Bless you it’s awful. I’m really struggling this time. Joint pain, breathlessness, heartburn, bladder irritation and I’m dreading the Docetaxel
Agree re the exhaustion Naomi40 - I have had very little in terms of side effects since the first cycle but the fatigue and exhaustion is really difficult- I seem to have no stamina whatsoever. Makes me feel utterly useless 😔
Hi pink flamingo
I can kind of relate, had 3 lots of fec and just waiting for a scan.
I had breast markers put into my tumours and I was told they had shrunk a bit but this was nearly 2 months ago and now I also experience pain in that area and my hair is starting to grow back and it makes me doubt how effective it really is.
I hope that you are doing okay and it’s just that you need to have the last lot of chemotherapy to make the difference.
Sending hugs to you as I can just imagine how frustrating it all can seem
Not long finished my 3rd cycle of neo-adjuvant FEC and had my scan to see progress. Disappointed to find it hasn’t shrunk at all. After first cycle, I was aware of some soreness around lump but this soon stopped. Oncologist thought at the time that this was positive indicator that chemo was working. Now I’m not so sure - added to which my hair has started growing back. On the one hand I’m quite delighted on the other it’s making me think that the FEC has done nothing since the initial cycle.
anyone experienced anything similar?
next week, I have first cycle of docetaxol, herceptin and perjeta
currently quite despondent 😞
My 3rd cycle of fec and I feel more worn out then the last time. I honestly don’t know how my body is going to cope with Docetaxel next. I hate feeling this exhausted all the time. Being a single mum I worry as I need to do school runs and try and keep things as normal as possible and I really don’t know how I’m supposed to do it. I have a partner but we live in different areas and only see each other on weekends. I just want to stay in bed all the time. Went out for an hour today and I’m now exhausted
Week 7 of Paclitaxel and Cycle 3 of Carboplatin last Friday. Side effects that I have had are minimal considering joint pains day3-5 and this week increase in fatigue and nausea. I am still able to go to my yoga classes, housework and take my boy to cinemas but today I feel like meeeehhh so just on the settee feeling sorry for myself l. So sorry to hear that some of you had a few hospital stints xx
Help if I state who am writing to ...
And to carry on...I've just had my 4th EC and had very few side effects, yep lost some of hair and got so annoyed with finding it all over and being unable to wash/style without losing more had it all shaved off, constipation (sorted via dulcoease) and feel a bit rough the following week (but doesn't stop me cycling or taking it easy at the gym) but no nausea or sickness at all - hope you're equally lucky as me & as you were on paclitaxel.
Good to see you back & hear you're doing well on the paclitaxel, will be joining you in 3 weeks...can't wait!
Didnt stop me from doing anything apart from swimming which i dont do anyway.
i found some pretty picc line covers on ebay which i wore all the time. The tubes all fit nicely inside and are comfortable 👍
you'll probably be given one to use when showering. I just kept my arm up above my head but you soon get used to it.
i had all my chemo and pre meds and saline flushes thro my picc, it was so easy and ' no pain ' ! You have the dressing changed and the lines flushed every week. Xx
I guess I’m worried about the risks and the do’s and dont’s . I have a 9 yr old and 13 yr old that I still need to take care of and being a single parent I’m worried that it will restrict me doing certain things
i had a PICC line , they dont do Portacath's at my hospital, and i didnt have any problems with it. Putting it in was ok, i found the local injections more uncomfortable than the procedure itself.
anything you want to ask go right ahead. I was having my treatment every week and my veins arent good.
mini mad xx 💖💖
A little update from me..
I had Pacitaxel number 9 yesterday and have a further 3 treatments before moving over to the dreaded EC. I have tolerated the pacitaxel really well and had minimum side effects so for those of you moving to this soon a bit of hope... The main side effects I have had are diarrhoea which is manageable and some tiredness. I have been able to do the school run every day except chemo day so a relative state of normality for my children.
Sorry to hear some of you have been on hospital..
Take care everyone.
Sorry bit been on here for a while aa managed to block my account..
Naomi I too had a port fitted and it so much more convenient as I am currently on weekly chemo. It makes life easier...
Did you ask why you couldn't have a port? I know there maybe a waiting list for a port, and depending on where you are in your cehmo treatment time may be of the essence but , if time permits, I would, personally challenge this decision. PICC is still far better than cannula but if you would prefer a port then please do shout!
Chemo is not the time to be all British about this cr4ppy situation, which I discovered early doors (when was admitted to hospital due to thinking I was not feeling "bad" enough/as other people I read about).
Good luck with whatever you get.
Yes but whilst mine was done under local anaesthetic they gave me something else (not general anaesthetic though) that knocked me out for quite a while (probably just to shut me up) but did come round towards end of operation but couldn't feel anything at all.
I was given two lots of anti sickness this time as well as three lots of painkillers(paracetamol, brufen, codeine).
Ive taken a few painkillers and a couple of anti sickness but nausea hasn’t really been a problem so far.
Abdo cramps when I need the loo are probably the worst thing and I’ve had this with all 3 chemo’s.
Happened in Blackpool today and I just had to dash into a hotel, obviously looking desperate for the loo 😳💩!
Just explain and I’m sure you’ll be given enough to help should you need them.
Blackpool was fun, first time for the kids but I’m knackered now. So pleased we just drove from Leeds and didn’t stay over. Back home all cosy in my pj’s with a cuppa tea 😊
Thank you Sam
Everytime I have chemotherapy that vein becomes no good and I’ve cried so much because it really hurts when they are trying to find a good vein. I’ve been told the port it will be done under local anaesthetic but apart from feeling a bit of pressure or a pulling sensation that it won’t hurt.
My decision to go port was a jolly good one. The op is quick (max 1 hr) and was painless, its a little painful afterwards but healed within 2 weeks and is now sooo much easier than fannying around playing hunt the vein and am free of "oh dear another one's collapsed" - as my viens were doing.
Unlike the PICC there's no maintenance and you can swim with it. Mine will be oiked out when I have my surgery.
I'd really recommend it, it is so much quicker as well to take bloods and you'll never need a cannula again (though you may need to go to chemo unit to set it up for any MRI contrast as I found the nurses in the MRI unit weren't trained to do port stuff).
Thank you for replying.
I think the only thing that concerns me more is nausea and vomiting as I have a phobia of being sick. Do you get anti sickness medication before and after treatment.
Have a lovely time in Blackpool, have never been there but my sister says it’s great xx
I'm one week post docetaxil and I am feeling a few side effects but all manageable with a bit of pill popping.
Achey joints started yesterday and a little nausea. I’m hoping this will pass in a few days then I’ll be back to ‘normal’ for the final week before it all starts again!
Off to Blackpool tomorrow as a half term day out for the kids, we were going to go on the train but decided to drive. It’ll be a long day and if I feel dodgy I can always go and flake out in the car for a bit !
A port sounds the right way to go Naomi, it must be bloody stressful for you. Generally , I have ‘good veins’ but I’ve had a few misses. One: it’s painful and Two: you get wacking big bruises.
Had my last lot of fec today soon it will be Docetaxel. Today wasn’t a good day, cannula went in but couldn’t take blood and was no different with the 2nd one and thankfully the 3rd one was successful only I have lots of bruises. It’s been decided a port is the best way to go as I’m running out of good veins.
A little bit anxious about the port being put in but I’m guessing it’s got to be better then this every 3 weeks
How did it go with having Docetaxel?
I hope you are feeling okay.
I have my last fec treatment tomorrow and my oncologist will let me know if I am having Docetaxel or another chemotherapy treatment instead after that.
Hadn't realised you'd been back in hospital, what are you playing at? Have your cancer team not given you the FSG (??) injection things to do yourself? They've been my saviour since hospital visit post round 1.
Glad you're now out but obviously would like you not to end up there each cycle...the poor nursing staff must be getting tired of seeing you (imagine a smiley face here - can't be bothered to fathom out technical challenges!!).
Re the PICC its pants that you found out after the PICC was done that your veins were too small. I went straight to the port on the advice of a lady in my chemo ward who has had both, and am sooooo glad I did.
I don't mind cannulation but playing hunt the collapsed vein was getting exhausting for me and the nurses and I now find that hand & arm are now still aching after last contrast I had with MRI at end Sept.
Obviously I am not you (you should consider yourself v lucky) but the operation was my first ever and was over in a flash, it was an hour max. It took c 2 wks to heal enough to not feel like one of the Borg and is sooo easy to get blood out and chemo in and doesn't hurt any more than the cannulation prick. Plus with a port there's no maintenance (a plus for me as am quite lazy and will do anything to avoid stuff I don't need to do) and your can go swimming too.
Also despite what I was told at the MRI unit (think its cos none of them are trained for port stuff so avoid it) the port can also be used for scan contrast stuff so there is no need for any more nasty cannula Hokey Cokey ever again.
There is an op to whip out the port and if you're yet to have surgery they do it at the same time.
Hope that's helped, you may however find, as I did, there's a waiting list (few weeks for me) so if you're interested I would pursue sooner rather than later.
just checking in and it sounds like a few are going through the mill at the moment ☹️.
Berilperil: can’t believe you’ve been back in hospital. I hope those bloods are improving and you’re feeling an improvement at home. How frustrating, what are you being given to help your neutrophils? here’s hoping the rest of this journey improves xxxx
Naomi: sorry to hear you feel unwell too and are having a delay. I’m having docetaxil tomorrow. Consultant kept telling me not to worry about side effects and to not worry about what the nurses tell me. He thinks I’ll sail through....immediately had me thinking he’s trying to install a positive mental attitude as maybe docetaxil is a rough ride😬. We’ll see !
Louise: I’ve read dark nail polish can protect your nails. I’ve painted my toes navy blue and have shellac on my hands. However one of my big toes is sore and I can see black at the cuticle base. I’ve lost a few toe nails before through running and they grow back ok. I’d rather keep my fingernails though!
I had a consultant appt on Friday and my tumour has shrunk 25% but the cancer is still active so my pathway will not go with a 3rd EC but straight to pertuzumab and trastuzumab. I’ve had them both today and I’m back for docetaxil tomorrow afternoon. I’ll keep you updated on any side effects. Last week I totally felt like my normal self. Food tasted good, I had energy and even managed to run and I even had a night out with a few proseccos!
let’s see what the next few weeks hold 🤞
Im booked in on a FeelGoodLookBetter day 5/11. Hoping I feel well enough xx
Thinking if you all and sending positive vibes 😘
I am on Carboplatin and Docetaxel for triple neg. I too have struggled with neutropenic fevers, and have in both round 2 and 3 required hospital admissions and been given both IV and oral antibiotics each time. I have found the neutropenic infections pretty dispiriting to be entirely honest.
I am now thankfully home from hospital and hoping to enjoy a decent half term with my family. Wishing all a good week. X
Was meant to have my 3rd cycle of fec today but my oncologist has said to delay it until next week as I have a cold and I’ve been given a weeks worth of antibiotics. My oncologist also said that I won’t be having Docetaxel after as they feel it will be too much for me and are now looking into a chemotherapy drug that I would have weekly instead. Also mentioned was a central line for treatment as my veins are playing up, but for now they will see how everything goes next week.
Has anyone else had Docetaxel and how were the side effects? Was anyone else offered an alternative?
Well , I went to hav my picc line fitted on Wednesday to then have my second fec treatment on Thursday to be told that my veins are to small for the picc . I cried , cannulation hurts so much , might now have to have a port fitted which I really am apprehensive about . Recovery at home after being very sick on Wednesday night early Thursday morning after treatment . Also had an infected seroma which had to be drained last weekend and a full course of antibiotics, luckily enough they let me stay at home and not admitted to hospital . On a positive 1/3 of the way through my chemo .
Sorry to hear about your toenails Louise, are you on Docetaxel? Worth a quick call to specialist nurse?
No good news here either. I felt really quite bright on Wednesday after a rough 5 days post chemo. Short lived as now pinged back in hospital for a repeat of what happened in round 2. Naff all neutrophils and a temp. Breathlessness and dry cough have also shown up too. I was hoping to avoid drama with a reduced dose this time. Think I am proving to be a bit of a rubbish chemo patient.
My toenails have started to go black. They are very tender. I have read chemo causes this. Any suggestions please how to stop this. Many thanks
Hi Everyone I hope you are all doing okay (as well as anyone can really)
The antibiotics finally did their job but I felt so rough for a few days.
I managed to get out and about and take a few trips to the cinema with kids and partner and a little visit to McDonald’s on one occasion.
Chemotherapy on the 21st and I have had a sore throat and ear ache on and off for a few days. No temperature though and apart from feeling a lot more tired then normal I feel okay.
Sending hugs to everyone xx
Hi, had another enjoyable chemo experience this week (no reduced portions for me I'm afraid) and am feeling fine afterwards, just the usual tiredness, a bit of lack of appetite and having to set a million alarms to ensure I don't miss any medications!
Lucky you packing up the lap top - I'm still carrying on, and able to do c50% and am glad as need to pay the bills and all this cancer stuff you need - invested in some scalp balm as was getting a bit itchy and scalp was jealous as it is now on show and the rest of the body gets a good lathering of gunk each morning & it wasn't.
Great you've signed up for some stuff, let us know how you get on. I've found them odd, interesting and a good opportunity to meet others and share thoughts, views, fears etc.
Glad you got back the platelets back up so could have your treatments though those ingredients did not sound like they were going to make for a tasty meal but if it works then happy days.
Go for the coat & boots, last you far longer. Apparently my sister has acquired a turquoise wig fresh from a drag queen in Taiwan (she lives out there) which is winging (or should that be wigging...boom, boom) its way here, should be fun...! And I will wear it on the odd occasion just for even more stares.
Interesting topic on cinema, got a day with a girlfriend Sunday and I'd love to go for an autumnal walk somewhere but the weather is looking a little pants (and she is a soft southerner) so may also go for the cinema, have "narrowed" it down to Judy, Joker (yes not letting the darker films put me off) or Gemini...am a bit concerned that I will fall asleep though and waste the vast entry fee that it is nowadays (such a tight northener).
Went for my flu jab earlier and enquired as to whether I would need a pneumonia one - its being looked into, chemo doc recommended flu and pneumonia is good if its one with dead cells (no idea what that means but that's the one to have).
Have a good weekend with minimal side effects
Berilperil, yay to platelet count! Keep eating what you’re eating, it’s doing it’s job. Hope all going well so far x
I like the sound of Sandra , you need to let her out the house. My mother in law is Sandra.... she sounds similar 😂
My wig is Wendy. Wendy doesn’t like the wind and needs restraining at times. My 10 year likes to wear Wendy and styles it with clips, bobbles and hats 😂.
I think I might get another wig.... decisions decisions 🤔
Hope everyone feeling good, great, ok, fab, brill. 😘
My excessive food consumption has paid off! Platelets made it over the line for treatment. Have had dose reduction for both Docetaxel and the Carbo so hoping to avoid neutropenic sepsis drama this round.
Kattz, my NHS wig (not yet seen in public), has been named 'Sandra' she is very blonde and bouffant (not like the website picture), Sandra is channelling 1986, she needs shoulder pads and blue eyeshadow to really rock it!
Bizarrely I have had some hair growth in the latter part of the cycle, I am fluffy grey chick. It stands on end but is soft. Not a great look, but today's outing to get pickled and poisoned will no doubt sort it.
A friend wrote me a letter, she is on the chemo journey and on the subject of hair loss woe reminded me of a line in series 2 of Fleabag (recommended binge watch), where the line is given at full tilt after a salon disaster 'hair is everything' . I am sure many of us facing the cruel twist in the game of this side effect will concur and relate with Fleabag's sentiment.
Anyway, over and out, let's see what delights the next 72 hours will bring. All the best to those on the treatment gig.
worth trying some ice to numb the area. Other sites can be your thigh but check with your unit first.
If it becomes unbearable there are numbing creams .... not sure if they would give you them but worth a try.
Downton has passed me by , maybe I should start the box set from scratch. I do love a period drama and I have time on my hands 🤔
I have a few freebie cinema tickets so I’m totally going for a few solo visits during the day , it’ll have to be the deluxe recliner cinemas though!
I’ve felt bushed again today, had a heart scan this morning and have pretty much been good for nothing all day!
Booked in for a wig trim next week at my hospital. I bought the wig from a private salon, paid a fortune and I can’t stand it! I honestly look like a bloody American big haired politician. Picking the kids up today, I actually thought it was going to blow off in the wind... can you imagine 😂😳
I have also discovered I have a small head!
Nightnight all, will check in soon 😘😘
I too went to the cinema, but in the afternoon. Felt quite naughty to do this on a Monday when normally would be working. Gentle afternoon for me watching Downton abbey in my case, I dropped the age demographic in the cinema by about 20 years!!
I too popped into the local C support centre, and had a lovely reception (with tea and biscuits). Haven't been ready for this until now. Have put laptop away so work now on hold until after christmas. Booked a 'Look Good' session for next month, and going to sign up to the relaxation therapies on offer and join the ladies support group. This group does talks and is a social gathering so sounds good.
Today's activity involves cooking and eating! Yesterdays pre treatment blood check has found my platelets too low. Re -check tomorrow. I don't want a weeks delay, so crossing everything, roast beef, broccoli, nuts and chocolate are on the menu.
Naomi, don't think I have a lack of stomach fat in my concerns list. Plenty to aim for when I inject! Might be worth a chat with the chemo nurse about alternative sites to inject in your case. Hope you feel better soon. Antibiotics should be kicking in and hoping you turn the corner soon.
Will, update if I get my treatment to tomorrow. Sam, chemo twin, are you good to go tomorrow for treatment?
Ps still, no new wig purchase here, getting to the point of should I bother at this half way stage?! Maybe a new coat and boots instead!
Take care all.
I haven’t been feeling that great today and I’m hoping the antibiotics start to make a difference tomorrow x
Has anyone else been struggling with their injections? Normally they don’t hurt but it seems the places I normally do my injections in my stomach has started to lose some of it’s fat and now they hurt .
Any tips would be greatly appreciated
Naomi, how are you today? Hope things are improving .
Thanks for the info Sam, I think I’m ready to start booking in for a few sessions. I’m in Leeds so it’s a huge hospital probably with lots on offer so I’ll start enquiring.
They are waiting for the Maggie Centre to open( anytime now as it was delayed)and they’re meant to be very good. Time to get myself out and about!
I went to the pictures last night to watch Judy. Anyone seen it? It didn’t start until 20:50. I was convinced I’d be snoring before 10 but I got to the end 🙌
Not a very cheery film, in fact downright depressing but watchable all the same.
Don’t think I’ll view The Wizard of Oz in the same light again 😞
The sun is shining in Yorkshire , I hope it is everywhere else too 😘🤞
Thank you. I also got the pharmacist to take a photocopy of the prescription and I have put that in my chemotherapy record book xx
Naomi please ring your unit and let them know what your doctor has prescribed you for the uti. Keep them informed on everything please so if you do end up in there they have your records up to date so will know what to give you if it happens. Please keep safe. 💕💕✨✨Shi xx
Thankfully the receptionist chased it up and now I have a prescription for antibiotics. Too many different doctors taking over from my normal gp and notes not properly read etc.
You asked about other charities & their services.
I also find the MacMillan monthly chemo thread useful for support & sharing stuff with, as with here there's lots of supportive & knowledgable ladies (and some gents) going though directly & indirectly what we are.
Other things am doing/have planned
- look good feel better workshops - through the same charity
- via MacMillan a couple of courses ("relaxation & visualisation" and "facing your world"), they do other ones also.
- via MacMillan 4 lots of massage/reflexology/reiki
- via MacMillan talk on diet from a dietician
Am lucky that macmillan have a office/showroom in the cancer clinic I visit.
Naomi please ring your rapid response and speak to someone, I had a uti on 1st chemo, no temp so thought it was as nothing but rang my unit and I was on antibiotics drip for 6 days, please keep safe and speak to someone ASAP. 💕💕✨✨Shi xx
slight mix up and the nurse wrote down that my urine sample was abnormal and ++protein but didn’t write it down for the doctor and now I have to call back again later. I have left a text message for my chemotherapy nurse as I really don’t want to have to go down the hospital and I really hope that the doctor can write me a prescription today. I have moments where I’m too warm and then too cold but because I’ve always been like that I struggle to know if that’s normal. I don’t have a temperature so I’m guessing it’s normal.
Hi Naomi ,
hope the antibiotics kick in fast. A uti isn’t nice. It might be worth ringing your unit to let them know your gp has prescribed antibiotics , they should be able to reassure you . xxx
Glad you are getting it sorted with antibiotics. During chemo I was on the phone to the unit about anything, rather get everything checked so it’s ok so they can do their job of getting you through safely. It’s a rollercoaster you just keep hold and ride out the ups and downs, use the someone like me facility on here or speak to your Macmillan unit, there are things you can go on that could help you manage the ups and downs also the ask the nurse on here too they have more knowledge on how to help you. 💕💕✨✨Shi xx
My gp is going to do me a prescription for antibiotics x I still feel so clueless as to what to look out for but because of previous kidney problems and urine infections I notice the symptoms pretty quickly. I’m having a day where I feel so fed up and emotional