Hi everyone !
Day 3 after EC 1 and was still nauseous , but no more vomitting !!! Bone pain started in my left hip and severe stomach pain, SE's of the stomach injections, but I coped with paracetamol and ibruprofen as advised by the chemo nurse.
Day 4 and no nausea at all ( hurrah !! ) , but I will definitely take the advice given by you ladies and ask for Emend anti-sickness tablets before EC 2. Stomach pain has gone now and just twinges in left hip. Visited my parents and decided to wear my wig as , although I'm not expecting to start losing my hair until next week ( I didn't use the cold cap ) , my hair has become uncontrollable due to not using hairdryer, straighteners etc. Felt quite glamorous in my wig until I also wore it to Asda on day 5 and the fringe started moving further and further backwards in the cafe as I hadn't pulled the wig down properly at the back !!
Today is Day 6 and my gums are sore and the inside of my mouth feels burnt, as if I've eaten something too hot, but I was given Difflam mouthwash by the chemo unit, so have started using it for the first time today. Hip pain has now moved to the right hip instead but I've not needed painkillers.
Hope SE's for everyone having chemo are also minimal.
Hi riversidedawn, it's great for me to have the treatment at home as I work as a Med Sec at my local hospital and didn't want to be a patient there and keep bumping into colleagues feeling sorry for me. The nurses always phone in advance to arrange a convenient time but I am lucky that I'm off work at the moment so it isn't a problem. I have now had 4 different nurses, one just to do the Neulasta injection, but they've all been fine. I have bloods done the day before at home also.
Hi all, just an update now that I've had my 2nd FEC on Tues 30/12. I am having all my chemo at home so had a different nurse this time and I think she put it through slower so I didn't feel so woozy or get the metallic taste this time. Unfortunately my neutrophils were down to 1.1 so I had to have a G-CSF injection the next day called Neulasta (a long lasting one so only one needed thank goodness - it was a bit painful) and I will have to have this after every cycle from now on. So relieved as I really am sure I couldn't inject myself. So far I haven't had the bone pain/lower back pain I was warned about. My hair came out easily if I pulled it on day 13 after my 1st cycle (22/12) and it hung on until Mon 29/12 when my hubby shaved it off. I have kept some "stubble" for warmth so have started wearing scarves and hats and wore one of my wigs on New Years Eve at home. A bit sad putting the hairbrush/hairdryer/straighteners away. I have also taken the Domperidone this time and really haven't felt sick, just a bit of heartburn. So all in all really not feeling too bad. Next one is 3 of 6 and will be half way - yay! Hope you are all getting on OK and looking forward to a healthier 2015. My New Years resolution is to lose some of the weight I seem to have put on quickly over the last month, get fit, keep the blood pressure down and give my body its best chance of getting through the treatment.
thanks Carolyn for letting me know how things are with you I just wish that I could have started with you.hopefully will get my first chemo on wed 14th jan the day before my birthday.we can then comp..`are symptoms.doing my exercises to help with the cording but not yet helped take care
Hi everyone !
San1952 - sorry to hear that you didn't start your chemo as planned, it must be awful to get yourself all prepared to start, then to be delayed.
Just an update, yesterday was Day 1 after my first EC . I got up to have a banana so that I could take the steroids and anti-sickness medication , but I vomitted an hour later , so that was a waste of time !
I felt like I had a bad hangover all day and night, i.e. headache, nausea and hiccups (!! ) and I had a burning sensation in my bladder which I know is caused by the chemo, so I drank cranberry juice, which helped. My pee was luminous orange (!!), which I know is also caused by the chemo.
I did manage to keep the second dose of steroids and anti-sickness tablets down after eating my lunch and was not actually sick after that.
District nurse came in the afternoon to show my OH how to inject the white blood count booster drug into my stomach for the next 5 days. The needle is only tiny , so not too bad. Apparently usual side effect from the injection is bone pain which should start tonight or tomorrow, not looking forward to that !!
Last night I only managed to get 1 hour's sleep, which I think is due to the steroids ( and not helped by my OH's snoring !! ) but I had taken them all by 12.30 pm, so I was a bit surprised about that.
Today ( Day 2 ) , I had to jump out of bed at 7.30 am to run to the bathroom to be sick. I had felt nauseous all night whilst I was awake, but felt better after vomitting. I than had a banana and first dose of steroids and anti-sickness medication and was fine this time.
I took the second dose of steroids and anti-sickness medication at lunch time and was fine. I have now taken all my medication as I was only given 2 days' supply, but I was also given some different anti-sickness medication which I can take as and when I need them.
OH gave me my second injection this afternoon, no bone pain yet !!
I still feel nauseous, but it's not too bad, and obviously I'm really tired due to not much sleep, but I do feel better today. Not sure whether I will get any more side effects tomorrow without any steroids, but will keep you posted !!
carolyn 7 didn`t get my chemo today it has been postponed for 2 weeks as I had to have my seroma drained again yesterday.felt very down today as you get prepared mentally mentally to have the chemo I even got extra water,ginger biscuits yesterday before I found out .It will be good to read your experiences and it will give me an idea what I might expect.good luck
Welcome to the Group, Marli !
Just had my first EC today after a 2 hour delay due to staff shortages. It wasn't as bad as I thought it would be. I felt slightly nauseous but after eating some soup when I got home, this has passed. Still feel a bit spaced out and I'm quite tired, but that is due to not sleeping very well last night due to fear of the unknown !!
Received a 'goody bag ' with 2 days' supply of anti-sickness drug Ondansetron and steroid Dexamethosone and Difflam mouthwash. I also have 5 days' supply of Filgrastim injections which I need to self-inject into my stomach, but my other half has volunteered to do it instead!!
How did you go on today, San1952 ?
Hope it all goes well for everyone else who is having chemo this week .
Can I join your group please? Just had my first chemo yesterday and today - over 2 days to check not reacting to the Herceptin part. Today was the Tax part, so used cold cap which was much better than anticipated.
This is a recurrence but is now HER2= hence the Herceptin. Used the forums 5 years ago and they were a real lifesaver, really kept me going , so am looking forward to meeting a whole new group of ladies. I am part of a Facebook group for ladies in the NorthEast who I met last time and we are still great friends going out for meals several times a year. Look forward to reading whole thread over next few days. Wishing everybody a Merry Christmas. xx
I see my chemo nurse on 29th December to discuss the chemo treatment,sign the consent form and to have blood taken, ready for first EC on 31st December
I'm not sure whether the antibiotics are given as standard - I doubt it as, reading this forum, it seems that everyone gets their own individual treatment plan. I guess it depends which chemo drugs you are being given and your hospital's policy. Main SE for me so far has been a headache which I'm prone to anyway so not too bad.
going away for 5 days over christmas so I`ll get in touch when I get back seeing the chemo nurse the day before my first chemo to find out all about it.Have you met yours yet?
Positive thought for you Babs, I had first chemo on 31st October, felt nauseous and extremely tired for 5 days, hair started falling out around day 14 (just thinning nothing serious!), 2nd round 4 weeks later (delayed by a week because of an infection), they adjusted my drugs so didn't feel anywhere near as nauseous or tired..... so make sure you tell your oncolgist exactly how you feel so he/she can adjust if necessary. 2nd time round no hair loss at all and I'm now 3 weeks on and still nothing, so it isn't so bad!
That's the positives, unfortunately had another infection so round 3 delayed until 2nd Jan (should have been yesterday). But they were on the ball and dealt with it.
It seems that for some there is an accumulative effect, for others it gets better if the onc adjusts the meds so keep talking and keep positive xx
Thanks for posting, it's good to hear some positives. I had my first FEC on 9/12 and apart from feeling quite woozy at times during the actual chemo and a slight strange taste in my mouth it was not as bad as I thought. I too have good veins in the back of my hands luckily (that was such a relief as it is the only place they are good) so it was not as traumatic as I thought. I did feel queasy for the first few days but apart from that I was fine. I know it might get harder as time goes by (I am due 6 cycles) but am determined to get through this. Reading others experiences really helps but hope more people post with the positives rather than the negatives as you can get a bit overwhelmed by all the different side effects and really worry yourself. Hope you and all your fellow December Angels are well. It's good to communicate with those that have already been through it and come out the other side.
San1952 - yes, we can do this together, no alcohol for us, though on New Years Eve, so I will be celebrating on Christmas Day instead !!
Brewster - unfortunately I don't use Facebook, but thanks anyway
Sheila - thanks for letting us know how your first EC went. That's great that the SE so far don't include nausea. Do you mind me asking if the antibiotics that you will need to take is standard, as I thought that it would just be steroids and anti-sickness medication that I would need to take ?
Had my first cycle of EC yesterday and so far so good. Only took an hour - apparently I have a very good vein - and up to now I'm feeling fine. I did have a headache but I think that started before and I'm prone to migraines so not sure it was caused by the chemo. I took one of my migraine tablets and am fine now.
I am slightly concerned that I have to start taking antibiotics on Christmas Day as that's when my resistance will be low but I don't have a lot of family around anyway so should be fine.
So take heart those of you who haven't started yet - it's not as bad as you think and the nurses make it much more bearable.
Welcome to the forums, you've come to the right place for support as the users of this site have a wealth of experience and knowledge between them.
If you would like to talk to someone in confidence you may like to phone our helpline where you can talk to a member of staff who are there to support you. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.
Please could I join the December 2014 starters ? Hospital phoned me today to tell me that I start chemo on New Years Eve !! I will be having EC every 3 weeks for 3 cycles and then 3 cycles of Docetaxel.
I had single mastectomy on 3rd November with immediate strattice implant reconstruction.
Yep or if you just send me your email address by private message here and I'll send you an invitation. Simple.
Do come and join us!
It's horrible when they change the plan at the last minute - you get yourself all psyched up for one thing and then they tell you something else is going to happen. I think the best thing you can do is keep reminding yourself that they are doing what is best for you and things might change as they get more information.
I hope the scan results come soon and that they are ok.
And I hope everything goes well tomorrow. I had my first chemo yesterday, and last evening and night was a bit rough but I feel much much better today.
Take care, Emxx
Just popped in from December Angels 2013 to wish you all the best in your treatments,
I was in the same position as you all a year ago and know all the anxieties etc you are all feeling but you will get through it and time passes quicker than you might think.
Just keep supporting one another, be good to yourselves and take all help offered.
Well I went on Tuesday to have the markers put in and when I got to the hospital I was taken to see a doctor who told me that they had changed their minds and I wasn't having it done after all. Apparently, the cancer is not in a single lump but in 'strands' so it might not be useful to put in markers and may be just an unnecessary procedure for me to go through.
Still waiting for results of all my scans which is a bit nerve wracking but hoping for the best. I have my first chemo on Friday and hoping to get through it as well as many others on this forum.
Good luck everyone
I am new to this forum aswell and was diagnosed 4th Nov with lobular and + lymph node involvement too. V. lucky it was picked up as nothing showed on a mamogram and it was only a very eagle eyed radiograher that picked up some unusual looking cells but I was told at the time it was unlikely to be cancer. I had a lumpectomy and total lymph removal on left side two days later, thankfully clear body scans and now embarking down the chemo route 4 x EC and 4 x Tax, then radiotherapy.
Cold capped the first session and it was more than bearable, but I have thick hair so perhaps the cold didn't penetrate as much (!) - it will be interesting to see if it works. Felt terrible for the first couple of days, but since then taken it carefully, and eating well. Kept away from crowds this week to avoid bugs only for DH to go down with a stinker of a cold. My next session is xmas eve.
I am so glad I have found this charity which has already been a support. I phoned the help line during a particularly dark time when I was waiting for my scan results and I had a long conversation with a volunteer which really helped pull my out of that dark place.
Thanks for the reassuring words from those who have already been through this - it's so lovely that you take the time to come on this board and share your experience. I'm feeling better about having the chemo first now - seems a good idea to get working on the cancer as soon as possible.
I'm steadily getting through all the necessary tests - MRI yesterday, CT scan today and bone scan to come on Thursday. I'm going to have markers put in on Tuesday - bit like a bookmark I guess which is appropriate for me
Good luck to everyone
Sorry to hear you have all beeb diagnoised and are starting treatment. I have written a blog about my experience to so others can see that it doesnt always have to be horrendous. wishing you all the best ladies
Welcome to the BCC discussion forums, you've come to the right place for some good, honest support from the many informed users of this site who I am sure will be along soon to help.
In the meantime if you need to talk to someone in person and in confidence, then our helpline team are just a free phone call away, 0808 800 6000. Lines open weekdays 9-5 and Saturdays 10-2.
I was diagnosed on 28th November (Black Friday appropriately) and am due to start chemo on 19th December. I will be having EC every 3 weeks for 4 cycles and then 4 cycles of Docetaxel with Herceptin. I was quite worried about the fact that I'm being given chemo before surgery but other threads on this forum have reassured me that this is not such a scary option. Is anyone else in this position? I feel as if most people on the forum are much more knowledgeable about their diagnosis and treatment and I have a lot of questions to ask to catch up with them! As has been said before, really good to have the support of others going through the same thing.
I got my letter this morning and am starting chemo on the 17th. Nice Christmas presie!!
Weird to see all the appointments until April set out in black and white - suddenly it is very real and very scary.
At least reading about other peoples experiences makes me feel a bit more prepared for what might happen. I know my kids are worried about how I/they will feel when I lose my hair. At the moment I don't think I can really imagine what it will be like. At least having chemo through the winter I have a good excuse for wearing a big wooly hat. 🙂
I'm worried about the indigestion that Mrsmogg mentioned - I have gallstones that have caused me to have acute pancreatitis in the past, and I definitely don't want that again. Seems ridiculous now that I put off having my gall bladder removed because I don't like hospitals, and now I am there practically daily.
I am also quite apprehensive about the picc line, both having it put in and living with it afterwards. How would I have my blood pressure taken for example if they cannot use my lymph node arm and cannot use the picc line arm?
So many questions but I am sure it will all work out.
Take care ladies,
Thanks for your reply. I am having my bloods done on Monday and then my first dose on Tuesday 9th all being well. I just wondered if there is anything I should or shouldn't be doing these few days before (although got daughter's 18th birthday party this weekend so it won't be a quiet one!), maybe boosting iron that sort of thing? Just anxious to get started now so I can look towards the end. Will keep reading the forum even if I don't post (depending on how I feel next week) - it's good to hear from others in the same position and those that have already been through it and survived! Sometimes you can't imagine getting through the other side and wonder why you are poisoning your body for so many weeks. Have to remember that this is short term pain for long term gain.