Hi, I read this site quite a lot over the last 10 weeks and I am desperate to know something. Am I the only one who after having one EU Chemo could’t cope because the side effects were nothing like the Side effects talked about on my side effect leaflet given by ONC or on this website. I think he missed a whole couple of pages. I was so ill I thought he had killed me couldn’t move talk or communicate with anyone. Head swollen in skull head exploding could’t cope with light, stabbing pains in legs,sick, nausea stomach cramps etc. etc. Felt like I had been poisoned and would die but couldn’t even tell husband as so bad and debilatated.
Had another friend who had the same this with chemo but on this site everyone is always so positive do these get ruled out? I wouldn’t of been so woried had my ONC told me all of this and said someone must stay with you in the same room for 24 hours after but we were made to believe that I would just have a little sickness. I can’t believe that patients don’t spend the night of the first Chemo as an inpatient. Blown my confidence in hospital/Doctors even more. No more Chemo still tremble when I think of it!
Hi Jaspurr,
I’m so sorry that you had such a bad time.I know i’ve heard before on here that some people do seem to be particularly sensitive to chemo.Have you decided on no more or was that choice made for you?
I wouldn’t ever say that chemo is a walk in the park,but usually its tolerated.I found that none of my six sessions of chemo were ever the same as regards SE.The very last one i had in 2008,i remember lying in bed on boxing day and not even able to lift my head off the pillow.I had heartburn,sickness,depression amongst other SE during my course.I certainly couldnt comprehend how celebrities like Trisha Goddard seemingly carried on as if it was nothing.
Don’t be hard on yourself and i wish you all the best
Hi, I have made the decision to stop chemo couldn,t go through it again, never thought I would say it but would rather d-e. I couldn’t get to bed stuck in a chair for two days in lounge could never of got upstairs even if I had tried. Crawling to toilet and droped my dressing gown into the toilet once after using it ughh digusting but I just had no control.Couldn’t even put anti-sickness pills in mouth husband had to do it. Think it’s why I had sharp pains in my legs proably thrombosis couldn’t move and sat still in chair for over 12 hours without moving. The worst was that I couldn’t say to husband how bad it was still can’t believe I wasn’t kept in Hospital over night. Oh well stop complaining only my problem really. Thanks for your comment.
hi Jaspurr,
No your not the only one I had a horendous time with chemo, The Oncology nurse told me that it affects people 1 in 10 people really badly and unfrotunately I was one of them.
They gave me some tablest called Tamazopam and they basically put me in a haze for the first 5 days to get me thorugh it, it may be worth speaking to them about it. It was swtill really tough but i literally just slept for 5 days and then had 4/5 days of feeling awful but was able to cope with it before having a week of okayishness before the mnext one!
It is the most difficult thing I ahve done and dont think I could have done it without the pills!! I also made it harder on myslef with insisiting keeping going with the cold cap, which now i know is should have given up on it!!!
I hope things get better for you, I finshed chemo last jan 2010 then had rads, herceptin for 12 months and have just had my reconstruction. Finally starting to get my life and hair back!!
Take care
Nicki xxxx
Jaspurr - the reason why you don’t read many posts on here from people undergoing the kind of side effects you experienced is probably because many of them are too ill to even think of going on the internet, let alone post on a forum.
I never turned on my computer all the time I was on anti-cancer drugs and radiotherapy, because I was so unwell that my eyes couldn’t even focus on the screen nor my fingers operate the keyboard.
Sorry to hear you and others suffered so badly with the chemo. I was lucky in that I found chemo quite do-able much moreso than I expected. However I was unlucky in that it never worked (I had a recurrence within weeks of finishing).
Good luck with the rest of your treatment + recovery
tina x
Oh jaspurr that sounds really horrible.I do think your se’s were extreme-couldnt you try a reduced dose rather than giving up altogether?
My se’s were cumulative and by the end I was ‘welded’ to the bed,had to use a wheelchair,had horrific diarrhoea and awful breathlessness.
I wasnt as bad as you sound though.
Hi Jaspurr,
I have other auto-immune diseases so I guessed that chemo was always going to be tough for me. The first night of the first cycle, I really thought that I was dying and to slip away would have been a relief. The rest of the 3 weeks was very tough and I spent most of week one in an un-rouse-able sleep; which sounds a bit like what you experienced.
One of the long-term health problems I have is fibromyalgia, and un-rouse-able sleep is one of the possible SEs of that so that symptom alone didn’t worry me too much - I’m kinda used to it though it used to spook my OH at first a few years ago until the GP said that it was normal for FMS sufferers to be halfway between sleep and coma for a few hours. My body just needs to shut down at times and heal.
All my SEs were very bad so the Oncy reduced my dose by 20% for the second cycle. I still had the ‘it’ll be a relief to slip away’ feeling on day 1-2, but overall it’s been better and I have been able to eat this time.
I hope that you soon feel better; could you discuss this with the Oncy and try a different drug at a lower dose perhaps?
Good luck and good health no matter what you decide.
HI Jaspurr
Chemo for some of us is far worse than for others. It’s horrid for everyone but completely debilitating for us rare few. I tend not to say too much generally on the site about it as I don’t want to worry women who are about to start chemo. Thankfully it seems unusual to get so ill with it.
I was so sick and nauseous and weak for my first 4 chemos (FEC) that I lost nearly 3 stone.
I then had a severe reaction to taxotere which brought me out in terrible rashes, I was completely bedridden and ended up being admitted to hospital for 5 days with neutropenic sepsis.
I would echo what Horace has said. Because of my severe reaction my dose was reduced by 25% the next time. It helped although I still spent the first 6 days in bed after each chemo. Hard it was I’m glad I persevered. In total I got through 8 chemo sessions although sometimes I felt like I was going die from it.
Can I suggest that you talk things through with your Oncologist? I understand that desire not to continue but perhaps they can change things for you or even agree to admit you to hospital for the next one. Elinda x
I was very sick with my first chemo and the anti-sickness drugs didn’t touch it, even if they could have stayed down. So I was admitted on the evening of day 1 of FEC1, but I was given IV anti-emetics for that first one which got me through, and then my onc changed my anti-sickness meds.
I was certain I was dying, I was busy turning myself inside out with the vomiting (and everything else!) and it was horrible.
I’m not familiar with EU chemo, what is that? I think you should have a word with your onc, and you might also find the helpline really, well, helpful. It is staffed by very knowledgeable people who won’t judge you or try to persuade you one way or the other, but may be able to give you some balanced information to help you. Please give them a ring, I’m sure you’ll find it useful to talk it over with a real person. (Not that we’re not real, just you can’t talk to us, just type to us, which isn’t the same.)
Hi Jaspurr,
Sorry to hear you’re suffering so much with chemo. As Chocciemuffin suggests, please do give the helpline here a ring, they’re here to support you through this. As it’s the Bank Holiday weekend lines aren’t open again until Tuesday morning at 9am until 5pm.
Take care,
Jo, Facilitator
hi everyone,
i had 6 tax, and i felt pretty much out of it for at least 2 weeks after each one, from day 3 - 10 i would spend in bed, crawling around on all fours to the bathroom etc, horrendous fatigue, not being able to think straight, and an effort to talk, very sore mouth full of thrush, no taste, and now i have finished the treatment my fingernails have started falling out, i had lost my hair about 2 weeks after starting the poison, i am very tired still, my energy levels are very low, i have had to have a blood transfusion, and i have days where i feel very low.
for what its worth the ses for me were really only just about bearable, so opting out of chemo was never an option for me.
i can really understand and sympathise where you are coming from, if the ses were too extreme for you to bear i dont blame you for opting out, having said that it wouldnt do any harm to discuss things with your onc, they can try other drugs and lower doses as some of the other ladies have suggested.
more info and literature containing personal experiences would be good, as for people being scared off, people still need to be informed and educated with regards to some of the ses from each particular chemo.
all the very best to you for the future, keep posting love liz xx