Cancer Support Thread 96: It’s nearly Christmas - get the sprouts on.

[LemonDrizzle10]

New thread - old one nearly full!

@hennipenni My chemo started with EC which is known to cause hair loss for alot. I had fine hair that frankly needed alot of upkeep so I didn't cold cap as I wouldn't be able to blow dry or colour the grey. I had no loss for the first two weeks..then it fell out in sheets. I never shaved. I just lopped it off myself with scissors and whacked on my wig (outdoors) / beany (indoors). The straggly bits i was cutting soon fell out too. I found it so so hard loosing it but now I forget im wearing my wig sometimes
Mine started growing back on paclitaxol which was the second half of chemo. I now have alot of white fuzz. I feel a bit bolder now and plan to dye it in a few weeks then embrace the buzz cut look!
Hope chemo is being kind to you..how is being in hospital?

@hennipenni ive been able to cold cap and kept it through paclitaxel. As @somewhereonthe517 days, EC is harder so I’m shedding.

Before chemo I had my long hair cut shorter. If need be, I’ll shave down as I don’t want to block the drains!
Due to the high amount of shedding, I’m wearing chemo caps / scarves as otherwise it goes everywhere. I have a soft one to sleep in and a few comfy cotton ones for day.

I’ve also got a wig appointment next week as I’ll need this for work. My oncologist nurse has sorted an nhs wig voucher for me. You’ll also be entitled to 5 years’ free nhs prescriptions so at some point get the forms for those from your team.

I’m very comfy in my caps and don’t mind going out and about I them - it’ll be either bobble hat or sports cap weather when you’re out so you can rock the look.

Photos of what I’m finding helps (links to shops can identify users and I’m not savvy enough to sort that!).

Search “chemo caps” on Amazon. Masumi and Osvoyo have worked well for me. The bamboo sleep cap from jasmine silk is good.

For a treat, I got an old fashioned type of cap from “silk and lawn”- I was lucky to hit their sale. These are handmade and the sewing is very good. They will help on sizing if you’re not sure what will work.

@hennipenni it's very tough to lose your hair. I found it almost more upsetting than my diagnosis to be honest. It's not vain! You aren't alone in finding it hard.

I just let mine fall out (didn't shave or anything) - I had EC first, and cold capped, but still lost about 90% of it. When I moved onto paclitaxel mine started growing back, and I either wear scarves or my wig when I'm out and about. I've finished chemo now, and in a month or two I will ask my hairdresser to tidy it up a bit so it's more even. But some people choose to shave it to get it over with. Do whatever you feel is best for you.

Some good news from me - the lumpectomy got everything with clear margins, nothing in the sentinel lymph node 🎉🎉😁

Onwards to the next challenge (radiotherapy) ...

Blooming brilliant @BatshitCrazyWoman really pleased for you. 🎉🎉🎉

@BatshitCrazyWoman that’s excellent news for you 😊, good luck with the radiotherapy. How long will you have to wait to start?

With regards my hair, it is long and very thick, I think that once I’m out of hospital I’m going to go and see my lovely hairdresser to cut it short for me, I’ve also got my daughter on the case to find headwear for me (I don’t usually wear hats at all so this will be interesting)

@dancingwhilstfacingthemusic that’s a good idea re wearing a covering at night, my hair is so long and thick it will end up everywhere!

@somewhereonthe517
loving the idea of embracing the buzz cut! I had a bit of a midlife crisis before Christmas and had the underneath of mine dyed pillar box red with blond on top!

Chemo is hard, I’ve also found out that due to a chromosome I have I’ll be on a certain chemo tablet forever, this particular Ne is what’s making me sick, at least the side effects from the weekly chemo only last a couple of days (I hope)
Kind of getting teed to hospital life, the days go slit quicker than I thought as there’s always done doctor/nurse/housekeeper etc etc popping in and I’m being very well looked after.
My bloods today came back showing my HB is low so just waiting for a blood transfusion, hopefully this will help me feel less weak, dizzy and short of breath 🤞🤞

Please excuse typos, too tired to check!

@BatshitCrazyWoman ..that's a brilliant result! So pleased for you!!
@hennipenni no apology required for typos! I know nothing about blood transfusions except to say everyone I've read who has had one seems to get a massive boost so hope that's you too!
The thing in the sky has actually appeared her today and it felt (shhhhh) a bit spring like!

My mate had to have a blood transfusion for chemo reasons and was very quickly feeling better. Hope it’s the same for you. 💐

@hennipenni i lost a lot of hair even while cold capping. I’ve posted these pics before but this was at itsworst. I didn’t shave my head.

I finished chemo 21 jan and this is the current situation.

im having my surgery on Tuesday. Single mastectomy with reconstruction.

@hennipenni I hope your infusion gives you the boost you need. My 89 year old mum always says she feels 50 years younger after one!
I had 1st EC on Friday, feeling a bit "off" but generally okay except now a slave to phone reminders about tablets, injections etc as others have said before.
@ememem84 good luck with your surgery on Tuesday. I always felt fortunate to have had surgery before chemo - irrational as the plans depend on what's best for the individual patient.
Thanks for your hair pics too. As I have fine and fairly thin hair and am having EC the stats suggested cold capping wasn't worth it for me when I factored in the time and the cold but it's brilliant to see how well it worked for you.
I have a wig appt on Wednesday so, having been a mousy brown pixie cut almost all my adult life, it might be time to become a blonde or a redhead. My (bald) but very supportive husband is coming with - our daughters suspect he's hoping for a 2 for 1 deal.

Good luck for Tuesday @ememem84 My hair is similar, although some shorter bits, and some curly bits 😂 Growing though, so I'm not complaining!

That’s it! Hair is growing. And it’s mine.

Hi all

Am feeling sorry for myself today! I feel like I'm not coping that well with this EC chemo. I should be feeling positive, because I have done all 3 ECs, and am on day 5 of the last one, so EC chemo is basically done. Then we will move onto docetaxol. I keep googling to try to see whether EC is worse or docetaxol is worse, and the results are mixed. I just don't know if I can do 3 cycles of docetaxol if it is worse!

My problem with EC is that I just feel weird and nauseous and horrible. Everything just seems wrong and a bit gross. And my lips are tingly, and I feel tired and weak. Bleurgh.

I do remember that in the last two cycles, by day 9 I felt basically fine, so I just need to hang on, but feeling a bit down today.

I see people are talking about hair, and for me hair has been a lot less of a problem than I expected. I have cold-capped, and my hair has thinned but there is still quite a lot of it there. I am wearing scarves/hats because I think there are patches where it is too thin, and also because my hair just looks shit without being able to style it properly! If it grows back on the next regime I'll maybe be able to make it work... I imagine I will look a bit like highland cattle with some long bits and some short and curly bits... but we will see.

Sending lots of support and solidarity to you all. You all seem so brave and capable - I am in awe.

Solidarity, @breastcancerpanic , I’m on day 6 of EC #3 of 4 and I think this is the grottiest stage. Mouth like a budgie cage, tiredness and aches and everything else. Hopefully in a couple of days we will both be feeling lots better. I’ve recognised that I have a couple of off mental health days at this stage too - combo of coming off steroids and everything else, so am telling myself that it is expected to be feeling sorry for myself - and heck, why shouldn’t we! I’m keeping hydrated and trying to move a bit (short walks and stretches). Currently, sitting on a heated blanket is easing those spicy filgrastim aches.

If you’re worried about the next stage give your onco nurse a call for a chat. I had a bit of a bad reaction at the end of my paclitaxel and communicated that to my team. They tweaked meds and doses. There is a lot they can do to get us through chemo side effects.

You’re also bloody brave and capable. Give yourself a hug from the amazing women going through shit times.

Sorry for the radio silence, had chemo on Friday and it knocked me for 6 this time

My white blood cells are at the count that they should be so I’m being allowed home today after 2 weeks in hospital as I’m deemed sensible enough not to put myself in any danger etc
chemo continues as an outpatient etc

re hair loss, it’s not bothering me at the moment, I see it as one of those things that I’ve accepted, although this may change in the cold reality of day when things have sunk in properly

I’m excited and looking forwards to going home, especially seeing my old poorly dog but filled with trepidation at the same time as I’ve got used to my own little bubble here!

I am really flapping. Touched my neck about ann hour ago and found I had a swelling (lymph node?) just above my collar bone.

Called breast cancer nurse but got answer machine as always.

Now that the panic has worn off a little I’m not sure what I’m supppsed to do with symptoms like that now? obviously lumpy boob would be code red but lymph nodes can be lots of things so how long am I supppsoed to wait to see if it goes down?

The BCN said a while ago (before I was put on targeted therapy) any new cancer symptoms I should go to gp but I’m on abemaciclib so I’m still linked to cancer hospital (not same hospital as BCN is linked to) and will speak to an oncologist next week. But it’s a phone appt so it’s not like she can check for me. Or should I be calling the chemo helpline as it’s also possibly an infection and I’m on abemaciclib ? (I was told for this purpose abemaciclib counts as chemo).

I am convinced it’s gone down again now so I’ll feel silly when BCN calls back. I did make my partner feel it so I know I wasn’t imagining it at least!

God this is just going to be my life now every time I get a cold 😭

Had my final meal until post surgery! Kids stuff is ready for school tomorrow. Dm is taking them. I need to be at the ward for 730.

no idea what time surgery will be but I’m hoping I’m first on the list. Nervous but just wanting it done now.

still need to pack a bag:…

All the very best @ememem84 I hope you’re first on the list. You’ll go to sleep and when you wake up what seems like moments later, you’ll be another step along this road.

Good luck @ememem84 I hope you're near the top of the list so you aren't waiting for too long. This time tomorrow, this part of the process will be over!

@ememem84 Sending love. Weird, discombobulating time for you. I join others hoping you’re not kept hanging around too long tomorrow. KBfuckingOn

Please can I join?
Approaching Round 2 of R-CHOP for DLBCL (lymphoma), currently neutropenic and took my first Filgrastim injection yesterday evening. Oh my back!
They seem pretty confident my levels will be ready for chemo this week though.
Awaiting brain MRI to rule out 🙏🏻 CNS involvement. Balance is shot, legs are numb.
This is by far the most terrifying ride I’ve been on yet all around me life goes on. Teens having usual difficulties, everyone else going about their day jobs. That used to be me. It’s surreal and I want to wake up.

I'm sorry you're on the thread that no one wants to be on, @OhThatsJustGreat You're really going through it - sending love, and hoping for good news from your MRI.

Morning all.

Good luck @ememem84 .. let us know when you are pout the other side!

Welcome @OhThatsJustGreat.. so sorry you find yourself here but this part of munsnet has been a lifeline for me. It seems quite a cocktail you are on chemo wise. Are you listed for a set number of rounds?
The filgrastim was a surprise to me too. My back did little spasms after one particular shot. I started using paracetamol and an antihistamine an hour before mine and it did help.

I have two teens. I found it so hard to concentrate on the usual teen issues when first diagnosed which I couldn't fathom as they were my main motivation for getting through this shizzle. The hurricane in your head will slow a bit some days..some days it just won't. Mentally this is hard to manage and is alot worse when you don't get sleep IMO. I was horrendous at the beginning of all this. Kate Middleton came on the news announcing she had finished chemo..on the day I started. My 'D'M couldn't understand why this upset me. You will be low / wiped out already. Sending a hug ..stay around for support and to vent. There are some amazing ladies on here x

Hello!
joining on the recommendation of @dancingwhilstfacingthemusic after I posted a pre chemo hair question on the cancer forum.
Recently been diagnosed with stage 1c2 ovarian cancer. Waiting further surgery and then chemo.
Late 30s with young children who are keeping me positive.