Cancer Support Thread 95 - No googling allowed 😊

[LemonDrizzle10]

New thread - we need to stick together!

@somewhereonthe517 hopefully this will help:

www.nhs.uk/medicines/anastrozole/how-and-when-to-take-anastrozole/

Final question - when did you know when to brave the shave? I tried cold capping but after the second one my hair is coming out in handfuls. My hair dresser said she’d come round to my house and do it when I was ready. Feels slightly too early. I still look like k have a head of hair but by this time next week there will be large bald patches if it carries on this drastic

This is my question too @Littlecaf I hope to try cold capping but have to be realistic. I have very long hair so am wondering about going shorter anyway before treatment to make things easier to manage and less painful when it starts to drop - I think even with cold capping at it’s best I’ll lose some.

Its hard to know with hair but if not cold capping when it goes (often 2.5 weeks or so in) it goes quite fast generally. Cold capping has variable results and often people may end up with say hair 50% thinner - when hair returns it then often comes in curly (chemo curls) and normal thickness so end up having to get old hair cut off.

If it were me pre cold cap I would get it shorter but maybe in stages and see how you get on. If not cold capping it is very quick like maybe all hair can go over a few days and quite messy and distressing having it come out plus can block sinks etc so then a lot choose to have all off before. I did weekly Pax and not allowed cold cap but did my own version of frozen peas on my head under a tight cap and it saved around 40% and I kept it bob chin length and it looked OK until the rest of the hair came in at 100% and really curly so 2 years in my hair is still that length as I don't like the curls and cut them off. Some people do like curls or style them - I couldn't be bothered with all that so stuck a hat over it. A lot wear wigs but really depends what you prefer. There are lots of chemo hats on Amazon, though found easier in cooler weather with some lovely woolly ones or velvet ones.

@Penguinsa thank you for your reply. 8 had my hair cut chin length bob just before chemo and last week had my second chemo session - today it’s coming out in handfuls and I’m picking bits off every jumper, top, pillow etc. I suppose if it carries on like this then next week will probably be make or break with the hair - part of me is ok with having it all off because once it’s gone I don’t have to deal with losing it! I think I’m going to give it a week the ring my hairdresser. Just wondered if anyone had a light bulb moment when they realised that it was time to go for it.

@somewhereonthe517 Anastrazole has a half life of 50 hours. This means it takes 50 hours for the drug to reduce to half the amount in your body. You should be fine as a one off.

I cold capped and lost loads of hair between my 2nd and 3rd EC (I had 4 cycles of EC every 2 weeks) so had to start with head coverings. I wasn't going to continue but the nurses in the chemo unit convinced me to. I did lose more but the rate slowed down and it started growing back while I was on weekly Paclitaxel. I did lose 2/3 to 3/4 so it wasn't a great success but I'm glad I persevered as I definitely think it helped with the regrowth!

Thank you for replies re anastrozole! Very appreciated. I posted and then started watching who do you think you are on catch up! Love that programme and love that there are some distractions I can loose myself in. Interested in the cold capping too. I'm going to try it if I can. Mine will all come back grey for sure.

Are there any recommendations for where to go for a reasonable wig ?

Hello, really didn't want to be here, and I don't know if I belong. I found a lump 3 weeks ago, was referred to the one stop breast clinic. That appointment was on Monday, but I ended up just having an examination as they had no ultrasound appointments. Two weeks of anxiety, only to leave none the wiser. My partner (we don't live together) wangled me onto his health insurance a couple of years ago, so I had a private consultation on Thursday, and had an ultrasound , mammogram and biopsy. He said he is 60-70% sure it's cancer. I have an MRI booked for next Thursday, and he (Mr K, lovely man) is hoping he'll have biopsy results by Wednesday, in which case I'll have an appointment with him on Wednesday evening.

I'm not one to meet trouble halfway, but this time I've not just met trouble, I've picked trouble up, chauffered it home and made it all comfy in my spare room. I'm wide awake in the early hours, Not Googling with all of my might. Finding it hard to be 'normal' but craving normality so much. I went into work yesterday, after being awake since 2.30 am, but admitted defeat at about 3 pm and went to speak to the main man (I work with priests, our office structure is hard for people to get their heads round!), who was wonderful, told me to go home, he was so kind I struggled not to cry. Priests are good at this shit. And they'll be prayers and candles for me, and I'll take all of that (am agnostic).

Sorry, clearly not sleeping has resulted in verbal diarrhoea 🙁

@Littlecaf i started chemotherapy in May 23. Within days my scalp was tender and hair started to fall. I had decided against trying cold capping for a range of reasons. A v kind friend did a buzz cut for me a week after my first treatment.

I didn’t get on with wigs, in part because my scalp was so tender. I had a lot of inexpensive cotton caps bought from Amazon, and several cashmere beanies. It was surprising how cold my head felt!

10 months after finishing chemotherapy now, and like @Penguinsa not enjoying chemo curls much, but I have hair and am slowly, steadily recovering physically and emotionally.

Hair loss is a bugger, we all have to find our own way through it, no one right answer. It’s tough. I’m sorry you are having to face it

@somewhereonthe517 I got a ‘prescription’ which covered some of the cost, and a short list of local suppliers from oncology unit. I decided to buy a second one so I had a choice, but ended up not wearing them

@BatshitCrazyWoman You belong. I’m sorry about that.

You will read it many times on here. This is probably the worst bit, waiting for diagnosis and treatment plan.

Unsurprising that Trouble has settled itself into your guest room. Say hello, but suggest that it’s a thoughtful guest, knows when to shut the F* up, and when to leave

A bit of judicious googling, MacMillan, NHS is ok

A piece of advice I’ve always hated is one step at a time. I tried to follow it, and it helped

Tough times. Be kind to yourself. Ask for and accept help.

Thank you, @GrannyGoggles

Gosh the waiting is shit 😔

@BatshitCrazyWoman that’s awful. I waited 25 days between gp and breast clinic which I thought was an awful wait but to get there be told they still can’t help you, I just can’t imagine.

interesting to hear about cold capping. I’m starting chemo (ec-t 6 cycles 3 weeks apart) on Friday and will be trying it. It’s upsetting in a way that I might get 3/4 cycles in then find out it doesn’t work anyway. I kind of hoped I’d know either way after the first one as it sounds unpleasant so to do it repeatedly and then find it doesn’t work… I’ve not cut my hair short. I feel like I object a bit to paying for hair to look nice that might just fall out imminently but oncologist did make a comment about long hair being more distressing if it falls out. ’ve tried to buy some head coverings pre emptively so I’ve got something when I need it. I’ve got two and I have the urge to buy more because I feel like they don’t look right but I’m not sure the right one exists and what’s the point of cold capping if I don’t think it has a chance? I’ve also researched a wig shop so I know where to go if I need it. There might be one linked to your hospital.

I’m just wondering if anyone has any advice on things to get in before chemo. I’m doing a big shop later today and was thinking of buying lots of tasty food so that if I don’t feel like eating I’m more tempted but maybe that’s a waste of money if everything tastes like shit and I may as well eat plain but healthy ?

Welcome Batshit Good job you have private coverage though normally once diagnosed NHS gets faster.

Wigs I didn't use, but some hospitals give vouchers, not my area, but worth asking a breast care nurse if they do and maybe they can recommend local places. Some people don't get on with them so would be cautious about the ones which are extremely expensive.

Food in chemo is difficult to predict and will vary person to person and day to day. I took an ice box to my chemos, as doing a taxol, which are bad for neuropathy and lots of ice things including ice lollies and kept my taste and no mouth ulcers, maybe coincidence but ice lollies were nice anyway. I found eating little and often best and so had smaller things more often and also things high in iron I needed when weak. Fairly normal diet other than that. I would go for easy things. You are very restricted on vitamins allowed to take so a diet which gives them is ideal but it's more about getting through chemo really.

Would always recommend pre chemo going to dentist and getting any work that needs doing done and also mine gave me prescription high fluoride toothpaste and teeth got through OK. Treatment is harsh on teeth. Had to go private here but the dentist charged me very little considering.

And drink lots in chemo especially pre chemo day and if hot.

@aodirjjd hi - sorry you’re going through this too. I think that chemo side effects differ between everyone - I didn’t realise that my taste would completely go - and it’s been horrible - but it didn’t go for about 3 days after chemo so this cycle I’ve mainlined vegetables to get something healthy in me before the weeks worth of bland basic food starts. I really couldn’t stomach much in the last cycle!

I had shoulder length hair pre chemo and now I have a short bob - its coming out quite quickly and is annoying - I wasn’t pleased at the time when I cut it to a bob but it’s much easier to handle picking handfuls of hair out the shower/hairbrush off my clothes than long hair.

Personally I just wanted an options plan for my hair rather than a firm solution. Hair cut, try the cold cap, Chemo Headwear (Google) (bamboo coverings) as a start, and maybe a wig later. I’ve got at appointment at Trendco Aderens (Google). I think they have shops in a few different places. MacMillan helpline might be able to help you out too? Also ask oncologist. If none of this works then I’ll be bald for a bit. Winter is coming so nice bobble hats etc. Trial and error.

My SIL used this company too https://www.danielfieldclinic.co.uk/products

Sending good vibes.

@Penguinsa thank you. I ticked of the dentist yesterday. I almost didn’t bother because I only spotted it in a leaflet about two weeks before chemo and I didn’t think they’d squeeze me in but then 10 days before start date oncologist told me I needed to go or they wouldn’t sign off on biophswhatsit which they are planning to start during chemo . So that was annoying . Why couldn’t cancer nurse mention that alongside covid vaccine back in may when chemo was first mentioned and I had loads of time? Anyway I’ve got two fillings and prescription toothpaste. NHS dentist really came out top for me there squeezing me for both appt and subsequent fillings at short notice.

i will go to shops later today and buy myself some treat food for this week and chuck in some ice cream /ice lollies so I have in if my mouth is sore. I normally love dry fruit and nuts so they will be good snacks for this. My letter says to bring snacks with me to chemo appt as I might be hanging around a while but surely no one is hungry during?

I was surprisingly peckish during chemotherapy treatments. Custard creams were provided and gratefully received. Took oatcakes along too

Our chemo had food and drink it in though if you weren't there at lunch you needed to ask but there were lots of sandwiches, biscuits, tea, coffee, water. I never took own food but some people did. I did eat a bit and drink a lot before to make chemo easier though mine was weekly so shorter length.

Take food to your chemo. Small snacks you can eat easily, it can be a long wait depending on what you are having. Best of luck!

@aodirjjd the nicest things I treated myself to before chemo started were a silk pillowcase for my sore scalp, and bottles of Robinson’s cordial like Elderflower or pear flavour.
Be careful with food you like, I completely went off ginger as I associated it with feeling sick after chemo. The steroids they give you make you ravenous and a bit manic but it’s like a bad hangover.
I went to the hospital cafe on my way up to the chemo unit and bought a really nice coffee and luscious bit of cake each time. Needless to say I finished treatment 10kg heavier than I started 😂
I would say taking it a day at a time, sometimes just hour by hour, really helps get through the tough bits. Chemo is hard, but doable. I had EC-T and Herceptin three-weekly x6 with my first triple positive BC and got a complete pathological response. Second time round I had EC-T two weekly x8 (which was harder) for my triple negative BC. That just left a 3mm residual blob of active cancer in the lump they removed so they gave me 8 x 3weeks oral chemo “just to be sure”.
Amazingly I have had very little long term damage and I am getting fitter and stronger again as time goes by. I have slightly numb toes and manky nails and a deaf left ear but everything else is fine.

@BatshitCrazyWoman welcome. You will fit in fine here. It’s mostly shit with occasional good bits which you have to treasure when they happen! You are more patient than me, I get enraged when people say they will pray for me. I’m with Stephen Fry who argued that a God who allowed bone cancer in children was not worthy of his respect. But each to their own and if it helps some then let them get on with it.

I’m typing this in a camper van in Canada after crossing the Rocky Mountains. It’s hard to believe that I managed 22 rounds of chemo and 18 of immunotherapy and am now enjoying life again.

I dont know if I should be joining this group yet but have read the thread and feel strangly comforted knowing so many lovely ladies are being so supportive to each other. I had a recall letter 5 weeks after a mammogram last week and have an appointment at the breast clinic on Friday. I know the statistics say I'm likely to be ok but I just have a bad feeling I'm going to be in the 25%. I have no symptoms but that doesn't mean anything. Just reading these posts makes me feel less alone seeing how positive you ladies are is helpful

@Everythingtastesbetterwithcheese I've barely arrived here myself, but wanted to offer you an empathetic squeeze - waiting is hell. I hope your breast clinic appointment goes well and you get some answers.

@aodirjjd

I finished chemo two weeks ago. Did EC and then weekly pax and carb.

I cold capped and have kept my hair.