I don’t remember being punched in the ribs (unless the OH did it to stop me snoring one night lol) or falling and bruising - it’s a bit like the cording I had after surgery on the other side last year. It’s slowly fading, but very odd - I’m hoping to just ignore it and it’ll go away! I wonder if we will always be this twitchy about every ache and pain from now on.
Had my hair highlighted today - it looks quite good, hope it doesn’t all fall out in bed tonight!
Helen.
Hi Loocie - at least we know there are two of us “bubbling away”, even if we dont know the cause!
I notice youre about to start tamoxifen - just to let you know I had quite a few side effects when i first started it a few years ago, then i got my GP to prescribe Nolvadex-D (still tamoxifen, but a more expensive preparation, so not routinely prescribed) and the side effects lessened almost immediatley, so may be worth thinking about. Otherwise, try tamoxifen 10mgs twice daily rather than 20mgs once a day - tends to lessen side effects again. And try not to be too worried about taking tamoxifen, be pleased that there is a treatment for you that will reduce the risk of recurrence
K x
Hi girls,
Glad to say that I am not bubbling!!
Started Tamoxifen 4 days ago and ok at the moment. Have noticed a few more hot flushes than normal but they only make me feel a little warmer than usual so not too bad. Good job its winter must be a lot more difficult in the hot weather.
Unfortunately have also had to start antibiotics as I have an infection in my gum round one of my remaining wisdom teeth. Hoped the pain would go away but had to see the dentist in the end. I really didn’t want to take them as I had just started Tamoxifen and didn’t want to interfere with that but it doesn’t seem to have made any difference - so far. Fingers crossed.
Off to have my rads planning on Tuesday - back to the dreaded hospital.
Hope you are all ok, you’re all very quiet so must be enjoying yourselves !!! Hope so anyway.
Love to you all, Jane xx
Hi Jane,
Excellent news re the Tamoxifen and good luck on Tuesday for the Rads planning.
I think you are right -we have all gone a bit quiet because we are feeling better and don’t need to whinge and moan so much like we all did through chemo!! I’ve got lots of things booked up over the next few weekends and am hoping that Rads is not going to wipe me out. Actually (I know it’s a bit sad) but have just got back from the X Factor live tour - well it is for my daughter’s benefit really…promise.
KatieFizz - I think Nolvadex D has been withdrawn from the market.
Hope everyone is feeling good at the moment and enjoying life once again.
Lynn xx
ps Loocie and KatieFizz what is this ‘bubbling’ - sounds weird.
Hello Ladies.
I was looking for some information please,
I usually use a different chemo thread but we are all quite new to it, and would like some help from people further down the line if possible. I am just over a week away from my third EC.
It’s a bit personal but if any one could tell me what happened to their periods while on chemo i would be very grateful. It’s just one more thing that i’m worring about as nothings doing.
I know it’s personal but would apprieciate any help. Thank you.
Debs