Hi there Jackie… Ill be at the abba concert too. Someones just texted me to offer me tickets. Should be fab. We’ll have to come on here and compare notes the day after. I was hoping for the accelerated treatment arm that you got but got standard treatment for my Epi. Although i wondered how i would manage without a ‘good’ week, the nurses said a lot of women coped really well and maybe weren’t hit quite as hard due to the additional injection. At least you’ll be on the tablets a good bit before me so Ill be keen to hear how they are. Iv not read anything here about those, have you? goodnight all, hope tomorrow brings relief from horrible side effects. xx
Hi,
had a rubbish day at the hospital for number 7a of epi,CMF as everything went wrong but at least it is done. Not looking forward to 7b next Tuesday. I find going back really hard, so very impressed with you on the accelerated ones. You just have to chug on and think that is another one done. Ask for heartburn tablets they are very good and lots to try. Remember they get the drugs free on the trial from Roche so no skin off their nose to dish out lots of extras if you need them. Claire I write to a lady in Basingstoke, there are lots of local people around on othe threads if you look or start one. The Abba sounds great, I love the old tunes.
Good luck with the hair, I am afraid epi strips most people of every hair on their body although some keep hairy legs , which is so mean. It starts from about just over 2 weeks and progresses, some people talk about their scalp burning as it falls, Mine didn’t at all. I still used to run my hand through my hair and lose loads, very upsetting part I think. Good luck and don’t rush into anything too drastic as some people keep it for longer than they think and it takes a while to come back. Mine is already fully covered and about 1 1/2 inches long but fluffy like baby hair and I have just started dose 7.
Take care
Lily x
Hi Carmel
You’ll recognise me at the concert. I’ll be the one with the combover and the very thin hair! That is if I don’t wash it later and it all falls out LOL, then it’ll have to be my new wig.
btw I’m only on the accelerated arm for the epi, then I go on the long route like Lily for the cmf.
Sorry to hear that you had such a bad day yesterday Lily, hope you’re feeling better today.
Jackie
Jackie, I need to use the LOL abbreviation more… I certainly did. Ill be scanning the arena for a combover!!! Lilly, the hair loss comments were useful because iv not lost mine yet and I do feel like im waiting for it to happen… What a bummer about the hairy legs…
Thinking about you ladies who may be feeling rough today.
Im booking up stuff fast to enjoy before next Thursday when I have to do no 2…
xxx
Hi all,
I had my 3rd CMF yesterday and am feeling OK - it really is much easier than Epi. They had fun using my Hickman line for bloods on Monday - I had to hold my arm up and wave like the queen - LOL. It only took 25 mins for all the drugs to be put in yesterday though - bonus.
Lily - having the Hickman with a local wasn’t too bad and I’m sure have your port out will be ok.
Carol - good to hear you’re feeling ok after 6 days - I found it hard to function before 10 days.
Off to watch Heroes now !
Best wishes,
Shelagh xx
Hi,
feeling good today. I was just spaced out from having piriton and then having 2 people talk so loud next to me that I could not sleep it off as usual and then got the stinging nose for ages as awake. Over 5 hours int here just wore me out but great after a night’s sleep. Will not hear about the port until I go for rads planning and they check the angles but it did not close yesterday and kept bleeding so not very happy about going back for more on Tuesday and 4 stabs to get into the port so rather tender now. Carmel my leg hair went and my face was a smooth as a baby’s with no hair and all my wrinkles went. You do get some good bits!! Arm pit hair still not back - hooray. Did you know you can’t shave under arm or wear any deodorant while having rads - that will be hard to stick too!
Take care and good luck on your next dose or getting better
Lily x
Hi
Lily So glad you’re feeling better - long may it last!! (This is Carol not Claire - but close!!) I’m certainly looking forward to the wrinkles going - cannot imagine being bald and having wrinkles! Port sounds as though it can be a blessing but painful at mo - especially as you’re back next Tues. Well done to you ladies on the accel Epi - do all the side effects just come in one go? How does it work? No trials offered to me & I didn’t ask.
Shelagh - waving like a queen is good (or did you say the queen??!!)
I use LOL too - but got confused whether it was laugh out loud or lots of love - at the end of the day it doesn’t matter I s’pose!! Typical that leg hair stays - was hoping to save on waxing - can I do that thru this lovely treatment? I had no idea no armpit shaving or deods when you’re on rads! I learn something new from you ladies everyday. Day 7 and I think I feel normal again … must be my liver is used to the onslaught (too much red wine in the pub after a day’s teaching!!). How’s everyone else on their first Epi? (Still can’t eat beetroot because of the colour by the way!).
Hope all you lovely ladies have a good day
xx
sorry I havent been in touch ladies, I really didnt have the energy to lift my laptop up to use it, and then yesterday when I felt a bit better I had no connection to t’internet… grrr
so the anti-sickness stuff didnt work, tried some o them travel bands… they didnt work, feel loads better now though, just dizzy and a bit weak
oh wow! wombwell… we almost bought a house in wombwell in January 
but we got one in Darton instead.
hope you enjoyed your abba evenings!! I have got to go see mamma mia, I think Im the only person in the world who hasnt seen it yet!
take care, love Nettie xx
Hi,
feeling ok but I dropped a steroid off this time, so only taking 3 and went from manic to sleepy and can hardly wake up. Will have to decide which I prefer before next week. Hmmmmm. Nettie get on to the unit and let them know it didn’t work so they have something stronger or different planned for next time. There are loads of drugs to try that work in different ways and they should be able to sort it out for you. Carol you probably won’t need to wax ANYTHING if you are on the usual drugs. My hair has come back and is a little manic. I always had what we call flat eric hairs on my arms but now more like cactus effect! Can’t wait to see how the rest comes in.LOL . Be very careful with alcohol right after a dose as it doubles the toxicity with some drugs, as does neurofen i believe. Shelagh was that CMF part a or the whole thing? I am really chilly on CMF, temp running at 35.6 and having to wear a hat in bed and loads of extra covers. The rest of the family are cooking. Is it affecting you that way? It has also given me orangish stripey nails, look like I smoke like a trooper! You must be on CMF tablets to get out so quick. I react to cyclophosphamide and have to have it diluted through a drip and set on the slowest speed, with piriton as a back up, so that takes an hour but the rest is quick.
take care everyone
Lily x
Hi girls
Back to normal for me since yesterday, day 9 thank goodness. Thoroughly enjoyed my evening out with Abba, singing and dancing just like before the bc. Went with eldest daughter, sister inlaw and a friend, great night had by all. Hope you enjoyed it as well Carmel. Didn’t wash my hair, so still had some and covered what was left of it with a sparkly beret, felt good. Nettie don’t miss Mamma Mia it must be the best feel good film of the year. I’ve already seen it twice and could easily go again.
Off for bloods and to see onc again tomorrow. OH has bad cold, so good friend coming with me. OH won’t let me go on my own even though I assured him that I’d be fine. We’ve spent the last couple of days trying to avoid each so that I don’t catch his bugs.
Sorry to hear about your bad experience Lily, but glad to hear that you’re now feeling better. Carol glad you’re feeling better as well, shame about the beetroot.
Anyway take care everyone
Jackie xxx
Hi
Good luck Jackie for tomorrow ! Hope you don’t get the bugs.
Lily - thanks for the alcohol advice - not a drop has passed my lips yet! I’m sure my body will tell me when it’s ready for some… I think my liver has enough to cope with at the mo!! Were you given the option of dropping a steroid? I’m sleeping whenever I need to at the mo - prob just as well I’m not teaching… Did you have allergic reactions to the drugs? I’m anaphylactic to various stuff, so the allergy side does worry me a little - I must have asked 5 times if they had the adrenalin ready when I had my first chemo - but I gather I’m more likely to react next time. Would love to see the cactus effect !!! Good news about the waxing too!
Nettie - pls make sure you tell the unit about how you felt - there’s stuff to make you feel better (so the nurses keep telling me!!). Trouble is, when you have no idea what to expect, it’s hard to know how bad is bad - if that makes sense. It’s the same old question of what is normal. Glad you’re beginning to feel better - make sure you see Mamma Mia - even though PB cannot sing it’s such a great movie. I went to see it just before first epi - made me smile so much.
xx
Hi everyone
Decided I’d better wash my hair, what was left of it, before tomorrow’s visit to onc. Anyway it really started to come out in handfuls, especially with a little help from me. Looked very much like Max Wall once it dried so got OH to give me a No5 with the clippers. OH had a tear in his eye while he was doing it. He said he was more concerned about my reaction to it, but to be honest I’ve been psyching myself up for this moment all week and I feel fine about it for now. Tomorrow I will be giving my new wig it’s first outing. Hope it’s not too windy as I don’t know whether I trust it yet. I’ll keep you posted.
Jackie xxx
Hi Jackie - I’ll keep my fingers crossed for no wind … I’m about a week behind you I think !! xx
Hi,
it is a tough time when your hair goes for many women, although others seem to just go through this almost positively. I wish you well, whichever group you are in. I was in the oh no not my hair camp and used the cold cap. I think your whole attitude changes over time when you priorities bounce about a bit. I had to joke about it to get through it. I had the funniest day evr choosing 2 wigs which I haven’t worn and loved trying every hat in our town on. I sleep in a silver lamee bobble hat to keep my head warm or wake up shivering as temo drops really low - what a princess! Just grab your giggles where you can. Jackie I will be hoping for calm. On the thread I started when I first came on the site, we road tested everything to do with hair, and Nicky got to 60 mph in a sports car with the top down and her wig did not fly off, so don’t panic too much!! Carolj - i have been pondering over whether my tablets made some of my side effects worse, and my changes were made after chatting to my research nurse and the doc in the unit first. I did it really slowly just cutting back anti- sickness tablets one at a time per dose as not feeling nauseous and have never been sick while on chemo or got even close, mainly acid and bowel and mouth troubles instead. The anti sick tablets cause a lot of these, especially constipation. I couldn’t teach even if allowed in school, could you? Hope it all comes back to me as will be off 10 months most likely. I have not had anaphylactic shock but my nose closed and hard to breathe and terrible pains up nose, sinuses and than across my head before nearly passing out. Not sure what would have happened next but they controlled it by going as slowly as the drip pump would go. I can tolerate it until the last 200 mls then goes pear shaped.They say it is not unusual with Cyclophosphamide.Are you on epi/CMF too? Good luck with yours that you don’t have a reaction but they are always ready for it I am sure.Jackie so glad you have crawled back up th the surface of the dark hole and had a lovely evening singing. I haven’t seen it as unwell when it went through, plan to buy the DVD when it comes out. I love Piers even if he can’t sing!! Its the James Bond attraction! Yum.Good luck with visit to the onc.
Hi and hope everyone else is ok. Keep chugging along one thing at a time and before you know it you will be well on the way to the end of this bit.
Hugs
Lily x
Hi
Lily - You sound like you need a week in the sun - I’m always the opposite - far too hot!! Yes first epi of epi-CMF done and dusted… your poor nose - I was warned I might feel a “strange sensation in my bottom” !!! Nothing happened but it was weird waiting for it!!! Thanks for the warnings about concrete constipation - I had it at the front of my mind right from the start… For the first week I had to force myself to have fruit - didn’t feel like it and normal cereal tastes like hamster food. And there’s always the stash of licoricre (ha that doesn’t look right!!) liqiuorice (?) in the cupboard.
Good way to start the day thinking of Piers … normally by now I would be sorting my classroom before the kids came in. Think I’ll be due back about June - we shall see. I agree - I couldn’t teach 6 year olds all day at the mo.
About hair - I’ve had very mixed feelings, still hanging on to mine but it’s early days. I too went with a mate looking for wigs - it was the biggest giggle I’d had in a long time. Very tempted with the pink one plus tiara… I know I will cry when my hair falls out, but I’m trying to think that the chemo is curing me not that it’s a poison (hard at times!). I think the biggest problem is that people are so judgemental - we shouldn’t care, we’re far braver than them (well, some of the time!!!).
Technical question - with my foggy brain - i keep forgetting where I’ve posted - is there an easy way to keep track?!?
Have a good day ladies
xx
Hi Carol,
post 2 as the beast just went off the internet link and ate my post. Grrrr. I was aways really hot on epi but since moving to CMF, my body temp has dropped 2 degrees and I am freezing a lot of the time. Hope you don’t get the big freeze when you change over. I will soon have to have the central heating on all night.
The only time I had the ‘in the bottom’ sensation in the unit was when the drugs were pushed in too fast and then I complained and it went as soon as they stop rushing. The speed they push them in can make you really odd if they hurry. There is one tiny nurse in my unit who can’t seem to keep the flow stable and that makes my port really hurt.
I teach secondary kids, so at least I get a break, brief though, between classes. I can’t think about teaching and planning lessons just yet and hope they have an easy return with a small timetable planned for me when I go back. June sounds like an ideal time to go back for you. I will get Jan/ Feb and the icy weather and defrosting the car! Lovely.
To remember the threads you have posted on, look at the top left of each page where it says ’ start a new discussion.’ Underneath you can click on bookmark this discussion, then they will all be highlighted in blue so you can spot them more easily
Have a good day
lily x
Hi girls
Back from my appt with onc and wig still firmly in place. That was the easy part. Had a bit of a nightmare with my bloods though. She tried four times in my good arm, finding the vein each time, but no blood would flow out. Eventually got a trickle which she put into two tiny vials and sent them off for testing. When I went in to see the onc, he said I’m afraid the machine could not get a reading from your bloods, we need another sample. He said it would be OK this time to take from bad arm. I was a bit worried and asked him if he promised I would be fine. He then went on to explain that there is no real evidence of what causes lymphodoema, it just happens with some people. Anyway I trusted his judgment, hope I did right, and went back for another blood test. This time a different nurse used the butterfly needle that they use on children, in my bad arm, and managed to get some blood straight away. I now know to ask for that each time to save being stabbed so many times. I left before my results came back but haven’t had a phonecall to say that there was anything wrong, so will be going for my 3rd epi on Monday.
Jackie xx
Hi
Hope you’ve all had good weekends! Good luck today Jackie - I’m 2 behind you! Hope you’re ok after the bloods fiasco. How were the side effects after the 2nd one - can you remember? My 2nd epi is on the 30th.
Lily - I’ve managed the bookmarks now - much easier!!
Anyone else enjoying a few days before the next epi?
xx
Hi
Hope it’s ok to join in. I started my 1st epi on mon 13th Oct, on accelerated programme on tact 2 trial. Got a throat infection so on pennicillin today, not a good start! Setting up a champagne and shave night for when the hair goes, wigs and hats at the ready. Have been on steroids etc and find im so hyper have even swept the leaves in the garden! Have read all info above much appreciated. New to writing on these type of chats so any info would be good.
x x x
Hi
Well I’m home after epi No3. Thought it might be cancelled though. I was so paranoid about keeping my arm warm that I sat with my coat on and also wearing my wig in the warm waiting room for almost an hour. Once we went in the nurse checked my bp, pulse and temp and lo and behold I’d got a temp of 37.6. She had to get hold of the doctor to agree for me to carry on. It turns out that my bloods were so good that he wasn’t at all worried about me thank goodness. I told her that I’d checked my temp this morning and it was only 36.2. So next time a thing scarf and remove my coat as soon as I get there. The electric blanket will have to work it’s magic on my arm. The vein they’d used before had gone into hiding but the nurse managed to find another one quite easily so all went to plan.
The effects on No2 were slightly worse than No1 but only in that I suffered from more heartburn. I’ve come away with a bigger bag of goodies this week, my usual steroids and anti-sickness, plus Ranitidine for my heartburn and Difflam mouthwash to use in the case of ulcers etc.
I’ll be thinking of you on the 30th, it’s hard to believe but I’ll be back in clinic the day after for bloods and back for treatment again on the 3rd Nov. That’ll be the end of my epi and then onto the slow journey of cmf like Lily. Hope you are feeling much better now Lily especially as you’ve only 2 more visits left.
Take care everyone
Jackiexx