If you still have that it might be worth checking if it’s the HSV 1 virus (herpes) which can flare up from chemo. Most of the population carry the virus so nothing to be embarrassed about and a course of anti vitals will get rid of it x
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I found day 6 (EC 1st cycle) the worst. I think that the filgrastim made me rough too.
I’ve diarised each day the side effects and what I’ve done for them so that cycle 2 I’m a bit prepared.
Now day 13 and normal ISH, but tired. Batch cooking, changing beds etc ready for next week’s cycle
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Morning
Has anyone had a red rash as part of side effects. Woke up this morning and it’s right across my cheeks and neck and both breasts.
Skin feels hot but my temperature is normal.
111 have advised it’s likely a side effect of the EC and have advised me to go to oncoloy unit when it opens to get checked.
Just wondered if anyone has had similar. @Ross24 did yours start as just a red rash?
Xx
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I’m have EC. I had a red rash across my neck/chest during the infusion, but it resolved quickly when they paused and gave me IV piriton.
Nothing since.
Will your unit accept a photo of it if you send them one, might just be a way of not necessarily having to go in. Just a thought
Good luck xx
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Hi lovely ones
I’m advised that yesterday was a steroid crash and that 5 in 100 react badly to them. That was horrendous. Feeling vaguely human again today.
@kitty77 I hope they get that sorted for you quickly. @Vibby I am also diarising the side effects so I can be more prepared. Honestly, I think I would rather be sick than feel so utterly bleak again. I cried all day yesterday and kept staring into space.
Does anyone else have this constant fluctuating temperature?
One thing I do know is that I need to invest in a decent thermometer as mine keeps telling me I have hypothermia even when I am burning up!!
Salbert
x
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Thanks ladies
I’ve been into the unit and they checked all my vitals which are normal so have given me piriton tablets to take.
Just got to monitor the rash and call them if it gets any worse - typically it seems to be fading now!!
They said it could be a delayed reaction to the EC which is unusual or could be a flush as a result of coming off the steroids??
I have the joy of filgastrim injections starting today too, planning on doing them on an evening so if I get the aches and pains I might be able to sleep through a bit of them??? Really hoping they’re not too bad!
I’m also keeping a log of symptoms, side effects, emotions and tablets taken - it’s like a full time role at the minute 
.
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Mine started as red itchy rash - on chest - where clear plaster had been after my port insertion … I wondered if I’d become allergic to latex (hadn’t previously been), and apparently it’s a thing … u can become allergic where u hadn’t previously been.
Unfortunately mine spread up my neck and i developed shingles over that rash (it became very very itchy, and vesicles appeared a few days after 1st infusion). Been on aciclovir for the last week, and it’s clearing.
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I know !!! Feel like having cancer is my job !!!
I’m day 13 and the side effects are definitely lessening. Finger tips are more normal and bowels less frequent !!!
Not much energy but manageable with frequent rests.
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Hi @salbert do you have a steroid card? I would enquiry and also check how /when you can stop the steroids as there could be a risk of adrenaline failure that’s why we have to drop the steroids progressively (which they didnt tell me at the beginning!!)
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Hiya @prairiedog if you’re doing the cold cap, you will be shading even with a lot of hair, that was my case.
But you’ll have hair in all the right places. If you’re not cold capping, I would imagine you might loose them pretty soon… It’s never too late to cold cap and it helps regrowth. Tea trea oil is good for scalp 
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@kitty77 @salbert it is a full time job so don’t worry if it feels like that! Make sure to record and monitor your temp and get a descent thermometer. Really cheap in pharmacy.
Filgastrim injection - there is no rule! Everyone react differently. I find that keeping warm, hot bath, regular paracetamol)and if you’re allowed, please check, loratidine ) may help.
EC delayed side effects is not unusual! Especially the further you go into the treatment. Reaction usually happens on the day but rash, and anything else might happen over the next few days. Write anything unusual in your book like you’re already doing 
and let nurse know if your temp spike
@Vibby mine accepted photo and id have to come in to pick up meds anyway if meds needed. If you have another rash, ask if they can give you IV periton before if they’re not already doing it!
Keep going ladies, you’re doing amazing and you’re stronger than you think 
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I’m like waiting on my hair falling out 
but nothing has happened at all !!!
Any thoughts on when it most likely to happen ??
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@pinklilli3s I haven’t done cold cap, no 
I’ve kept losing hair and decided to cut it short because I was leaving hairs all over the place and I found it a bit icky. You still can’t really tell I’ve lost hair except around the forehead area. I do, however, expect to lose most of it at this pace, but I’ve got my wigs from my first chemo so I’m prepared for it! 
Duly noted on the tea tree oil by the way, thank you!
I also wanted to ask if anyone had tips on keeping the blood cell count up since two of my chemo sessions have been delayed and it’s quite frustrating since I’ve just started and I feel absolutely fine. I’m eating a healthy, balanced diet and stay active. Nurses said it’s out of my control and not to worry about it, but… 
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It is out of your control indeed. Do you get the filgastrim or gcsf injection (same thing) ?
That’s probably one of the most known way. Over time it might decline because of accumulation of chemo drugs in body , that’s why they ask you to keep an eye on temperature to avoid anything else more serious like neutropenia.
Check w your oncologist and nurse and if you already get the injection, do flag it to them. They could reduce the dose for a while or give a bit more time to get back in your feet but discuss that with them
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Am really impressed with people who are still at work!! Please take it easy though and make sure you rest xxx
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You’ve had a rash haven’t you, you got plenty to worry about 
can you cold cap? It helps regrowth. It worked for me and I didn’t believe in it. Now thyroid is unstable but that’s another matter and my hair is thinning but, you couldn’t have said I was going through chemo
The hair loss is gradual. Have you done the course : Look Good Feel Better.
Big big hugs 
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I started my first of 3 ECs on Tuesday, I am trying g to drink and can manage some toast ,that’s -bout it right now. I’m going to get some grapes to munch in frozen and have a few Ice lollies to try.
I’m already underweight and conscious of losing more. I’m trying though.
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I’m on day 8 of round 2 of EC and I work from home. Round 1 I was super hydrated and went out for at least 1 walk a day. My infusion days are Thursdays so my week is planned to gradually start working from Tuesday. With the 2nd week being an almost normal work week but my work is not constant.
Round 2 my taste buds have been affected a little and I have signs of neuropathy. Wearing compression gloves and socks has made an immediate difference and I’ll ensure the gloves are on during infusion (socks have been)
I haven’t been as hydrated with round 2 -I think I’m still a lot more hydrated than most as I usually drink 2-3 litres pre chemo but I also haven’t been out as much with my walks largely because we’ve been having all the weather.
I write this because whilst I know there’s a cumulative effect with the drugs over time, seeing 1 friend a day, lots of hydration, at least 1 walk, delaying/phasing work and focusing on my self-care impacts how I feel mentally.
Even just having all the windows open whilst lying on the bed to get fresh air helps. Moisturing my skin, nails, hair, eating fresh berries, long baths-it makes me feel nourished and taken care of when I focus on mothering myself through this and it makes me feel less tired when I move or stretch.
Keeping a record of side-effects is helpful to help you plan ahead for the next cycle too and I have a weekly date with my therapist.
I find it helpful having that structure in place even if my mood is fine - routine gives me bursts of energy - I drive to her so it gets me out and moving.
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Hi
I started chemo last Friday and haven’t felt too bad apart from awful wind! I even managed to ride my horse Tues and Weds. I’ve had a couple of small migraines.
I know the treatment is cumulative but I’m just taking it a day at a time and keeping as active as I can xx
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Hi everyone
I feel normal again today! So this is 1 week after round 1 of EC. This is going to be one hell of a journey, I can tell. Great to compare all our side effects and ways of coping. I am loving that we are walking this walk together, much as it’s the crappest walk I’ve ever been on!
@diamonddapple - Wind. Tick! 
Did apologise to my husband and point out that he had been doing it for years.
@Vibby I also feel like I am gingerly brushing my hair every morning and just waiting for it to start shedding. It’s quite scary but today I spoke to a lovely wig lady so that I feel I will have some control. Not much, but a bit. I wish I was brave and could just shave it off but I’m just not. I’ve always hidden behind my hair. I’m hoping this will help me grow spiritually and come to the realisation that looks are superficial. In all probability I will wail and fret and do my usual emotional meltdown before accepting it.
@pinklilli3s I have ordered a decent thermometer as mine routinely came back with a hypothermia reading even when I was burning up. That’ll teach me to try and save money. 
I don’t have a steroid card. I will enquire about that. My oncologist is going to look at this bad reaction at my next appointment which is a week today. Thanks for your encouraging words and for sharing your knowledge. It is appreciated.
Please all forgive me in advance for when and if I lose the plot and am on here venting. I am a very emotional person and am rather a slave to it. It’s the bit that scares me the most, if I’m honest.
Big love to you all,
Salbert
xx
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