I am really interested to know if SE become predictable with each chemo cycle. I have just had my first (FEC), but then got some strange nerve problem, so I can’t really monitor the symptoms related to the chemo and those that are not. I feel I ned to do this so that I can start to think about when I may be able to attend work over the next 6 months, or in fact, do domething more interesting than hang about the house - which will send me crazy!!!
Sorry = I realise this is in the wrong thread but can’t find how to move it to somewhere more relevant!
Like you, I’ve just started FEC, so I’m not able to answer your question directly and personally, but if you check some of the threads that have been going on for a while, you will find that some things seem to be pretty common at any rate, while others appear to be more individual. Try ‘The pink road of chemo’ for one; many of those ladies have had FEC. And join us on ‘Anxious about starting FEC in January’, we’re comparing experiences and SEs as we go through this together.
I know what you mean about not being sure whether something is an SE or not! And about going stir crazy at home, since I was told quite firmly that I should not go back to work (education) due to winter illnesses.
I’ve just dug out the hand-written notes from my oncologist, and she listed 6 clear ones: 1: Hair Loss; 2. Nausea and Vomiting; 3. Low white cell count 4. Premature menopause and osteoporosis 5. Cardiac side effects (eg: palpitations) 6. Another cancer (the e in FEC has a 0.5% change of causing this)
Her ‘how to fix thems’ were 1. Cold cap (not always effective, and some slight increased risk of cancer - not proven though); 2. Ondomsetron, dexomethasane, Domperidore (can’t read her writing so spelling not quite right and there are many other drugs too) 3. Blood tests before each chemo will determine whether this is a problem and if so, chemo will be delayed. You may also be given injections for a few days at the beginning of the next chemo cycle to prevent it happening again. 4. Can’t see what she said about this 5. this is prevented by monitoring before treatment - but she said I should call the hospital if I suffered from these 6. Very low risk, but this will be monitored too
But there are so many others that we have all experienced and the threads that Cheryl suggests are a good tip.
A short-list would be: metallic taste in the mouth, sore mouth and throat (sometimes thrush), extreme tiredness combined with not being able to sleep (often a result of the anti-sickness which are sometimes steroids), itchy or painful scalp around the hair follicles, spots (due to lowered immune system), weight variations (due to need to eat or lack of need to eat), forgetfulness!
But, if there is anything that doesn’t feel right, it is always better to call the BC nurse and check as just because they are SEs doesn’t mean they shouldn’t be treated.
Anything helps that comes from people that are or have goingf/gone through it! Thank you.
Annie everything you have listed, except for the paalpitations, thank goodness, I recognise. I’m taking Domperidone for anti-sickness when I need them - and they are good. I am also taking loads of other things for an inflamed nerve in my head - had this a week now, but I think the drigs are just masking the pain rather than curing it. Need another trip to my GP. Just don’t want FEC#2 to be delayed - due on 27th Jan. Want to start ticking them off now that they have started!
My FEC 2 was delayed as my neutrophil level hadn’t returned to a safe level. It was delayed 5 days, and I had to give myself injections for 5 days after the FEC 2 to prevent it happening again. Sounds scary, but it was just into the pinch of fat around the belly button and really didn’t hurt. Luckily, they kept my FEC 3 (Jan 24th) as the original date, so I’m back on the same track - despite the delay.
Hope the doctor sorts you out - have you had your flu jab? If not, it might be worth checking with your doctor when you see him/her.
Whooa! That does sound scary - but thanks a lot for the heads up. Do you ever manage to plan anything in advance. I do like to have thinks to look orfard to to stay positive.
Well, probably not the right place to post!! But as my brain is addled … I had my 4th cycle of FEC last Tuesday. SE are very bad this weekend, but the one that is bothering me the most just now is my sweaty head!
I don’t like my wigs - even though others say they are good - and mostly wear little jersey caps at this point when I’m not seeing folk. But waking or just sitting here with sweat pouring from my scalp (bald of course) is driving me nuts. It hasn’t been as bad on other cycles … OK so it is a little warmer out now, but I rarely get out …
rambling again. Thoughts on keeping cool and fresh anyone reading?
Hello Bat-E
I can;t help as I have only had one FEC next one due on the 27th Jan. I have had loads od SE already, so not looking forwards to the next 6 months.
Your issues sound awful - due you thi k it might be related to the unnatural onset of the menapause - I don’t know how old you are. They said it would happen To me.
Hope you find some comfort, and advice from them that know, soon.
Hi Lotty
I have just finished FEC4 and have found that I have had similar side effects each time but they are getting slightly worse each time. (combined effect of all chemos so far).
I have had to give up work this week (Have worked 35 hours a week since start of FEC in October) but am feeling too tired to continue with long hours.
Like you I have had nerve issues with pins and needles in hands, arms and feet for each of my treatments. I have also had palpitations this time through (which worried me) but they are keeping me on watch and do not seem to be that worried.
Many people on the forum have said that the side effects are the same each time so I think it is individual thing. Hopefully you will not find it is worse each time.
Hi Lotty
I have just finished FEC4 and have found that I have had similar side effects each time but they are getting slightly worse each time. (combined effect of all chemos so far).
I have had to give up work this week (Have worked 35 hours a week since start of FEC in October) but am feeling too tired to continue with long hours.
Like you I have had nerve issues with pins and needles in hands, arms and feet for each of my treatments. I have also had palpitations this time through (which worried me) but they are keeping me on watch and do not seem to be that worried.
Many people on the forum have said that the side effects are the same each time so I think it is individual thing. Hopefully you will not find it is worse each time.
Hi Lotty
I have just finished FEC4 and have found that I have had similar side effects each time but they are getting slightly worse each time. (combined effect of all chemos so far).
I have had to give up work this week (Have worked 35 hours a week since start of FEC in October) but am feeling too tired to continue with long hours.
Like you I have had nerve issues with pins and needles in hands, arms and feet for each of my treatments. I have also had palpitations this time through (which worried me) but they are keeping me on watch and do not seem to be that worried.
Many people on the forum have said that the side effects are the same each time so I think it is individual thing. Hopefully you will not find it is worse each time.
All I can suggest, Bat-E, is something like a damp flannel or a fine spray to give you some evaporation cooling. Or you could wet your caps a little. Obviously that may not be so good at night, as you don’t want a wet pillow, but perhaps if you wrapped something like a tea towel round the pillow, or used two pillowcases, that might help.
Lotty, it is hard to plan ahead as the ses can be worse each time. After FEC 1 I told my boss I should be OK to work a couple of days in week 2 and most of week 3 and I did go into work. But then after FEC 2, I would have been OK to work week 2 (except it was between Christmas & New Year) but was completely lacking in energy week 3. After FEC 3 I stayed in bed 2 days during week 1 as I felt so rough. This is week 2 and I could perhaps do bits of work but I get worn out just walking upstairs.
Hi Lotty,
I agree with Nottsgal, you can’t really plan. Everyone is so different in how severe the side effects are. I did find that for me the SE’s were fairly similar for each of the 3 FECs I’ve had, but for many they have varied. I certainly found that although I felt better in myself after about 8/9 days, I lacked energy until about 16 days. Then in the few days you feel well, it’s appointments for blood tests and the onc etc.
I’ve had 4x FEC so far and have generally managed to work full-time two weeks out of three, but with employers being very flexible and supportive as have had problems with low WCC delaying treatments and two admissions, one for sickness and one for neutropaenic sepsis. Although basic SE’s have been the same each time, there always seems to be something new and generally just annoying each time, i.e since FEC3 have had menopausal symptoms. I definitely can’t do much at all but give in to SE’s for a week after each cycle,but its helped keep me sane getting back to normality for the next 2 weeks. BB