Thank you for that, it’s been a bit of a tough day 5 post chemo today.
Sore joints, hair shedding inc pubes, feeling so tired and wiped out. Managed a walk round the block Younger DD took one look at me after I got back and went out and bought some Scully soups. She does not think l can face her cooking on her chefs day off and today she is not wrong.
Nausea has given way to dynorod and l do not want to eat…but am in between eating loperamide tablets and drinking flavoured water as everything tastes wrong. Days 5 to 7 really suck.
Sorry I haven’t been on to check in - I’ve had an emotional several days since last EC. Somehow it’s just hit me this time round, feeling so nauseous, fatigued, losing hair etc and being so very different to the usual me - so I’ve found this cycle hard. I’m on day 7 now so coming out the other side. Tried to do things when I can but it’s been a hard one. I think this is totally normal though and I’m being kind to myself about just feeling what I feel without judgement. Anyway, sorry for the absence when others have also been going through their own troubles. I hope everyone is as ok as possible in this tumultuous journey
Sorry you’ve had a rough few days, which number EC are you on? i was very emotional for a couple of days on my 2nd EC and just felt like I had a grey cloud over me it was horrible!! But it did lift, sending you lots of love xxxxx
Thank you! We’re still not 100% sure if they are chicken pox or not and the GP couldn’t say for certain either. Spoke to the hotline again who asked the oncal doctor, they said going off my bloods from today, my medical history and the fact I’ve had my pox immunisations and already had them they think I’ll be fine to go ahead. I have my pre chemo review anyway at 9am with my oncologist so they said just run it by her and she will give me confirmation either way! So fingers crossed I can go ahead with it and I’m at the peak of the mountain then halfway through!!! Xxx
Day 6 definitely had me on the sofa today although I have done chores inbetween so I’m still getting in some movement in. I should have gone for a walk though. Looking forward to day 8
You’ve been doing something and it all counts . It’s hard to listen to our bodies when we can be so used to ignoring them and pushing though without any real impact. That isn’t what happens in chemo so I guess we are having to relearn ! Roll on day 8 for you x
PICC line flush done. Nearly fainted again blood pressure went down to 58 over something. She’s made a note and will add to my notes.
I told the nurse about my allergic reaction and got a gentle telling off. She said the wheezing and breathlessness would be a medical emergency and I should have called the emergency number. She said to mention at my next review but if it occurs before then I must call straightaway. She said that it sounds like the reactions are getting worse each time so the oncologist might be able to prescribe something longer lasting in terms of steroids or antihistamines. I just hate the idea of sitting in a&e in for hours in the middle of the night, which I know is daft but necessary in equal measure.
My hair loss is also getting worse. I’m not quite sporting a monk hair style but this 2nd lot of shedding is taking a toll. I have a hair topper but there’s not a lot for it to clip onto. Think I need to make a decision about going a lot shorter I know lots of people feel better once doing it, it just feels such a lot.
Hi foxgem i have scrolled through some of the latest posts in the hope that this joins the thread? . I have been doing ok on EC luckily but Not quite sure why I had a bad experience on third cycle, was very sick which is odd because i havent been before but the taste of the infusion got me this time . Just glad to be feeling better now . Its good to be able to connect with others going through this
Hey @cazgib10 glad you figured how to post here I’ve just had round 3 of EC today after panicking it wasn’t going to go ahead as my lovely 5 year old daughter had suspected chicken pox, after lots of calls and a pre chemo review with my oncologist this morning they decided it was still safe to go ahead so I’ve now reached the halfway mark
What do you move on to next chemo wise? Hope you’re OK I’ve heard lots of people say it’s cumulative and each session felt a little worse. So far my 1st was the worst and 2nd felt slightly better and only needed a couple of anti sickness tablets on the 2nd round, I was popping them like you wouldn’t beleive on round 1
Thanks its been a little challenging hopefully im figuring it out ok now. I have 4ec and 4 pac to do . I have currently completed 3rd ec so halfway will be no 4 . It hasnt been too bad so far , except for a slight set back on fridays infusion where i felt quite unwell but they are hopefully going to up the sickness meds this time . Sorry to hear about ur Daughter having chicken pox hope she is doing ok ? and Glad it went ahead for u .
Please have a good talk with your oncologist. mine told me I did have some choices and there were other chemo drugs she could use. I tried for the third time with everything extra they could give and still had an adverse reaction. Mine then took on the hospital ethics board to get me a chemo drug I did not react adversely to even though they did not like the cost. Okay so I still get a. delayed reaction hence extra steroids and daily antihistamines for me but there could be options with steroid tablets and various stronger antihistamines that your oncologist knows of.
IF your hair is still shedding might be worth considering going shorter. MIne is buzz cut and it’s still falling out. I choose to cut it very short as I decided for me it would be less upsetting seeing hunks of very short hair rather than longer hair. DO what makes your head feel comfortable. It is a hard space to be in but it might give you a sense of some control of what’s happening.
Thankyou for welcoming me , apolagies not sure how to tag people in my reply yet? its been so hard from the start of this journey as i am a bit isolated from friends and dont have much family . They live out of the area and as i dont drive and would rely on public transport to get around . I have a partner who has been great and a 13 yr old son . Whom i love dearly but i do get so worried about how he is going to cope with my recent diagnosis . I just hope i will get through this treatment ok so he doesnt see me suffer too much bless him .
@katie91 good news you could go ahead! My eldest had what we thought was chicken pox and I don’t think we ever got to the bottom of whether it was that or HFM! I think the former though.
I’m also halfway through now and (hopefully) done with EC! Had #4 yesterday and had a hideous night feeling very unwell but much better today (and feeling mentally better than I did after EC#3.
@cazgib10 i really noticed the chemical taste after EC#3! Rocks orange squash in the glass bottle has really helped this time.
Paclitaxel for me next - could anyone give me / remind me of tips?
I’ve got 20% of my hair left and it’s still shedding so all very depressing despite my cold capping. But on we go.
Il try orange squash next time , i have some hair left as have been cold capping i understand completley i just cant bring myself to cut it yet until it becomes a lot more noticible as its easier to cold cap with hair i think it doesnt seem to affect the cold as much but no idea what it will be like in the next round of Ec, seems a shame to lose after keeping it a while.
@jululemon paclitaxel is much better tolerated than lots of other chemo drugs so you’re definitely less likely to get nausea, sickness etc. However 20% of people get an allergic reaction to it and so the nurses will sit with you on your first two infusions for a certain amount of time to make sure you don’t react. A few of us have experienced skin reactions afterwards which is worth keeping an out for. Antihistamines are helpful. Hair loss does occur but mine never all fell out, more thinning and now some patchy tufty re growth . It’s quite quick to go in so you’ll probably be there for a shorter length of time.
. I hope you’ve got a clearer idea now xxxx.
blood pressure went down to 58 over something. She’s made a note and will add to my notes.
I know lots of people feel better once doing it, it just feels such a lot.
I’ve just had round 3 of EC today after panicking it wasn’t going to go ahead as my lovely 5 year old daughter had suspected chicken pox, after lots of calls and a pre chemo review with my oncologist this morning they decided it was still safe to go ahead so I’ve now reached the halfway mark 
welcome
. It’s quite quick to go in so you’ll probably be there for a shorter length of time.