hi folks,
I’ve just had my 3rd epiribicin and had a rough ride with it. All veins in left hand were blown, 3rd attempt put the initial syringe of antisickness potion and saline drip into tissues of hand rather than vein. the nurse quickly removed it when my hand played ballon. So the 5th attempt went into my right hand as last resort (ive total lymph node clearance there) and all seemed ok. After a while I turned dizzy and faint. I spent a night in hosp but was ok. Travelled home and gradually became more dizzy and sick. GP checked blood pressure - all ok. next day,stood to cook soup, got hotter and hotter , began being sick and finally came too lying on floor. A first for me ! So Ive kept pretty flat since then… still feeling sicky so taking domperidone to help. Im on day 7 now and still bit sicky and dizzy if i move too fast. Any tips? ideas? Could it be coz the initial potion went into tissues? and how do i get these veins of mine ready for two weeks time?..
No ideas pet, just sending loads of hugs. Could you phone the chemo unit for advice?
xx
Cryst
Dear Suebeth
Ring the chemo unit. They are there to help you with anything which you think is abnormal, and I think fainting is!!
I was lucky and I had one episode where the vein caused the nurse and me grief, the other five times it was fine.
Please ring them
Take care
Anne
thanks Anne and Cryst
- I did later that night and they couldn’t tell me why, just that it was unusual. Im glad I did phone them though coz at least they checked things out, noted it down and my onc. will know what happened this time and may have some advice for next time…They advised me to phone the GP the next day if I felt worse… and I do feel a little better so am just taking it easy. Its learning who to contact isnt it… I think in future they will be my first call if I faint again, then the doctor…
I’d phoned my Mac Nurses that afternoon, but they had said the same - that it was not usual… hey ho — i dont want to be different… give me boring any time…
Hi Suebeth
Hope you don’t mind me asking but how were you with your first 2? Heard it does get worse but, although I had problems with my hand and now have to have central line in, healthwise I’ve been great.
Val
Hi Suebeth
I am sorry to hear you are having such a rotten time. I have spoken to one of our nurses about what you have said and she advises that you contact the chemotherapy unit for advice as soon as possible.
They will make an assessment and tell you if any action needs to be taken.
Best wishes
Ann
Hi, Suebeth
Sorry to hear you’re having such a bad time of it. I was on Epirubicen and don’t recall feeling anything like that. Maybe I was just lucky (or got a bad memory) but I think I more or less sailed through it. I know I was still able to work quite a bit.
With your symptoms, I’d definitely rattle some cages.
Good luck, and good luck to us all.
xx
Hi there
Sorry to hear that you have had such a rough time. I had 4 EC and for quite a few days after felt very dizzy on getting up and almost fainted once. Also felt really sick for over a week.
I would contact the chemo unit as well .
best wishes and hugs
Alison x
Get some stronger anit sickness stuff from the unit. Domperidone is very mild. I got two more lots of strong stuff to stabilise me.
Wishing you well
Louise x
Hi Suebeth, sorry to hear that you are having a tough time, i too had (total lymph node clearance )and was told by my bc nurse not to have any bloods etc taken from that arm, maybe you should look into this.
I do hope that things get better.
Hi Suebeth
About your veins, I had my last chemo in my foot when they couldn’t get a vein in right arm.
Went for a MUGA scan last week, they couldn’t find a vein in my hand, blew one in my wrist and ended up in my left foot. There’s evidently a wonderful vein there. I’ve found it doesn’t hurt as much in my foot.
Hope things improve
Marilyn x
thanks for all your replies… the scary thing is being poorly and not knowing why or when it will end. I do feel slightly better today… I’d phoned the 24hr helpline after calling both the Mac Nurse and GP here , they said 'they didnt know why, it wasnt usual, but as my bloodpressure was fine the day before, really there was nothing they could do… ’
I live on an island far from my onc and it seems I have to be proactive myself if there are any problems. Dont mean to sound like a child here - but it is hard when you try to be brave and not wimpy, and just get on with it. I was thinking maybe I was making a fuss.
Its so good to have your support … I need the epiribicin… but dont know how far my body can be pushed… Ive not fainted again but I move slowly and dont do much at all… still sicky but not vomited - though i now have nasty heartburn…sigh!!
I did laugh with your comment about the usefulness of feet Marylin- that cheered me up no end…at least i have two of those so one of them should have a decent vein…if they dont put a line in
Alison - you felt dizzy too? This session has been the hardest so far for me… I’m starting to wonder if Im drinking enough… did you consciously up your fluids? Im finding it hard to drink
Val - my 2nd session wasnt even a 1/4 as bad… it was better than my first - but dont worry coz the 24hr helpline folk said that every session can be different .so your sessions may get better as you get to know what works and what helps…good luck
Maryj - you are right - but it was a last resort and the chemo nurse checked with my oncologist who said it could be used up to twice during the course of my treatments… guess it shows how important this life giving elixior is…despite its sh**ty nature!!
decided that if I still feel this rough tomorrow I will phone for more advice form the 24hr chemo helpline. Its not being wimpy - its being sensible…
take care
suex
I’ve had low blood pressure since third epi, and still have it, now on 2nd CMF. I had wondered why I kept feeling dizzy until BP taken. Just another side-effect that I suppose we have to put up with for the sake of upping survival odds…please post if you get any other explanation for it, I’ld like to know.
Love Zoe x
Hi Sue
Just be assured that you are no wimp. I did have quite a few dizzy turns on EC. I got out of the car quickly once and thought I was going to hit the floor. I definatly did not drink enough as I could not face it as the taste was so bad in my mouth. The best thing I found to drink was lucazade.
Definatly phone for advice if you are not sure about anything because thats what they are there for.
I also had terrlble heartburn and my doc gave me Zantac which helped alot.
Wishing you all the best.
Alison x
thanks alison,
its good to know that it isnt such an unusual response after all… and I do feel much better today… its very much doing and learning isnt it? I’ll add lucozade to my store cupboard for next session…next week - yikes!
you dont say where you are on the treatment route… but whicever point your’e at - good luck 
suex
Hi Sue
So glad that you are feeling a bit better. You are right chemo is a steep learning curve. This forum has helped me so much and its helped to know other women are going through the same side effects.
I had my last chemo, EC, 3 weeks ago and I have my op next week. This will be followed by radiotherapy and arimadex. It has felt a long slog but I feel I am getting there!
Glad you will have some lucazade ready, I also found soda water a help.
With best wishes
Alison x
thanks again Alison
thats soda water on the shopping list too… you are right about this forum - everyone gives you tips that really help.
You have your op next week… hope it goes well. I found it hard getting anything over my head so pjs that opened down the front were the easiest to wear. I made and took in a small oblong cushion to support me when I lay down. I tucked it under my arm and it easied my wound and made it easier to relax. A rolled up blanket also helped at times to lay my arm on as well as my cushion. Try not to have you first few showers too hot - cooler is better. Don’t make the mistake I made - one of the women in the ward was saying she had stopped painkillers on day x… so when day x came I tried to cut down…stupid! Not that it was very very sore - just that with a certain level of pain it is harder to relax and sleep and move about … so I soon asked the nurse on her next time round…and was back to getting better again without pain holding me back! Try and do the exercises they give you - dont push yourself too hard - but the more you do them the easier it will get to move your arm. Forgive me if you know all this already…I was so worried before my op - sure I’d die or wake up during the anaesthetic…Ididn’t and unlike other times after ops when I have been so sick - this time I didnt even feel sick.
I made a good friend in the ward and we keep in touch …hope you find someone you can chat to and have a laugh with when you are in.
I’ve my last epi next week , then 4 CMF’s then onto radiotherepy and herceptin. Whew! say it quick and almost a year has passed… its amazing how different this is for everyone, the drugs are so may its a good feeling knowing theres so much out there to help us fight this …
If you are able and have the time - let me know how your op goes. wishing you the best with it anyway…
take care
Suex
Hi Sue
Thank you for all the op. tips they are really helpful. I am going to get some pjs .Also the tip about the cushion and blanket are very good, will do that.
I am terrified of the op. with the same worries that you had of not waking up etc. I think they are going to give me a pre med to keep me calm!
It will be so good when you have finished the epi and get onto the cmf, which I believe is gentler. After my op. I will have to wait about six weeks before the radiotherapy. By the time I finish about a year will have gone! Will be starting the arimadex soon I believe.
Hope you have a good weekend and best of luck with the next chemo.
Love Alison x
Hi folks,
Im heading south tonight… the sea looks rough… so Im hoping that the journey and my next session goes smoothly… its daunting…but my positive Mac Nurse said this morning that this time round may not be so bad as last… the hosp has booked me in overnight… I must stock up on nibbles… glad to hear that CMF is usually easier… thats something to look forward too…
Trying to fight down the feeling of scaredness… been giving myself a talking to…chemo is good…like a mantra… chemo is good - even if it makes you feel bad… chemo is good… doable is a word that crops up often too…
ALison, this time next week your op and my last epi will be over and we will be one huge step closer to getting well again… yippee :))) I heard on radio that arimadex is even better than tamoxifen… great to hear you are starting it soon… Let us know how the op goes… we’ll be rooting for you…
Marylin thanks for adding the bit about the foot not hurting so much… I am dreading (yep didnt realise how much til I went for bloods yesterday and found my heart racing and my palms sweaty…never used to bother about needles and etc before all this!) this thursday - tho’ again my positive Mac Nurse says they might get it first time … mmm… hope she is right…
Zoe - hope you are better. If they can tel me why I was so dizzy and fainted I’ll let you know… its a roller coaster this chemo lark…
good thoughts sent out to you all …
wish me luck for this next lot… it may all go well and I’ll look back at this post and laugh with relief… hope so anyway!!
take care
Suex
hi folks,
last epirubicin over… and the old heart bumped up a bit so I was kept in hosp - but day 8 today and hey ho I am much better than last time…thank goodness!! Ive learnt than I have to be very proactive and assertive and if feel so bad in the future I have to ask for help and not go to ground…thank so all so much for your help and support…it was a very scary time…
Alison - hope your operation has gone well - hang in there… this is anotehr big step towards getting your life back…stay strong.
take care all of you
suex