Hi fellow May starters
Have hit the neutropenia wall today. Felt dreadful all day and temp up to 37.7 with a very fast heart rate. Phoned the helpline and was told to come in for checks. Overnight stay for me and fingers crossed that neutrophils improve tomorrow. It’s really frustrating as I’ve been injecting since Saturday and had hoped to avoid another admission Bloody docetaxel!
Jacq x
Thanks Paloma for the encouragement it’s good to know it all starts comming back. All of my treatment including rads finishes in October hoping to look and feel more normal by Christmas x and hopefully lose these few more pounds Ive gained (thank you steroids)
Hi Ladies … its been a while but I have been feeling so miserable I haven’t wanted to post! The effects of docetaxel have caused such diarrhoea that I have spent day in hospital last time. After the third round they have reduced the dose which has helped but the nausea has gone on much longer. I guess like all be glad when the heat has gone. I am trying to drink but can’t find anything that I want to drink as it all tastes like chalk ?..Finding each cycle ( mine stay the same for all six hecp/perjeta/docetaxal/carboplatin) takes a day longer to get over but I guess that is the compound effect . My op is after the chemo so want to get finished asap so on to next bit . Anyway just wanted to say all your words and stories have kept me going . Its very easy to feel very alone out here xx
Hello ladies. Lots of posts and lots of dreadful things we’re coping with. I have dreadful aches in my pelvis when I’m lying down (seems fine when I’m up and about although I’m not exactly running a marathon!).
@jemPD ulcers sound awful! I haven’t had them but my friend did and swore by sucking lollies I will try to find out more details.
@jacqB are you still in hospital? I hope they have managed to find out what has made your temperature spike. In my experience they like to put you on 48 hours IV AB and then monitor you for another 24 hours when they switch you to oral. Sending you lots of positive thoughts!!!
@joandvasilthedog are you still in hospital? Chemo is tough. Not sure if it helps but I spent time in hospital when I felt well enough talking to other patients (cancer and Jon cancer), it helped my mood because often there were others who were struggling more than me.
Seeing Onc tonight, will see if he wants to change my plan ?
Hi all,
Just been catching up with your exploits…sorry some of our mad group aren’t doing so well. Hope you’re feeling better today. I’m going through the down days of fatigue and a sore throat today…and indigestion, a new one for me. Where’s the gaviscon?
A couple of days ago I was happy to be through FEC…now I feel quite low and dreading T even more…and it’s still two weeks away. Think it’s time to focus on the present and try to enjoy the better days coming up this cycle.
Enjoying the cooler days but still not sleeping…how irritating is that!
Thanks for the humour everyone…you’re keeping me going xx
Came home from work today as went to the loo 3 times today and so went to bed when got home. Had bad lower back pain Tuesday night but that was fine last night. Took paracetomol all day just in case. Got a very dry mouth. Someone at work is going to the doctors tomorrow as thinks hes got sinusitus. It can be an infection and he sits near me now but the oncologist said the only way to avoid infections is to stay at home and isolate yourself which isnt practical. Any thoughts anyone? Still got a rash on my hands which the nurse who flushes my picc said just to keep it moisturised. Will know the day before cycle 6 if having a 7th. Getting fed up now and cant wait til last one. Felt sorry for myself Sunday and Tuesday. Still not sleeping for long. Running out of Diflam mouthwash but i think you can get it from the chemist. Will check online. Soz to hear you are in hospital Jacqb again. xx
Linda Corrine, ask your onc for 2 x difflam in your meds goody bag, I used to go in with list of stuff, 2 x difflam, box fluconzole, antisickness meds, wok, cuddly toy and a partridge in a pear tree, ask for things otherwise they assume all ok and you don’t want it. Failing that speak to pharmacist in boots and they’ll be able to help. I went on full lockdown during Chemo, to be fair it was winter and the news was banging in about worst flu season ??? could you work from home? Your company should be supportive with minimising any risks. Joan and the bulldog, have you tried the fever tree range of drinks, I know a few ladies have found those pleasant tasting ? get that black fingernail polish on nails for the t ladies, helps preserve your nails by protecting them from uv light. I sound nuts, but I did keep my fingernails and so did mai7 who was proper trooper who did 8 chemos??
hi xx
I have got difflam from the docs. I forgot to ask and thought i would last til monday as going in then anyway. I have asked to work from home and HR referred it to my manager nearly 6 weeks ago.
Linda, they have a duty of care that they should adhere too, phone the Bccf helpline to get some guidance on this darling, you should not be putting yourself at risk of any infections during Chemo. ???shi xx
Hi all well first T yesterday and despite being up at stupid o clock again I’m so far doing ok, but guess that’s due to the 8 steroids a day for 3 days. This time I had to start the day before T, Im also having to inject today. Tropic all x I suffer with indigestion and been prescribed lansoprazol which I take daily it has stopped it completely and I also have gelcare oral rince gel for ulcers and sore mouth which they say is very good it coats you mouth and stops infection. As well as mouthwash x must say a big thank you to all the nurses at Velindre they are fantastic and so friendly and reasuring, and a big shout out to Rhys today for finding my vein first time my hero for the day 
hope everyone is doing ok andooking after yourselves and keeping ?? xxxx
Hi Tanya!
Hope you’re still feeling okay.
I’m a few days ahead of you on the dreaded T, docetaxol.
Just be prepared for the crash on day 3, after the steroids stop.
So different to FEC, after having next to no symptoms for the first two days after, except steroid induced lack of sleep, I woke up on day three with bone pain, mouth ulcers, a burning throat and have now, on day 5, developed a particularly grimy looking furry yellow tongue!
I’ve resorted to paracetemol every 6 hours or so, worse at night, and hoping it passes after a week or so.
I also have a bruised feeling in my thumbs, which makes peeling celotape difficult.
Sarah xx
Hi Ladies,
Just reading the side effects of the dreaded T as I will be having my first next week. Linda, Sarah and JemPD, hope the mouth issues can be resolved easily with medication. Tanya, I also attend Velindre and Rhys was my nurse for the last FEC and he was great. Tanya when is your LGFB session booked? Mine is 5 days after first T so I hope i will feel up to going as I am looking forward to it.
Hope the diarrhoea has settled and you are feeling better Joandbasilthedog,
Hets - has the pelvic pain resolved?
Everyone is doing so well despite the nasty side effects we have to endure and sharing how we cope with it all is so reassuring so thank you ladies and please keep posting, we will reach our exotic destination in the sun ??
Glad to be home after another admission for neutropenia. The antibiotics add new side effects on top of the chemo and injections. It really is miserable. Dreading chemo number four ?
@mustardandgrey thanks for the advice I’ll be waiting in anticipation lol x I have just given myself the injection and it was so easy it’s for an extra boost did u have this too if not will keep you informed. @ Tracy Mac I have lgfb on the 24th of this month @ 10.30 maybe see you there if it’s the same day x I’m still feeling ok and have been out for a walk around caerphilly and picnic in the park with my mam hope everyone is ok @jacqb glad your home safe rest up and take care x
Jacob, glad you are home ?now please keep ???and there will be no wing walkers by for number 4 for you as captain costas needs you to hand round the ferro Roche please on the plane this time, think he’s trying to boost duty free sales as he knows planes nearing Greece and club Tropicana ever day ???You are all doing ???and the duty free trolly with makeup is on its way looking at all the Lgfb sessions you’ve coming up ???Shi xx
@jacob well done for getting home. It’s so tough being in hospital on top of everything else. Sounds like T is tough, feels like I dodged the bullet not needing it, thinking of you all going through it and sending strength and love. Been decided I will go ahead with chemo on Thursday but without the G-CSF injection because they think now that could be giving me the fever. I will just have to be extra diligent on staying away from bugs. In meantime making the most of the week off chemo. @shi my pelvis does still ache when I’m lying/sitting down but it’s not so bad that I’m too worried atm ???
Oh is this the Welsh thread?!? I’m also at Velindre! I’m having my last Chemo (T) on Friday 20th. I’m on the April thread. I’ve had Rhys, Ruth and Stan and they have all been great. I haven’t done the LGFB course I keep telling myself to book on but haven’t got around to it. Have you all had surgery? I’m having it after chemo at the Royal Glam.
I hope your chemo continues well and is uneventful x
I attend Velindre too Michelle21, Stan was my first nurse and he made me feel relaxed and pit me at ease. I have my first T this Thursdsy.
Tanya in an booked for LGFB the same day and time as you so I am jist hoping I will feel well enough to attend after the first T .
Look forward to seeing
@tracey look forward to meeting u there hope T goes ok x Im now day 4 of T and woke up as if I had been thrown against a wall . No energy what so ever and have spent most of the day on and off sleeping, paracetamol keeping pain away in my joints. No ulcers as of yet just a general run down feeling hope it passes soon . But on a positive only two to go and this is making me better
@Tanya…hope you feel better soon.
It does pass quite quickly, although that’s no comfort at the time.
For me it passed on day 7, yesterday.
But by far the worse days for me were days 5 and 6.
I cried with the sheer pain and lack of sleep on Saturday night, was an emotional wreck all day Sunday, but then Monday rolled around and I woke up feeling quite human again, except for the mouth ulcers. Those have been excruciating this time around, and my tongue turned yellow and furty overnight.
But the flucozole steroids are doing their job on those.
Sarah xx