Hope chemo went well @snoop182 x
I’m wondering if the constant rubbish feeling is what’s making me emotional.
I had a little good news today as I met with my oncologist and he said the tumor feels softer and smaller so he’s happy it’s working. For some reason I’m not as happy as I think I should be. I think I was secretly hoping he’d say “it’s all gone, best response we’ve ever seen” ridiculous I know!
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I think it’s normal to want that tori, you want to know that all this is worth something but don’t forget that the chemo is also there to sweep up all the tiny bits too so whilst a tumour may shrink it’s all the bits you cannot see or feel as well. At least that’s the way I think about it. You’re also feeling fragile and not yourself and that is an emotional thing as your bedrock and normal equilibrium is gone x
My chemo went as well as expected thanks. Bad headache again from the cold cap, and I felt very sick and dizzy when the cyclophosphamide went in. Combined with the headache it was a little bit worse than last time but was over an hour and a half quicker so thats something to be thankful for. Feeling especially jaded tonight - only four hours steroid affected sleep last night combined with chemo so I’m off to bed now.
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Hi, @Tori84 I don’t find I get emotional but I get really miserable and sorry for myself around days 4-6. I think it’s because that’s when I feel the worst, especially this time round on my 3rd cycle of EC. I hate the way my insides are so messed up and that nothing tastes right, that I don’t look like myself anymore and my body aches and I can’t settle to do anything. It’s day 7 for me now and I have managed to sleep till nearly 7am so I’m hoping this is the corner turned and I’ll start to feel better from today.
Sounds like it was really good news from your oncologist and hopefully it will start to make you feel a bit better that the treatment is working.
Good luck getting through the chemo side effects @snoop182 x
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Hi everyone, just catching up on all the messages - I’ve been quiet this cycle for exactly the reasons you’ve written, @dragonk - I’ve felt very fatigued as well, like I’ve never experienced before. I went to the supermarket yesterday and literally could have dropped to the floor and curled up I felt so tired! My eyes just want to stay closed, but at the same time I’m restless.
Cycle 3 (last EC) at 4.30 today 
. I’m not prescribed filgrastim (was worried about that but also relieved I wouldn’t have the side effects) and my bloods were fine for cycle 2 but this time my white cell count is low (1.3) and it was 50/50 whether to delay today’s infusion but the oncologist decided to go for it, just said to watch my temperature and call rapid response if I feel unwell.
I feel like I’m walking into a train tunnel! @tori123 i think being anxious and emotional is all part of this and I hate that chemo robs us of so much.
Sorry for the negative post, I’m just worried. I’m sure it will be fine 
xx
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Hey everyone, like @hopefulheart I’ve also been quiet, for exactly the same reasons and the fact that I wanted to take time away as I felt like cancer was taking over more and more of my life - like it’s the only frame of reference people have with me at the moment, so it can be all I talk about and I don’t want it to define me like that! So I’ve had a breather, plus I’m now exactly 2 weeks post chemo so feeling better physically and emotionally at the moment!
But I can see from others posts just how much of an effect it’s having on all of us and I wish you all strength in these low moments 
and courage to face the next round when it comes.
The hair loss thing is hard, I have been acclimatising myself to Victoria (my wig!) and after initially hating her (harsh I know 
) we are now on speaking terms and I’m learning she is actually alright! But I am now starting to lose my eyebrows and lashes, which I’m particularly gutted about 
and I fear attempting to draw eyebrows on myself and looking like I have McDonald’s arches instead 
plus I also have ridiculously stubborn ankle & toe hair so I look like a bald hobbit… the joys!! Xx
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Hi all,
Due to have chemotherapy today but woke up full of cold sore throat.I have phoned to say i dont feel well enough to have it today.Does anyone know if this will knock me back or whether they will just write this one off as such.Any advice would be great thank you❤️xx
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Oh @budsbails2301 that’s rough - sorry you have developed a cold on top of everything - I’m sure you’ve done the right thing for you in cancelling today. Others might be more able to confirm, but I don’t think a small delay affects the efficacy of the treatment, it seems to happen a lot for one reason or another.
Hope you recover quickly - probably good that you have caught it at the end of the cycle rather than the beginning, but still hard to cope with both emotionally and physically. Rest up xx
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Hi Hopefulheart,
Thank you for your reply,yes hopefully wont make a massive impact for my treatment.I know at the moment i wouldnt be able to sit there,im just about able to sit up for 10 minutes at a time due to feeling so fatigued xx
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Hi @kiltie glad you’re feeling as good as is possible, we have to make the most of those times - I get you about cancer defining us. I’m so weary of people’s well-meaning comments ‘you’re doing so well’, ‘you look great’ (the missing word being ‘considering’ ). And ‘let me know if you need anything/fancy a coffee and chat’. I don’t mean to sound ungrateful at all but I do struggle to respond to these kind offers.
Love that you’ve named your wig! I have one which I call my ‘newsreader’ wig - it’s nice, but very perfect, which is definitely not my normal style - I’m actually enjoying not having to make myself look presentable, I just pop it on and hey presto! Might be a bit hot now the weather has finally warmed up though.
I’ll stop rambling now, just trying to keep my mind off the time! xx
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Thanks for your comments everyone,
I think going through the last cycle without my otherhalf and daughter close by was harder than i thought.
Welcome back @hopefulheart good luck with the final EC!
Naming the wig is great @kiltie, I’m going to call mine Moira (if anyone watches Schitts Creek hopefully you’ll get the reference!) She is currently in the spare room window freaking my neighbours out.
@budsbails2301 you’ve done the right thing, hopefully they’ll give you some antibiotics or something so you don’t have too long of a delay. When I spoke to my consultant she said they like to do surgery within 8 weeks of chemo to avoid losing any benefits so a small delay I’m sure is fine and probably factored into everyones original schedule. Hope you feel better soon.
Im going to take a lead from you all and check out for a few days, hoping for some sunshine and laughter xxx
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Yes I have little spots around my eyes Iv never had before xx
Hope you’re all doing ok and have had a good week. My weeks been ok so far. Felt quite normal which is good although my hair is looking thin but for the past 2 days the shedding has slowed down which I hope continues. Not looking forward to my next cycle as worried the cold capping will hurt more now that I have less hair to protect my scalp.
Hi all, checked out for a few days too. Rough cycle 1&2 but a change in meds for cycle 3 has made a massive difference and only had a couple of rough days which were not nearly as bad. Cycle 4 due next Friday before moving to Paclitaxil x 4. Hoping side effects are manageable for that too.
Hair almost all gone but what I have left is still growing so hubby went over it with his clippers this week and it looks tidier now. I didn’t cold cap and the week it started shedding was defo my most emotional one but once it was all gone (shaved after a few days), I felt so much better for it.
It’s such a cruel thing to lose our hair through this treatment isn’t it? For the first time since my diagnosis in January, I saw myself as a stereotypical cancer patient as my outward appearance hammered it home 
. Scalp is a little dry now and I am struggling a bit with sweat even with a bamboo scarf when out and about. Anyone have any tips for a good scalp moisturiser to put on it or even a top tip for a cool covering? I’ve ordered and returned hundreds on Annabandana and Amazon.
Mouth sore this cycle and Difflam/Bonjela/salt water not really helping. Any tips on that too?
Hang in there folks. We are all doing fantastically well x
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My nurse recommended Coconut oil to keep the scalp moisturised. This was after seeing my baldy top patch at chemo last weds which has got worse now. I’m calling it my monk mullet🤣 It’s very dry, flaky and with little sore spots which seems to get worse before a shed. I can’t really have my hair down now and with my hair back it only just covers it. The kids don’t seem to mind it as much as I thought they would which is good.
Been wearing a silk scarf today mostly inside so I can get used to it, practice tying it and keeping it on. The silk is a bit slippy but I’ve bought some colour coordinated kids scrunchies and am securing it with those. Will brave wearing it out next week sometime and heading to my hairdresser for some help with a shorter style next weekend. I still have a pathetic pony rats tail poking out the back which is a bit pointless now. I think I will still cold cap though as I have two cycles left.
On the headwear I’m not sure I can offer much advice - I have a few beanies and caps with headbands which I think are a bit hot and maybe my go to for September. And I’ve bought some cotton and linen fabric aiming to sew them into some bandana triangles - I think cotton, linen and viscose are better at wicking sweat away so maybe try that. Or maybe a soft cotton baseball cap.
Starting to feel bit better now after cycle 2 still fatigued but doing that filgrastim in the evening has certainly helped the achiness.
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beauty despite cancer do a nice scalp care kit might be worth a look if the coconut oil doesn’t work 
Shi xx
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Hi @hopefulheart , hope you’re doing well
Was just catching up with posts, and read you weren’t prescribed filgrastim on your 3rd EC, did they say why they weren’t prescribed?
I had my 3rd today and and when they gave me my take home drugs there was no filgrastim , so thinking they’d forgot it I said oh you forgot the filgrastim, and the nurse got me a pack , just worried now am I supposed to have them🤔.
Will probably ring and ask tomorrow, just for my peace of mind.
Has anyone else had the same?
Hope you’re all doing ok:heart: x
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@specialk2 I’ve never had the injections - was a bit freaked out when I realised but my oncologist said he goes for a personalised approach and would give me them if and when he thought they were needed. sounds like for you they just forgot! sometimes you really have to be on the ball, the nurses are so busy. Good that you mentioned it.
I was more worried this time because although after round 1 I seemed to bounce back okay, my white blood cells were only at 1.3 and the cut off point for treatment is 1.0. Still had round 3, but obviously that means they will reduce further and there will be more risk of neutropenic sepsis. So I’ve just got my fingers crossed and trying to keep out of trouble until day 15!!
But it’s my 60th soon and I really want to do something to celebrate - I’ve lost lots of opportunities this year including a skiing trip and concerts! so I at least want to try to get out for a meal somewhere!
I’m starting to feel okay again now - well as okay as we can! taste is going as usual, and I’ve got horrendous constipation this time, don’t know where it’s all going but I’ve not been properly since Thursday 
. The sunshine is helping the mood though - and I’ve had to learn how to tie a few scarves because it’s too hot for wiggy.
Hope everyone is surviving, we’re all warriors xx
I absolutely recognised what you said @hopefulheart about struggling to respond to offers and comments! Sometimes I just want people to not even ask how I am… Anyway, I am keeping my fingers crossed for you that you stay well and get out for a nice meal for your birthday 
Had to laugh @tori123 when you said Moira (aka: wig) is currently in window freaking your neighbours out, I put Victoria on stand on top of a high cabinet in bathroom and freaked hubby out who was convinced a bird had got in the open window and was perched up there
@rosa1 I’m not cold capping so don’t know for certain but have read that some people wear wig liners as an extra layer for cold capping when they lose hair. Glad that the shedding has slowed down for you though.
@lepw1705 good to hear that the change in meds have helped for round 3, which gives you reassurance for round 4. Not sure about anything that helps cooling the scalp, but I did buy myself a portable usb fan that I use if I’m feeling particularly hot with wig/headcover on. Although I also just go bare round the house as much as possible these days. My scalp was also dry and just started popping a little jojoba oil on it morning and night as I had it in the house anyway as it was recommended for my nails - It seems to be helping anyway!
Finally, I know I’ve asked this previously but I finally got a date for a PICC line but am super anxious about it as my oncologist was very reluctant and kept talking about infection risks, but nurses referred me as they’re the ones injecting me and say I have small troublesome veins! Just feeling confused and interested to hear if anyone who has one has had any issues or if they feel benefits outweigh risks?
Sending strength and best wishes to everyone xx
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Can only speak for me @kiltie but the PICC has been the saviour of all this for me - my veins were destroyed ten years ago on my last foray with BC (different breast, different type - I’m going through genetic tests at the moment because my mum passed away of ovarian cancer at 46 - hoping it’s just massive bad luck).
There is a risk of infection of course but it’s really well dressed and the district nurse has been coming to flush it weekly in between infusions (although soon I’ll move to weekly Paclitaxel so I’ll get that done when I have my bloods taken).
The insertion is completely painless and not at all uncomfortable - I didn’t look, they were very efficient and lovely and it was all over very quickly. Took a few days to get used to the thought of it, more than anything else. And the benefits are immeasurable - they take bloods from it and it’s really simple on the day of chemo.
Maybe others have another perspective they can give you but I’ve been very glad of it. I’m guessing it will go after the 9 weeks of Paclitaxel (early September) - I’m having herceptin until May 2025 
so I guess blood will be taken normally for that.
Hope that’s useful xx
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I agree with @hopefulheart @kiltie the picc line is so easy, ok the dressing has to be changed every 7 days but as for administering the chemo and taking bloods it’s so easy
The insertion was straightforward and painless to, took about 40 min,
Have a fab 60th birthday @hopefulheart, a meal out is always a nice treat, it’s my birthday next week so hopefully the weather holds up to find a nice beer garden to sit in .
Take care ladies xx
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