@glitteryrainbow sorry you had to miss your friend’s wedding, it’s upsetting when our treatment plan stops us doing things that really mean a lot to us. A cross-stitch sounds like a lovely way to commemorate their special day, I’m sure it will be something they will treasure. I wish I was more creative!
I’m moving on to 9 weekly sessions of Paclitaxel (with ongoing 3-weekly herceptin) on 11 July, so I was interested (and hopeful!) to hear you say that the side effects you experienced were less than on EC. My blood pressure has been consistently low too, since I started EC on 9 May, but that seems to be just how my body is responding to the drugs. We should finish chemo around the same time - it feels like a long way away, but it’s already July tomorrow!
My oncology reviews are now over the telephone rather than face to face, so at least that’s one less appointment each week!
@rosa1 hope the laxido has started to do it’s thing and that you get some time to rest and take it easy today. I’ve been for a really good walk with my two dogs but now I need a sofa snooze! xx
Its a pain that it takes so much from us but I try and look to the future and think about things I will be able book after treatment (like a lovely holiday)!
Side effects are definitely easier, I think most of the side effects I’m feeling are due to the steroids (nausea, hurt burn). Just been feeling slightly tired today but think thats due to not sleeping very well as I’m experiencing horrible hot flushes all through the night which wake me up. But definitely feeling much better than what I did on EC so thankful for that . We’ve got this! Like you said, time will go quickly I am sure.
@hopefulheart yes the laxido has now started to work. My stomach is less crampy and I’ve gone to the toilet. Let me know how you get on with paclitaxel just so I know what may happen.
Sorry I’ve been a bit absent. Had a busy time with school things for the kids, plays, sports days, school trips, scout camp etc. Nothing that I actually attended but apparently as mum I need to get everything ready for them, my husband or other family members and everyone is incapable of finding anything unless it’s right in front of them . Anyway… Rant over!
Sorry to hear about the hospital trip @tori123 , are you ok now?
@glitteryrainbow crossstitch sounds lovely, I’ve been enjoying some time at my sewing machine but after a busy week last week I’m forcing myself to rest a bit this week ahead of my 3rd cycle next week tiredness feels more this time round. I stumbled crossing the car park at the shops after I’d done too much in the morning and my mum in her mood 70s felt the need to grip my arm like a invalid so I need to listen my body more. So some embroidery is on the cards instead.
@rosa1 I felt the same re the not pooping situation, lactose to the rescue. Glad there is now some relief. Re your early comment - my bald patches were developing around last cycle, due to a large shed the day before, they combed my long fringe over it to protect it. The nurse and I had a chat about what to do next time hence the suggestion of wet gauze. My hair loss has continued and I have bald patch on the back, sides and on top. My hair looked like a scarecrow so I got annoyed and called my hairdresser. I’ve had it cut really short now with scissors, and kept it slightly long at the front. I avoided the shave but that may be on the cards in a few weeks time. It feels lighter and like I’ve taken some control both mentally and physically. It’s not good enough coverage to wear outside the house so I’m using my beanies and scarves now and having fun sewing up lots of turban headbands to coordinate with my beanies.
Which brings me onto my next point for those that have no hair now, how do you handle comments? A child at the end of our road asked me on the school run if I was bald under my hat, I said yes, almost, he then said ‘show us your bald head then?’ i just said well Id rather not, I’m keeping it hidden for now because im a bit embarrassed. He’s 6 and in year 1 with my son. whilst his comment surprised me, it didn’t hurt me. He may have been asking as a child in the school is having chemo too.
I suddenly thought If a 6 year old asks me then a cocky 16 might and I need to come up with suitably prepared response for both. Truth is my little one was with me and I’m quite happy to show my bald head if it’s completely bald or growing back and short but with bald patches it looks like crap and my 6 year old is very sensitive and worried about cancer. He doesn’t like the word mentioned as he’s scared so anything I can do to ease things for him I will do - if he wasn’t with me I’d have been brutally honest and said Im quiet sick, I have cancer and my medicine makes my hair fall out, and do you know it’s quite rude to ask or if I was an older teenage I might say something stronger. Is there a right way to deal with this I wonder?
Cross stitch has definitely been keeping me busy, unfortunately I get a little bit over obsessed with it and cant put it down haha!
At the very beginning of my treatment and on my first outting, I wore a mask to the supermarket and a gobby 16 year old walked past me and said to his mates “imagine still wearing a mask in 2024”. I cried instantly and left. Think it was a combination of getting myself worked up about actually leaving the house and my fears being acknowledged (that I stood out against everyone else).
However, I have very short hair/bald patches now as I took the plunge and shaved it all off after most of it fell out. I saw an old friend out on a walk yesterday and was wearing my beanie, she said “oh wheres your hair gone!?” And i just instantly said “Im having cancer treatment”, i think she felt more embarrassed than I did. Its difficult in your situation as I understand you want to protect your son. Maybe having a light conversion with him about people asking questions when you are out with him? Ask him if it would be okay if you explain to people if they ask?
@snoop182 yes I’m glad it’s starting to work but now I have an itchy bum which is awful. Fed up of having bowel problems now.
I’m sorry you’re experiencing questions from other people about your hair. It’s horrible when you feel you stick out and people looking at you. I don’t know what I would have done in your position. I’d probably want to leave and stay home.
@glitteryrainbow I did ask my son if he heard and whether he would be upset if I said I had cancer and had lost my hair, he said he didn’t want cancer mentioned. But he did say If anyone asked him he would say his mummy was having chemo and loosing my hair meant the medicine was working which I guess is one way of explaining it is they are old enough to know.
Thumbs down to the itchy bum @rosa1 could you perhaps try some bum cream maybe a call to the doctors who may suggest something to alleviate the irritation.
Hi everyone, thanks for the well wishes. I got out on Friday and straight into a busy weekend so I’m exhausted but it was really nice to have a bit of normality. (A tip for hospital bags, if you get admitted it will be 48 hours minimum so pack accordingly, I assumed 24 hours)
It sounds like everyone is having their own issues to deal with. I’ve also got low blood pressure and bald spots but definitely not constipation, completely the opposite which kept me in hospital an extra day.
@snoop182 sorry to hear you’re worried about comments. I’ve given this some thought as I’m wearing masks everywhere but I’m still not sure what I’d do. If I was on my own I’d want to shame anyone making stupid comments but if I was with my daughter I’m just not sure. It’s so hard.
Is anyone going on to docetaxel? I have my first on Thursday.
Also is there anyone else having surgery after chemo?
@snoop182 im trying to avoid going to the GP about this as it’s embarrassing. I’ll see how it goes over the next few days and if it doesn’t get better I’ll make an appointment with them.
Good luck to those finishing EC. My last EC is on 18th July. Those who are starting paclitaxel it would be good to hear your experience of this compared to EC and how peripheral neuropathy is. I don’t start this until October. I’m imagining most starting on the T side of ECT will be starting this month.
There’s a lot of experience with docetaxel in the last couple of months chemo starters threads. Experiences vary widely but the general advice is to expect diarrhoea and from my personal experience, don’t start your first docetaxel with any sort of laxatives. If you feel like you’re a little bit constipated to start out with, try more fibre and water. I took a few doses of laxido and ended up having to go into hospital because it went too far the other way…
Hi @rosa1
I have started Paclitaxel after Ac which is similar to EC. It’s a walk in the park comparing to AC. Less brain fog, no appetite problems or taste, no nausea. Neuropathy a little bit on days 1-4 after treatment. But goes away then. I am cold capping and have found it is harder on hair than AC which is not meant to be the case but could be just me.
Best of luck!
Im on docetaxel and cyclophosphamide and herceptin - hard to tell which is causing which symptom but i seem to get constipation afterwards. Feel nauseas days 1-3 day 4 i start to improve and day 5 start to feel more normal. Everything tastes strange for abouta week afterwrds. Mine is every 3 weeks. I’ll be asking the same question re herceptin as this continues for 5 more injections after my chemo ends until nov. Although im on it now im not sure if that is contributing to any of my side effects so not sure how this wil, effect meon its own and im due back to work in September/ October.
@SL255 im sorry it’s having a bad effect on your hair. It must be upsetting as I heard it’s less harsh on the hair. Today I washed my hair and another large clump came out after. I dread showering as my hair is starting to look thinner day by day.
Thanks @rosa1 Yes when the amount gets larger it’s like a race against time! And especially as it will continue for weeks after chemo is done, or so I hear.
With regard to showering, what works for me is to comb before you shower to lose the dead hair and less comes out and then don’t comb when wet. I use a colder setting on hairdryer to take wet out of it but don’t touch my hair when drying. I also use a plastic jug instead of shower head so it’s more gentle and foam the shampoo in my hands and put on really lightly. Conditioner only on ends and apparently not good to use a leave in conditioner as contributes to hair sticking together so more can fall out. Hope that helps!
Glad you’re feeling better @tori123😊
A hospital stay is never a pleasant experience
I’ve just finished 3 x EC and onto 3 x Docetaxel and phesgo next, which I’m not looking forward to reading some of the side effects from the other monthly threads, I’ll also be having surgery once the chemo is over…
On a positive note had ultrasound yesterday and it showed my tumour had got smaller, which makes the chemo a bit more tolerable knowing that it is actually working
@SL255 I always comb my hair before I shower and wait until it’s dry to comb it again. I find that after I shower I can see a large amount of hair that’s shed and is hanging off. I also don’t use a hair dryer at all.
Hello!
Ive just started paclitaxel and carboplatin, last Friday. I felt much better on Saturday and Sunday but then Monday the side effects hit me. They are still not as bad as EC but still there. Just nauseous, foggy brain and tiredness. My oncologist did say that the first time round, it might be a bit rough because of it being a new drug, so I’m hoping from Friday this week, ill start to feel better. Ill keep you updated but everyone I have spoken to has said that paclitaxel is a lot easier, so heres hoping x
Hi @glitteryrainbow another step forward! thanks for letting us know how you’re going, hopefully your side effects are just your body adjusting to a new drug and don’t persist . Do you think it’s the Paclitaxel or the Carboplatin causing them? If they continue, I wonder if your oncologist might consider reducing the dose, I think there’s always a margin they can look at. But hopefully things settle down for you. Keep glittering .
I am convinced it is my blood pressure/blood sugar level that is making me feel dizzy and poorly. I felt really dizzy yesterday, drank a lucozade and felt so much better about 20 minutes later and was able to go for a walk with my doggies for 40 minutes! I will speak to the oncologist when I see them in a couple of weeks, I’ve been reporting my dizziness since round one and just get the response of ‘get up slower’ .
Ive woken up this morning and decided I’m not going to let this disease consume my life, sitting around feeling sorry for myself isnt going to make me feel better SO I’m going to do stuff that is productive during the day, rather than sitting around watching TikTok .
In other news, how are you lovely people? I find the days drag on and everyone says “you can come round any time!” But everyone is at work which makes me giggle, then it gets to the weekend and i see that as mine and my partners time so I dont really like planning stuff in on the weekend. Have you been up to anything nice?
Im so so far behind so will have a little read back. Feeling really sorry for myself today. I breezed (relatively) through cycle 2…after the clot, infection and general shocking time that was cycle 1. Then cycle 3… half way… just didnt bounce back…thought maybe an infection but called triage as i could barely walk. Bloods done monday revealed magnesium through the floor which would explain a lot of the muscle aches and palpitations!! I was given sachets which i havent been able to tolerate at all, awful diarrhoea and so now im sat waiting for an infusion. Its only day 9 of my cycle so i know ive got more time to recover but i feel so low right now
Hope that youre all having a lovely day, sending love xxx
. We’ve got this! Like you said, time will go quickly I am sure.
. Anyway… Rant over!
both mentally and physically. It’s not good enough coverage to wear outside the house so I’m using my beanies and scarves now and having fun sewing up lots of turban headbands to coordinate with my beanies.
thanks for letting us know how you’re going, hopefully your side effects are just your body adjusting to a new drug and don’t persist 
. Do you think it’s the Paclitaxel or the Carboplatin causing them? If they continue, I wonder if your oncologist might consider reducing the dose, I think there’s always a margin they can look at. But hopefully things settle down for you. Keep glittering 
.
