Hi Ladies. So sorry for those of you who are having a hard time. I wish I could say I felt left out....but no, I would really give it a miss if I could. However, I'll be starting on Wednesday with the first of 4 fortnightly EC, and then 4 fortnightly Taxol.
I had my port fitted last Thursday, so am hoping that's Good to Go on Wednesday. The surgeon who fitted it warned me that they can move or tip sideways, particularly in the (ahem) "larger" ladies, so as I'm fairly well endowed in the booby department, I'm now fretting that it's tipped sideways and they can't use it. Ive had a full clearance of lymph nodes on one side and sentinel nodes removed on the other side, so I'm not keen on my arms being used, and the thought of my legs/feet being in used scares me witless.
I toyed with the idea of fasting, but couldn't square that with needing to eat for the steroids, so I'm low carbing with the hope that I'll be in ketosis for a few days around each treatment. I have a headache already!
Actually, I just want to get on with it now.
I'm on Day 14 but I am cold capping. I'm also being really careful with my head and hair. I have had some tingling sensations but am avoiding washing my hair frequently - I used to be an every other day hairwasher but dropped that to every three days and longer if I'm hanging about the house.
I have already had my hair cut shorter which means no tangles to worry about and in general just trying not to fiddle with it. In general much as I would faff with my hair for ages in the morning when getting ready for work after that I would leave it alone all day - so no real change there then lol!!
You seem to have been through the mill for your first chemo regime - if it's not one thing it's another. Your local pharmacy would be able to suggest something for the piles. I was constipated for a while but senna sorted that after a few days but I too had small amounts of bleeding because it was so sore but this is easing off just by applying E45 on a tissue after doing the business!! It's a shame your GP won't prescribe without seeing you - a quick chat with my doctors receptionist has so far resulted in prescriptions when I have needed them without taking up her time with unnecessary appointments when it has been on the recommendation of the chemo nurses.
Hopefully you will start to pick up and feel better soon - when you feel a little more like yourself - it's much easier to cope with stuff and stick a smile on your face!
How is everyone doing?
I am now day 13 since chemo, has anyone lost there hair yet or started to?
Been a&e twice so far, passed out on day 5 and then throat infection a week later. almost finished antiotics but of course they caused thrush and now have piles due to direrreah it wont stop beeding I had the hopsital check them and confirm its that but they gave me nothing so suffering. where i have the boys home from school i dont really want to drag them doctors and i know my gp wont give me nothing without seeing me. Anyone else had piles yet?
take care all xxx
mumofmany please contact the hosp re your shin, red and hot suggests infection which needs to be dealt with asap. Don't feel bad about calling the chemo line, I was the same...waited hours on Sunday with a high temp and dizziness before calling them and ended up back in hosp.
well I'm day 8 and had my best nights sleep so far... 7 hours is a record for me!
One thing I have noticed is that my temp is up nearly all the time.... But I'm feeling better by the day. Not sure if it is likely to continue like this through to chemo round 2 but lets hope so!!
hope every is having a good weekend and not feeling to poorly to enjoy a little of the sunshine ☀️
Im glad I'm not the only one feeling 'banished' from work as well!
Sorry to hear you are feeling rough but you need to be gentle with yourself. To begin with your body is throwing up all sorts of reactions and it's hard to know what to do with yourself - whether to treat yourself with generic treatments or call your chemo department.
I'm now on Day 12 and although some side effects are still there - they have either reduced or I've just toughened up lol!! So whereas last week long planned events have had to be cancelled because I couldn't cope or felt too ill - this week although near the end of my riskier week for infection - a meal out with mums and daughters for a Dirty Dancing themed evening is happening and a weekend away to my sisters is planned for half term. So far I have missed out on a Wedding reception and long planned Theatre night out - but they really don't matter if you can't handle them at the time. My first evening after chemo - you could have told me I'd won 162M on the lottery and I wouldn't have cared because all you care about is how you feel at the time which is beyond iller than ill!!
So look after yourself and don't feel guilty if you are laid low or unable to cope - it will improve and try and plan for something nice -even if you do have to move the goalposts!!
Hi everyone. I had my first chemo on 14th had a bit of sickness on Tuesday but a call to hospital and more tablets given all ok .t Today I had my last injection which was not as bad as I thought having to do that myself .My tastes have changed and I have gone off tea but everything else is going well. I even went out last night.
I hope this continues but I am very positive about it all anyway . It's nice to come on here and see how everyone is getting on I have seen on here that people start to loose their hair round about day 15 so let's wait and see.... Wigs and scarves all ready and waiting . Stay strong and positive everyone we will get through this . Sharz
Five days after first EC session I had my best nights sleep 12 hours straight through, woke at 8.30 and feel the worst i've felt all week, took temp which was 37.3, took it again 20 minutes later and was on the way down so ok there. Feeling quesy but not sick just very out of sorts really, am spending the rest of the day on the sofa and see how it goes, drinking plenty and trying to eat snacks rather than a meal but everything today tastes different as well.
Hopefully will feel better tomorrow and get out for a walk.
Hugs and best Wishes Mary xx
thank you for your advise - I will check with my nurse about the Gcfs injections. In the meantime the antibiotics have kicked in an di'm drinking plenty. My nurse is great and rang me twice yesterday 👍
1 down 5 to go.....
hope everyone has a good weekend
everyone reacts differently to their chemo. You are likely to be on steroids at the moment, which is great. When you stop taking them, you may feel more tired - however if you are not feeling nauseaus now, you may be able to avoid it for the rest of this cycle.
Please be aware of consitpation - if you have not 'been' for 2 days then it might be an idea to take Senna to help things along.
Sorry to read that you have systitis. And you are right - it is the E in the FEC, which is very hard on the kidneys and urinaty tract.
I am also prone to cystitis hance my oncologist put me onto the Gcsf injections. Those together with drinking plenty every day got me through my 6 FEC treatments without cystitis.
Hope the antibiotics sor it soon.
I would suggest to discuss with your bc nurse and oncologist that you are prone - to see whether they might findways for you to avoid those infections.
had my first FEC on Tuesday, started to feel fuzzy headed, tired and nauseous as the day went on...it was around 11.30 when my infusion started.
we're all different and reactions vary. Today I'm still nauseous but the fuzzy headiness has gone, still tired though. Bout of cystitis this morning so a quick trip down to surgery. Fingers crossed you stay se free.
Sue/ everyone else suffering severe nausea - please do take care if you are drinking a lot but are unable to eat much, particularly if you are also being sick or have diarrhoea, because your sodium levels could get dangerously low. This has happened to me on two occasions following my first and third FEC treatments, and both times l had to be admitted to hospital as an emergency (the first time it also caused cerebral oedema). The warning signs if your sodium levels are abnormally low are that you will start to shake uncontrollably and feel confused, and you may also get blurred or double vision. I hope this doesn't happen to you or to anyone else, but if anyone does start to feel like this, you - or someone with you - must phone an ambulance immediately, and must make it clear to the ambulance service that you are a chemotherapy patient, so they will treat it as an emergency. It is vital that you get to hospital promptly and that those who are with you are able to explain your situation and tell the doctors and nurses about the medication you are on (better still, gather up your chemo records and medication and chuck it all into your hospital bag - See Chemotherapy Tips and Tricks Thread for details - to take with you before the ambulance arrives).
Good morning everyone,
had my best nights sleep post Chemo, (3rd night), but woke to cystitis! Am prone anyway, but I was told that one of the drugs can bring it on. So a quick call to my Chemo nurse, and a call to my surgery, I'm heading down to pick up some antibiotics which hopefully will do the trick. Flushing has disappeared and nausea subsiding.....
hoping to have a reasonable weekend as my son is coming from London for the weekend 😍
Hope everyone else's side effects are subsiding - have a good weekend everyone.
I am also on AC x 4 every 3 weeks then 12x weekly Taxol & had my first one on 10th Oct so I'm a bit ahead of you.
I was really sick on day 1 & had to call hospital then woke up flushed the next day & felt really nauseous & tired all the first week. I managed to get out for a walk with my dog every day but didn't do much else & had no appetite whatsoever I even found it a struggle to drink.
I was on steroids & anti sickness & daily injections.
This week I have felt absolutely fine thank goodness so I can cope with 1 week out of 3 for only 3 more sessions although I will be asking for stronger anti sickness next time !
Hope you are ok hang on in there it gets better
ps are you triple negative ? I think that is why I am on AC.
Hi Julie, welcome 💐
You have a similar plan to mine. I had lumpectomy a month ago but they found it was in all of the breast tissues and lymph nodes. So much awaiting full ct scan results at the moment and started chemo last week. Will have 6 rounds FEC-T, then mastectomy and radiotherapy like you. Mine is also Her2 positive.
It is such a huge life changing diagnosis and I definately struggled with accepting that I couldn't work whilst having treatment ( I work on front line NHS and imuno suppressed is a no no ) Everything that as my normal routine has gone and I found that adjustment very hard.
I think the best advice is that everyone reacts differently to the medications and chemo and just take it one day at a time. Don't plan too much as it then puts pressure on you, if you feel up to doing something then just go with it. It's a massive learning curve, I've kept a diary of my side effects from this first chemo so that I know what to expect and when, when I have the next session.
You sound very positive and that's a great starting point for the chemo, there is a list further down this thread called a 'chemo caddy' which is really useful to have ready.
Hi there, i'm new here. Diagosed with invasive ductal oestrogen+ and her2. Was told today its in my sentinal lymp which biopsy'd last week. Plan is chemo to start 28th oct, x6 cycles, fec-t. Then mastectomy them radio. Already feel like its a rollercoaster of never ending appointments! I'm feeling positive and will get through it all, work are really good and supportive too. I also get lots of support from family and friends. Ive been told all the side effects like hair lots, sickness there are so mary of them! Would love to hear whats the most common side effects, when to expect bad days etc. Thanks for everything xxxx
Thanks Sue HS , I kinda guessed that would be the answer but the thought of bobbing around in warm water is very appealing right now. Will have to make do with the bath! 😂
SueBond, yes definately had the flushed face and it comes and goes with less frequency now. I'm day 6 post FEC and just feel like I'm getting myself together. I do however seem to have complete vacant episodes where my family will ask me something, and although I know I have the answer somewhere in there I just cannot get to it! They just laugh and give me a hug 👍🏼😂!!
Sorry, one more thing....
brain definitely not functioning properly - couldn't put the coffee machine together this morning - been doing it for years!! 😳
day 2 after Chemo started - anyone else flushed in the face - am looking really embarrassed all the time!🙄
Not too bad an se I know....
still a bit nauseous and am not sleeping too well, but otherwise my body seems to be coping ok. No sign of any of the dreaded hair loss or constipation yet - but don't want to speak too soon!
will attempt a mini walk out this afternoon round the village - no shop to wander to yet, nearest ones are driving distance so I think I'll wait another day or so before I attempt that.
hugs to everyone - stay strong and positive.
Just had a call from my GP to see how I was doing and was feeling a little sorry for myself...then logged in here and read your post...I had exactly the same craving yesterday! Beef stew with dumplings! Made me laugh so thank you!
Well done you for driving, I'm still not feeling confident enough but it's bugging me every time I look out of the window and see my car (only got it 2 weeks before diagnosis) and I so want to get out there.
Three days since first treatment and still have headaches and feel slightly woozy, woke at 4am this morning feeling sick but turned out to be the other end (took your advise Sue H-S and started on the Senna on day one had to also resort to snacking on prunes and the odd dose of Lactolose) but hopefully it will get better now. Last day of tablets and still have seven injections to go, quite proud to be doing it myself as I don't like needles.
I had to make appointments for having my Picc line flushed at the Chemo unit as the only Community ones were a 36 mile round trip away, have been driving but not confident with that distance at the moment, they have put me on a waiting list for something closer so fingers crossed.
Hairloss has begun but just my eyebrows and arms at the moment, trying to stay on top of it all but realise there will be down days. A walk this morning for the papers and some fresh air and then chair and tv.
Re cravings really fancied beef stew so hubby made one last night for dinner today, might just have to have some for lunch!!
Best Wishes and Hugs to all Mary xx
Hi everyone, big hugs all round 😍
Thank you Dawn for all of your advise, very helpful and without going into too much detail doc gave me movicol and co-danthrusate with quite drastic results after 2 days...... Eek!
To Liz, I was sure I still had an infection when they started my chemo last week but they said not and went ahead with it...I ended up back in hospital with the infection in Sunday and have spent the last 3 days feeling drunk and unsteady on my feet due to this on top of the chemo effects so it's def better to wait although I totally get your anxiety over this.
Today is the first day I have felt steady enough on my feet to go downstairs and make myself a cuppa so I'm hoping I've turned a corner...
One thing I have found is that I need some time on my own, it's lovely to have supportive family and friends around but I just haven't had the energy to put on a smiley face, so today I have made sure I'm on my own at least until my children come home from school. I feel like I'm letting them all down when I cry and get low but it's important to get these emotions out. I'm still waiting for body scan results to see if it has spread, appt is with oncologist on Monday. Keeping everything crossed that I get good news as every time I've gone for results so far it's just got worse..
My daughter is 15, struggling with her own diabetes and trying to 'mummy' me at the same time. Thank goodness it's half term so she can have some lie ins.
Still stuck in the 9pm - 1am sleep pattern.... 4 hours is as much as I can seem to get 😨
I'm finding this site and al of your messages a massive comfort so thank you so much
Well done - number one over!
You may be on steroids, so you may expect to be more tired, once you are off them. As you progress through your cycles that tiredness may become worse. It does with some, others fare better. AC chemo does not seem to be very common, so I hope there may be some one else.
At a guess, you know the reason for the advice re 'outside' food. As I do not know in which country you are being treated, it is challenging to comment. But I and many others, certaily understand 'cravings' - it seems to be a very common thing, when going through chemo.
Here in the UK I did sneek the odd cheese burger from McDonald's, as I am comfortable with their hygiene and cooking methods being up to required standards.
i'm 24hours post my first Chemo too...FEC. Am also loaded with meds still.
re the Burger, my nurse told me, if we were going to have a takeaway have something we were used to (not too spicy), and from a place that you've ordered from/eaten at before. A Kitchen you trust
If you fancy a Cheeseburger I'd have it. 😊
Ask for omeprazole for the heartburn - do not suffer! I replied about your back pain but in case you missed it, you have to take claritin hayfever tablets:
24 hours passed since i took the fist dose of chemo AC and feeling quite ok so far may be because i am loaded with anti-nausetic medicines yeah....??
Couldn't arrange any cold caps in my country so all ready to wear those pretty scarves my daughter got me before chemo. I am advised not to eat any outside food but i am badly craving for a cheese burger, not sure if i can have it 😞
What shall i expet in next 4-5 days ladies?? Any one else taking AC regiemn with Taxol later on?
Hugs and prayers for everyone fighting cancer.
I can empathise with you entirely because this happened to me but perversely in the end I was quite grateful that my tummy wound had an additional week to heal. It is frustrating because you will want to move on but hopefully the antibiotics will boost whatever needs a little help.
The oncologist did say to me that any wounds that are there at the start of chemo may well still be there at the end of the treatment regime simply because the chemo will attack the good guys as well as the bad ones. My dressings are being changed twice weekly with a visit to the surgeon fortnightly at the hospital so that she can monitor the wound to her satisfaction.
I'm now on Day 9 of my first round of chemo and am keeping a diary of temps and side effects. Heartburn has been a totally new experience for me and I now have to try and eliminate the foods that may act as triggers for that.