February 2025 chemo starters

[tigertot]

@dkc66 I know what you mean about the insomnia I’m only just starting to get a couple of hours either side of 3am .
I used to have long hair and I made the very painful decision to have it cut short. Absolutely hate it , but I’m so glad i did for the same reason as you. Its too traumatic losing it in long lengths. So totally by your side on this .
I’m cold capping too, and just sitting here waiting for the shedding to start. (by the way I’ve sent you a private message).
Hope all goes well today , big hugs x

@sg81 Hi and welcome to the group. We’re all here for each other with our ups and downs, and you are SO not alone with your anxieties. There’s not one person on here who hasn’t walked in to the chemo ward for the first time feeling frightened and anxious. The nurses are fabulous and will literally hold your hand through everything. Good luck for tomorrow, you got this x

[wba]

@dkc66

So many of us struggling with the sleep.
it’s getting me down now

The hair loss is so upsetting, even though we know it’s possibly going to happen.

Mine was coming out it shreds so ended up having a number 2.
Yes, I had a good but my daughter said if it’s doing that to your hair think what is hopefully doing to the cancer.

I’m still struggling with my wig a bit but trying to stay positive but it hard sometimes.

@tigertot
Probably best having it cut shorter, your doing so well with the cold capping, really hope it helps you. Have you been to the wig place yet, Just i case?

@sg81
Welcome.
Lots of support on here for you.
Wishing you well for tomorrow x

[anb1]

@wba
Your daughter is so right that is a really good way to look at it. I admire you ladies who have just cut/shaved it off. I am cold capping but my scalp feels so sore (sure it’s combination of chemo and not being able to wash hair very often) I dread losing my hair even though it looks terrible at the moment not being able to style it. I do have a wig ready.
It really does help to speak on here and to know we are all in this together

Xxx

[zoemac]

Oh @oldgirl1 that really did make me chuckle, so very apt
The waste management has been the main issue for me also, I was suggested some Busopan which has really helped with colon pain but the gas OMG! I’ve been using up all my stored fragranced candles!
Just finished the Hair, brow and eyelash workshop which was extremely useful, lots of tips on wig wear comfort and brow management! It lasted 90 mins via zoom and provides links to recommended products on the look good feel better website.

So sorry to everyone thats not sleeping and having rubbish side effects

Good luck to all today I’m in at 1pm for just Paxi so hoping for a short session

[tigertot]

Hey @wba ,
Yeah got an appointment for my wig on Monday. Still not sure how i feel about it or whether to just ware scarves and hats. We shall see. I’m expecting my hair to start shedding any day now, and not looking forward to it as even with cold capping it isnt a guarantee that it’ll work. But apparently it can help to premote regrowth after finishing treatment.

Im sorry to hear this is getting you down, I hope you can find a way of making yourself feel better in yourself. We’re all with you on this.
Big hugs xx❤️

[wba]

@zoemac

That made me lol

May try that zoom one.

I’m hooked up your probably finishing off now x

[wba]

Thanks @tigertot
Im sure that will look after you on Monday. They are very understanding there.
Worth getting a wig as you’ve got the choice then and see how you feel.

Presumably you got your voucher.

Must meet up for a coffee at some point perhaps if you wanted to. Nice to share our feelings with all this.

X🥰

[kav50]

@sparkleandshine and @zoemac and all others in the group. Hope you are all doing ok. Had first Chemo today and cold capped which wasn’t too bad.

Feeling bit tired, little bit nauseous and pain in back but that might just be from sitting down for most of the day.

Chemo nurses said I wouldn’t be able to cold cap with Pacxi as they are doing over 3 hours so nurses said I can’t have cap on for 1/2 hour before and 4 1/2 hours during and after treatment. Really want to carry on so contacted Paxman and they said would be fine. If it’s a single does chemo cap only has to stay on for 60mins after.

Thought this info might be useful for others. Going to try to push for it.

[naughty_boob]

Well done for checking with Paxman re cold cap. I cold capped with 12 weekly Paclitaxel and kept nearly all of my hair. Having access to the correct information is vital, I think the chemo nurses/appointment staff want to say no because of the time but it’s not them who may loose their hair! It’s up to you, yes it’s going to be longer time but it’s your choice and if Paxman says it’s ok then it’s ok.

If chemo nurse/oncology/ appointments say no tell them to get in touch with Paxman as they train all the staff. Get a name and say you’ll get Paxman to contact them! It’s not easy when you are diagnosed with breast cancer, let alone having treatment like chemo. You are fabulous. You are strong.

[misha]

Good evening ladies.
Hope everyone that had chemo today is ok. I went in for my pre-chemo appointment, they showed me arouns and stuff and explainsed as much as they could. I was worried of course. May had shredded some tiers too, as I got scared them might post pone it as i still have cold… been resting and taking fluids and naping when I felt like I needed. Feels like this week is practice run for next week. Days when I couldn’t do things,my flatmate made sure I was fed and cancelled all my work appointment too. And my oncologist send me to get another ultrasound for lymph node above my breast, as it looked different on MRI, but radiologist said everything is clear. In a way, as much as im shitting myself Im kind of relieved to go in on Monday morning. 3 friends dropping me off too. I feel like royalty.

[misha]

When it comes to hair loss, I know it’s different for everyone. For me, cold capping isn’t an option because I have a cold-induced allergy. Even if I wanted to try it, it wouldn’t be safe. I’ve already cut my hair shorter, and on the 1st of March, my friend will shave it down to zero.

It always feels like it’ll take ages for your hair to grow back, but from my past experience, it does happen—just not as fast as we’d like. The last time I shaved my head was on the 1st of March, four years ago, right in the middle of the second lockdown. At that time, it wasn’t cancer-related. I had left an abusive relationship six months prior and felt like I needed a fresh start.

A few things I noticed right away: Hats and cozy scarves become essential. We underestimate how much warmth our hair provides, and without it, the cold hits differently. The scalp is also far more sensitive than I expected—this time, with treatment, I imagine it’ll be even more so.

Once the hair starts growing back, it comes in oddly and can be frustrating. What helped me last time was booking a visit to my hairdresser every 3–4 weeks in advance. It gave me something to look forward to and helped keep my hair in some kind of shape as it grew out.

Another thing I found fascinating—my grey hairs grew back much faster than the rest. At first, there were just a few, so tweezers became my best friend. That didn’t last long, though!

One thing I’m more concerned about this time is my eyebrows and lashes. Since I usually dye my hair red, my hair has always been the main focal point. But without it, the focus shifts to my face—especially my eyes. If my eyebrows start thinning or disappearing, and if I lose my lashes too, it’ll feel a bit odd. I really hope I don’t lose them, but if I do, I’ll need to find a way to keep them looking natural so I still feel like myself.

I did book wig appointment for march, as I want to see how I get on with it, and need to get myself headwear too. But ites either too expensive or too boring.

[sparkleandshine]

Dear all, hope you all coped through the night, how is everyone feeling this morning. The chemo unit staff were lovely and I left there feeling very positive. I have had mild nausea but I am wandering if it is the chemo or me getting anxious about waiting for side effects so did not really sleep. What was positive is even though I was up most of the night I felt chilled and read a good audio book. Sending love and healing hugs to you all xxx

[tigertot]

Good morning @sparkleandshine ,
Glad to hear you were treated well and made you feel at ease. I found that getting the first one out of the way took away a lot of anxiety.

With regards to side effects everyone is different. But it is quite common to feel nauseous. Did they give you anti sickness drugs to take home?
I personally felt light headed , zero concentration, and woozy pretty much straight away. Then my side effects kicked in around day 3. (mouth ulcers, fury tongue, dry mouth etc.)

A little tip for you, its massively important to be really on top of oral hygiene. Brushing twice daily and regularly using mouth wash in between eating. Don’t let your mouth get too dry and keep up your fluids.
I wasn’t made aware of regular mouth washes, and ended up on antibiotics for a very sore throat and esophagus.

If you’re at all worried about any side effects that you’re getting just phone the 24 hour helpline, they are really good.

In the mean time were all here for each other so dont hesitate to share you’re thoughts etc.
xx

[wba]

Morning @misha

Yes the hair loss, eyebrows & lashes is difficult haven’t lost my lashes & brows as yet on week 5 of treatment but hair all gone.

I’ve booked the look go good feel better workshop which may help you.

If you google it put postcode in brings up your local one.
Some of our group already done it.

What area of country are you?
.
I’m just outside of Birmingham

Sad to hear you’ve been through a difficult previous experience in your life, thank you for sharing. Now you find yourself dealing with this.
The support given on this thread is such a help.

How lovely, your friends are supporting you on your first drop off sounds they they all got your back.

You got this, we will all to get through this together.

[tigertot]

It’s day 15 of a 21 day cycle of EC, and I’m feeling pretty tip top. My energy is back, discomfort of throat etc is gone and ready for round 2 next Friday.

I woke at 4am though this morning and my scalp is tingling. I can only presume that hair shedding is close by? I’ve been sitting and bracing myself for this moment. I know its inevitable, and I’m not entirely sure how I’m going to react when it does happen.
Wig fitting is on Monday and I’m a big fan of my beanie hats since cutting my long hair to a short style (Which I hate anyway).

Other than that, all good .

How are you all this morning after your chemo yesterday? Hope your OK xx

[wba]

@tigertot

Good to hear you’re feeling better this morning.
I know your scalp feeling strange & things possibly happening, it is hard dealing with it.

You’ve got your wig fitting booked so hopefully get sorted.

I’ve sent you a DM
If I’ve done it right!

@sparkleandshine
Good to hear your session went ok. Hope your nausea improves x

I’m feeling better at moment the nausea thankfully subsided a bit.
Hope everyone else feeling ok this morning? X

[pineapples123]

Hi all
Feeling ok after chemo yesterday. I’ve got a district nurse coming today to make sure I’m doing my filgrastim injections ok.
@tigertot are you cold capping . I’m on EC but every 2 weeks. I’m day 16 now. I’m just waiting for hair shedding. I’m cold capping but I know you still shed and your result is unpredictable. I’ve got a wig fitting on Monday too.
@wba glad you feeling ok after your chemo.
Good luck to everyone who have started chemo and waiting to start.
You feel so much better once you start
Xxxx

[dkc66]

Perhaps I should wait to type this when I am more upbeat as on a downer today. 2nd chemo yesterday went ok though i came out in hives again and needed double amount of piriton intravenously to get rid of them. Didnt sleep a wink. Even though Ive cold capped, about 70% of my hair has gone. I will get my head around it but for today theres been many tears. I think its because I suddenly look like a cancer patient. I didnt get this upset when I had a masectomy, which is crazy. My scalp is so sore at moment that dont want to put wig on. Ill get a scarf from amazon today to wear tomorrow. After 1st ec I felt fine next day but this time feel weak and am just watching tv though concentration is rubbish. Tomorrow Im sure I will be more positive, I have to remember the bigger picture!

Im near Horsham by the way. Is anyone else close by?

[anb1]

@dkc66 sending you much love it is truly hard and I haven’t even got to the hair shedding part yet. It will break me I know. Is that 2 you have had now? I know how you feel it helps me to know that everyone on here understands. I hope you feel a bit better tomorrow xxxx

[zoemac]

@dkc66 same here had Chemo yesterday and didn’t get to sleep till gone 5am! Feeling really low today too I think its the anticipation of another weekend of side effects especially the upset tum, only just got out of bed as can’t face eating/doing anything (4pm) but needed to take my meds.

Glad you’re all feeling ok @pineapples123 @wba @tigertot another one down

@sparkleandshine I think the pre-med steroids make sleep difficult too for a couple of days. Really good you’ve had a positive first time.

@misha The Look good feel better hair, brow and lash workshop online was really good for tips on brow stencils and products to use to get a natural look, along with some great tips on scalp care, like silk pillowcase and cap to protect delicate/sensitive skin. The head caps that can be jazzed up with hairbands where not too expensive when I checked out some of the link websites, around £3-6 for scarfs etc… and I think the fringe piece to go under a cap/scarf was £18 and comes in a variety of colours. Ladies Hairpieces & Addons » Fringe » Wigs4U

So grateful for this forum, makes it much less lonely