@hopefulheart also having EC but haven’t had any neuropathy, hope it’s gets better soon. I also had to miss Take That in Birmingham a few weeks ago, so on the day of the concert, put up my life size cardboard cut out of Gary Barlow, and watched the Odyssey tour on DVD😂
@shahz4169 sorry to hear your shedding so much, I know it’s quite traumatic.
I’ve had one EC and cold capped, started shedding on day 14, it then got so bad on bank holiday Monday (day 20)I got my husband to shave it off , but as much as I wanted to keep my hair I feel so much better now, no more worrying how much more is going to come each day. Have got a wig which looks pretty good and lots of hats… it’s only a temporary blip and I know it’s gonna grow back😊
Will also post some before, after and with wig photos
Just coming to the end of my first TC. Didn’t sleep well last night, damn those steroids! The cold cap was cold to start with so I thought I was doing great then they found the coolant was leaking from the machine onto the floor. Always causing trouble and a flood! They then had to start again and the hat was super cold so clearly not working to start with. I’ve had a headache most of the day and felt woozy and a bit icky but fine apart from that.
My chair neighbour who was also cold capping didn’t even need a blanket yet I was freezing.
Will see what comes in the coming days.
I think you can continue to cold cap with a surgical hat to protect that scalp if you lose hair.
Hey everyone, it’s good to hear how everyone is doing, even if we’re not all doing good! Having just gone through the wringer myself I hope you all start to feel better soon So after me saying no nausea after my first round of EC later that night I woke up and was ill and had severe abdominal cramping, so a late night visit to hospital then continued to feel nauseous to the point I wasn’t drinking so ended back in hospital for 3 days. I also felt really lightheaded and almost spaced out for a week, I was barely communicating with my family! I was absolutely terrified at the thought of having to do it all again in a week as I was on a 2 week cycle, but at my meeting this week they gave me a weeks reprieve, I was so relieved I burst into tears when she told me! I’ve also been referred to get a PICC line as they struggled to even get fluids into my veins at the hospital. @snoop182 I also had a single mastectomy in April and scar is somewhat mis-shapen after seroma, but nurses said I could get corrective surgery after my radio if I wish. Only thing I would say is keep doing those exercises as I stopped when I didn’t feel great and the whole area tightened up on me again. @rosa1 I haven’t cold capped, but still hanging on to my hair for now, but I did a zoom LGFB course on headwear, wigs and brows which was really good and delivered by Cancer Hair Care who have an excellent website with loads of information on all things cancer related from cold capping to headwear recommendations. Give it a Google, I ordered from some of the websites she recommended.
@kiltie sounds like you had an horrendous experience, I’m glad you’re feeling better now. I must admit I find it so difficult to drink when I feel nauseous but I can suck on ice cubes which helps keeps the fluids in, not much but better than nothing. Take care and enjoy your weeks reprieve x
@rosa1 I’ve noticed the hair shedding has started to slow down in the last 2 days, I’m day 9 post 2nd EC, it started around day 18 after 1st one. It does look like there’s a dead animal in my bedroom bin though
I have some wigs incase, 2 from Shein as I’d seen them recommended, very cheap, they don’t fit me well but are ok quality, and a decentish one from Amazon that was only £30 and I’ve decided will do the job if needed. I’m also ordering some rosemary oil shampoo and have been told to focus on moisturising my scalp rather than cleaning my hair when I wash it.
I may be repeating myself from earlier there but hope that gives you an idea x
That’s a good tip about ice cubes @tori123 i will give it a try next time as want to avoid a return to hospital. Oncology team reassured me the onus is on them to make sure I don’t have the same experience so they might tweak my dose or meds for round 2. I hope speaking to your oncologist helps resolve things for you going forward
And again after saying on here no hair loss, my hair then had other ideas I clearly need to stop saying things on here!
Finally, just wanted to mention that cancer hair care said they are re-starting their wig bank, where they can send out free wigs to people.
Hi all, 3 days post chemo. Felt very nauseous on thurs morning, but felt better by the afternoon. Friday I felt extremely tired and didn’t want to get off the sofa and today I felt like I’ve drunk 10 pints and done shots afterwards. Also achy due to the filgrastim i think. Oh, and the constipation is a joy! Hard to rest when you have two bouncy kids around. Hoping I’ll turn the corner tomorrow or Monday. @kiltie thanks for the tip re exercises, I haven’t felt like doing them but have managed to fit in two sets a day. I’d got to such a good point, I do not want to go backwards. Will try to get back to three times tomorrow. Sorry you had a bad time but good you have a break before next lot. Take care all x
I have my 3rd cycle due on 27th June which is my daughter’s birthday. Mine is a 3 weekly cycle and wondered whether having it on the Monday which will be 4 days later make much of a difference. She turns 3 so worse case we could do something the weekend before if the oncologist think it’s too much of a wait. Does everyone have any experience of this chemo being delayed out of choice rather than medically why.
Hi @rosa1 I’m sure they must get asked this loads and as they often delay a week for medical reasons it must be okay to do so definitely worth asking. If they say no I’m sure your little one won’t mind celebrating early (or even notice its early!) if she’s anything like my 3 year old being center of attention is the main thing
Morning, has anyone had a runny nose as a side effect? My nose constantly feels like it’s running and having to carry a tissue with me everywhere, also have blood when I blow?
Also anyone who doesn’t have a pic line do you have very red patch along the vein where the cannula went in and drugs were administered?
Morning, the runny nose could be because you’ve lost your nose hair, mine is getting more runny by the day. I’ve had blood when I blow once but not regularly.
No red patch but I did have severe bruising. Definitely worth a phone call to the chemo nurses I don’t think we can be too careful with things at the moment.
@snoop182 The runny nose is very normal, I started chemo in Feb and pretty much every time I lean forward it’s like a tap of snot has opened… Blood is also normal and my oncologist said they wouldn’t refer me to ENT doc unless I got a bloody nose that wouldn’t stop for more than 20 minutes and it happened regularly. Get a tub of vaseline and use it liberally up your nose to keep it from cracking and bleeding.
Hi all, first post here. I started EC a week ago and my head feels like I’m in a constant fog - it’s heavy and headachy all the time. Plus I have a dull constant sense of nausea that only goes when I eat. Is that normal? Feel like a shell of myself and don’t know what’s normal or not :-([quote=“Alice_BCN, post:1, topic:119143, full:true”]
This topic is for anyone starting chemo in May 2024 to share thoughts and feelings in a supportive environment.
@nicole3 I had a headache too and nausea which did ease off. The nausea was worse on the day and evening and and a few days after. Then it would just coke and go. Eating definitely helped. Even if it was just a snack. I have my second one tomorrow.
Snoop182 just check with your team about the red line a runny nose is quite common but also worth the question when you ring your team I used rapid response like the bat phone they drummed it into us at my trust to ring them about anything during chemo it’s what they want you to do so you help them get you safely through Shi xx
Hi, this sounds very familiar I’m afraid. Try to keep your fluids up and, if you’re not already, keep checking your temperature. You will hopefully find it eases soon xxx
Hi everyone,
I’ve migrated over from the April starters group, I did ‘technically’ start my chemotherapy at the end of April but I had a bad reaction to the chemo 4 minutes in so I restarted with something new in May. So I’m day 2 of…cycle 2 (they didn’t count the first one for obvious reasons) I had my second nab-paclitaxel/carboplatin yesterday and I’m also on the immunotherapy Phesgo. Hopefully I will fit a little more in this group. I felt so behind in the April group as I didn’t start right until the end so I’m hoping to find some connections here as I felt like the lovely ladies there were miles ahead of me and were heading into cycles 3/4 and I was just at the beginning. They were all super lovely though. I’ve found this forum to be so so helpful!
I can see I’m not the only one with a runny nose!! It’s so bizarre isn’t it. I hope that everyone is doing ok. I’ve been utilising the steroid buzz today and cleaned the house so that I can rest quietly and catch up with rubbish telly a bit before my two get home from school/childminder.
then continued to feel nauseous to the point I wasn’t drinking so ended back in hospital for 3 days. I also felt really lightheaded and almost spaced out for a week, I was barely communicating with my family! I was absolutely terrified at the thought of having to do it all again in a week as I was on a 2 week cycle, but at my meeting this week they gave me a weeks reprieve, I was so relieved I burst into tears when she told me! I’ve also been referred to get a PICC line as they struggled to even get fluids into my veins at the hospital.
I clearly need to stop saying things on here! 
as I felt like the lovely ladies there were miles ahead of me and were heading into cycles 3/4 and I was just at the beginning. They were all super lovely though. I’ve found this forum to be so so helpful!