Reduced dose chemo

Hello,

I was the same on fec chemo. Slept for hours and felt dreadful but docetaxel didn't affect me as bad. I just had bone pains but coped well on it. If you have completed EC I would start docetaxel and see how it does. I had 4 sessions and felt OK, was able to walk my dog and get on a bit but as you say, the first part was horrid. 

Julie x

Yr truly not a wuss, you have been diagnosed with a cancer that requires some pretty nasty chemicals to save your life / stop it coming back and the fact that you have been really feeling such bad affects and still going back for more - makes you incredibly brave x 

Your team will have a solution and I hope it’s a speedy one for you 

️ 

Have been thinking of this thread all night. All I can say is yes, chemo, for most of us is doable, that’s why we’re all still here posting and supporting others. I just think we should be more open to saying yes, chemo is hard for everyone and most people get constipated, diahorrea, mouth issues, taste issues, sleep issues, hip and leg pain, headaches, UTI’s, skin pain, spots, dry patches, eye strain, watering, on top of loosing your hair! I just sometimes felt that everyone else coped better than me. I almost felt good when the odd post was I just feel crap! Because some days it was as simple as that. It just helps people feel better prepared if people say yes I’m doing great also i work part time and have a great husband, live 2 mins from the hospital because that makes a massive difference or I’m retired. It doesn’t lessen the experience but it gives people an honest expectation and helps them prep. I was lucky, I never vomited once, despite often wising I would be sick, my oncologist said I’d sailed through, despite all the things I listed and more happening to me. It was flaming hard going. I did look after my child, I have recovered well, my hair torments me but it is coming back, I’m back at work, for me life goes on, hopefully for all of us but I feel for posts like your original post because I felt the same, that I wasn’t coping as well as others. But you’re definitely not alone in how you feel. Chemo is just different degrees of shit for everyone, sadly. And sometimes you can’t express things well for fear of scaring people or wording things wrong, etc and as I’ve said, we don’t often post when we’re feeling dreadful, you do get the occasional thread. It does eventually end and you’ll feel better. For me chemo wasn’t a marginal thing, it’s given me an extra 20% which I’m glad to take but I’m not keen to revisit. Take care, hang in there, find something to laugh at and that you can tolerate eating, sleep well x

Thank you ️. Fortunately (or not, depending on perspective) I do have a dark sense of humour so there is sometimes a fair bit of comedy mileage amongst all this horror. I think you’re right about people writing about it after treatment also. Once I ‘turn the corner’ after a round of chemo, I’m hard-pressed ti really put into words how it felt or properly remember. It’s just like nothing else you can liken it to, for me. You can list side-effects, but they don’t really cover the feeling of it.

thsnks for your supportive posts. Xx

Hello,

Sorry you're having such an awful time. I can totally understand how you feel because for me chemo was the same. I had hoped since I had it in early 2016, things had improved. I suspected more personalised treatments were making things a bit easier . So many are no longer prescribed it because tests have shown it may not improve outcomes for them, whereas a few years ago, almost everyone had it anyway. It seems there are  always going to be people like you and me who react severely to it. For me, I was 11 or 12 days each cycle before I could go out of the house. For several days, moving my head in bed made me physically sick. Anti sickness could only be given by injection. I couldn't keep pills down long enough and the injections don't always work. If you can't eat, you get weaker therefore the daily walk or for some people .....a jog.....are things to dream about. If I could shower and put on clean pyjamas,  it felt an achievement.

This is always my argument. Chemo effects everyone so differently. No one should feel guilty if they feel really unwell. You had no control over it. No one should feel guilty if they don't feel unwell. You aren't ' lucky' as I sometimes read. You have just reacted less severely. But it isn't always helpful when people who haven't had sickness and become debilitated suggest those who do simply need different sickness meds. Of course discuss it with your nurse or doctor, but if you are really sick, probably the best solution is lower doses of the chemo which may mean extending treatment a bit longer. 

Hel39 I think before you start the Taxotere you should make sure your tell your doctor how sick EC made you. For some people the taxotere really improves things. It doesn't often cause sickness. I was sick but this time only after I ate, not laying down. I did develop neuropathy though and still have permanent problems as a result. Most people don't.  I just didn't react well to any chemo. The radiotherapy later caused no problems and of course, nearly seven years later, my cancer is still clear so obviously it was worth the 6 terrible months. However, I did only have 5 of 6 cycles because of the neuropathy. My onco told me that they don't really know the exact requirement but my feet wouldn't have dealt well with another dose. Nerve damage was causing me too many difficulties. 

So my advice is not to try and decide this on your own. Don't make decisions at all until this cycle's sickness passes. Ask if a reduction or weekly doses would be more suitable but most of all... you cannot help feeling dreadful and ignore anyone who suggests otherwise . In a few.months, I suspect you will be me, helping others understand that you can still get really sick, you're not a wimp, fantasising or exaggerating.  There may be no extra medical help to prevent the reaction but time doesn't stand still. A few months feeling really awful is a good exchange for many more years of life.

Take care. Don't despair.....on a positive you're half way through !

Love Karen

Of course it’s hard for everyone but I don’t think it’s helpful to say most people get the long list of symptoms you list as it implies most people get all of them, which isn’t likely to be the case. I won’t be engaging in this thread any more. 

I think it's important to remember that everyone's experience is different and people are commenting on what they have experienced, which is the point of this forum I think.

People also want to hear different things, It may be good for some people to hear about other people going through a hard time, but other people may not want to read that and want to hear about positive experiences to help them get through or before they start - there are plenty of people who really do sail through chemo.

When I was about to start exemestane, I looked up reviews on Drugs.com and filtered on 10/10 reviews only. I didn't want to read about anyone's bad experience, I wanted to start taking them in a positive frame of mind.

Unfortunately, we cannot filter like that on this forum, but we can take whatever we want from everyone's experiences, Some people are naturally positive and I don't think we should be censoring anyone unless it is abusive, and I have not come across anyone doing anything other than sharing their experience.

Hi Hel39

I hope you are feeling somewhat better 

I would not be happy with seeing your oncologist once in the 6 months for 20 mins

Its strange how different trusts work

I would insist on seeing your oncologist to talk this through before your next round ,its a very personal choice for each of us to make a decision on reducing doses or even to carry on but it does need talking through with your team to come to that choice.

I'm lucky with mine ,they are very good  I either go to see him or he phones me after a week  after every cycle to go over how things have been .Even the nurses are involved so if I need to ring them they know whats been discussed or they contact him for answers to any questions or requests I have.

I also am one of the lucky ones to have gone through EC with only tiredness effecting me more than it would of in normal times but my 1st Docetaxel completely wiped me out from day 5 after and  I have suffered badly with side effects so much so he as cancelled the next round until I see him face to face which is in June.

We are all very different in how our bodies  react so please get in touch with them soon you need some peace of mind  and at least you can plan ahead 

Good Luck and Take Care 

Thanks. I do feel I’ve turned the corner somewhat this morning…still pretty pants but not as bad as last few days.

im not really happy with the one appointment either but not really one for making a fuss and I can’t work out what’s normal.  I do feel very cut ‘adrift’ but I guess they just go off the bloodwork. I don’t want to be a nuisance or have them think I’m expecting loads of resources etc. I’ll give the chemo nurses a ring. Last time I called the Christie hotline I just got referred back to my GP. Just find it all a bit poor compared to the time others seems to get with their oncologists on here. I suppose being a large city (Manchester) they are just swamped. X

Ring them and insist ,  YOU ARE NOT MAKING A FUSS!! they are there to help you 

Glad you're a tiny bit better take it easy and let yourself rest its a whole new experience our bodies are dealing with

You sound like me for not wanting to pester but I was told not to wait if I needed them ,so when I need them I do ring 

but I do have a direct line to mine

If they can do anything it will at least make you feel more in control or try the Macmillan nurse helpline on here

Manchester is large compared to my Trust but YOU ARE IMPORTANT and need to get this sorted so please ring them and tell them everything 

Let me know how you get on