Diagnosed last week. Basic basic info re chemotherapy & hair

[Liz1tummypain]

Hi, I only had the breast cancer diagnosis on Thursday so not really enough time for everything to sink in. Have told work and two of my kids ( third is away up a mountain).

The doctor didn't give me an awful lot of info. It is the type of breast cancer that won't respond to tamixofen so the plan seems to be about 4 months chemo, then most likely surgery and then radio therapy. I'm not going to think about anything besides the chemo for now.

Please don't give me too much info. I'm just after some very basic info.

The oncologist will decide whether chemo will be every 3 weeks or a little more regular. How soon ( obviously everyone is different I'm sure), but how soon should I plan on it starting to feel bad?

Trying to think about my work, caring for my mother who has dementia and how would the chemo fit in. Just wondering when I will really need to get other people on board with my mum. Work will sort out a temp I imagine.

Please don't give me too many details. Just a rough idea of how soon it will be til I am losing my energy or whatever the main basic side-effects will be.

Also how soon til my hair would fall out? ( and how cold is the cold thing you can wear?). Not sure if I'm vain but my hair has always been something I felt good about. Hey-ho.

Once again, nothing too detailed please. They gave me lots of leaflets. I started one and had to put it down.

I had 6 doses of chemo FEC-T, every 3 weeks via picc line.
No sickness at all but wow fatigue hit me, I took 12 months off in total, from work. My hair started falling out 2 weeks after 1st chemo and by week 8 I was bald, and body hair all gone by week 12.
I still enjoyed food and my oncologist basically said eat what you like when you like.

I had mastectomy after chemo followed by radiotherapy.
You will do this but its a huge toll on your body, rest up.
Good luck and much love x

OP, do you live near a Maggie’s centre? Or perhaps reach out to MacMillan. Did the consultant give any indication of an oncology nurse being available to you? All these are good sources of support.

Thanks Squirrel. Can I ask what puffins are ?

Sending love. I have TNBC, wonder if that’s your diagnosis from what you said about tamoxifen

I think if you can get the cold cap comfortable on your head then yeah, it’s cold enough that your skin kind of goes to sleep. I used thin strips of memory foam to protect my forehead and ears, that made a massive difference.

I remember describing it as it feels like being outside in winter with wet hair, it’s not pleasant but I don’t think it should be painful. I was able to sleep through treatment with it on and some decent earplugs and eye mask. I did loose some hair in the end but it has grown back quickly.

I recommend a topper wig, have a look at https://youtube.com/@milanowigs?si=pKfi8OYY9FRkUceC you can get wigs like this on eBay second hand or new. I invested in a second hand, human hair one and got it covered, it’s stunning and much nicer than my own hair, people are shocked when they realise it’s not real

I remember sleeping for about a day and a half after each infusion, I was fine the first evening but the following day would feel very wiped out. If you can stay active during treatment I believe you will find it easier. McMillan are really good at supporting people through this., I was told on no uncertain terms that the NHS recommends a certain amount of exercise for everyone per week and that’s the same for those of us with cancer so got into doing weights and more cardio, felt great for it.

there is an unbelievable amount of support available, let people look after you. good luck good luck❤️

I had my first chemo on Dec 22 and my hair came out in handfuls on Jan 5th.

I went to a wig maker on Dec 16th so I was prepared . I wore my wig from Jan 5th to May 21st, by which time I had a cm of curly hair so I dumped the wig which I was very fed up with, it was too hot.

But I only had 4 doses of chemo, each three weeks apart.

Human hair grows at 3mm a week so it took 18 months for mine to grow back to full length.

@Nofksleft2give thanks, but I don't know anything about a Maggie's centre..Yes I'll ask them when I have the next appointment at the hospital..Cheers :)

Thanks Meadow and well done for thinking ahead. Wonder if I could do that. I feel bad for obsessing over the hair loss subject . Well there are other parts that are absorbing my concerns as well.

Thank you Drifting. It means a lot when people write such kind words, as you have..

I will certainly have a think about how to work on being active. I used to be very active til about ten years ago when I had a freaky heart thing. I did a special gym class for cardio patients but had to stop it when I changed jobs. But yes I'll think about what I can do to be more physically active.

And the link for wigs, that's great. I'm going to give that serious consideration. My hair's pretty long- below boob length and now I'm thinking of having it cut to a medium length bob if that means there's less hair that's sitting around cold down my neck for however many hours you wear the cap thing .

Thanks and much love to you too. :)

My mum was diagnosed with triple negative breast cancer (the sort hormone therapy doesn’t work on) on Christmas Eve.
She had been dreading this her whole life and once given the news was a complete wreck. Could not function.
Once the weekly chemo was underway she was like a different person. Everyone was amazing at the hospital, she’s done so well with the chemo. Can’t say she’s ever had to take herself to bed, no sickness, she still gets out walking and does her hobbies. Shes 68 but managed the cold cap for 8 sessions so far. Her hair has thinned a bit but she’s still got most of it.
She told me not to let her take it off for at least 15 mins on the first go so I sat with her and we set a timer. I gave her her crochet to do and talked to her non stop. If you can get through that first 15 mins she said it’s not so bad.
The only hiccup she has had was a stubborn UTI but a change of antibiotics has sorted that. Just had a scan and the tumour has shrunk by half and still 4 chemos to go. At the start you wonder how you’re going to manage but treatment has come such a long way.
Sending you well wishes, you can do this. Xx

@TheFormidableMrsC thanks for your post. would you think it would increase my chance of getting on with the cool cap thing if I were to have a fair amount cut off from the length at the moment. It's just about boob length or a smidge lower now.

Thanks Pink. Sorry about how your mum felt with the news about cancer and I:m glad that she's getting on ok with the chemo. Nice that she is able to keep doing her hobbies.

I'm going to give the cold cap thing a go. All the best to you and your mum x

I don’t think it would. The cooling cap freezes the roots. I was diagnosed 3 days before lockdown (so 6 years ago last Thursday). By the time my chemo came round (August 20 I think?), I had massive long hair. I had hair hanging out of the bottom of the cap but it didn’t make a difference. The process is as follows…nurse will cover your hair with conditioner and fit the cap. It adds around an hour to treatment time but for me it was worth it, I wanted to look “normal”. I had a very young autistic child at the time and he was my focus. I’m a lone parent too so wanted to try and keep everything “normal”. I didn’t touch my hair for two to three days after and it looked delightful as you can imagine! I washed gently, avoided products and just straightened my fringe. I lost a bit from the back and I felt when I was washing that I was losing loads but it still looked ok. I can’t tell you how impactful it was to not look like I had cancer. I am so grateful it worked for me and will always recommend it. The freezing process for me was mildly uncomfortable. I took two paracetamol before treatment. However as I said previously it was fine once the freeze was finished. You have absolutely nothing to lose by giving it a go. If it’s not for you, then that’s fine, but it might just be a boost you need. I hope that helps and I send you lots of love and positivity for the journey 💐

I will also add that I sailed chemo. I walked to and from the unit because the weather was beautiful, a six mile round trip. I didn’t have a single side effect. Exercise can mitigate a lot of them. I was given anti sickness meds but didn’t need them. I feel I was very lucky in that regard. My chemo was Paclitaxel. I am fully aware that this is not the same for everybody and that the cooling cap might not work with different drugs. Speak to your breast care nurse so that you can manage your expectations. It sounds as if you’re triple negative. I was HER2+ and I’m still on Tamoxifen.

@TheFormidableMrsC thanks so much for your other responses. I'm glad you didn't suffer too much with the chemo. I think I will definitely give the cap a go. I'm sure I could ask for it to be removed during the process if it feels painfully cold I suppose. You have obviously through such a lot, with needing to care for a young child whilst having this on your mind. I hope I have a small portion of your strength and bravery when it all rolls round. Thanks again :)

There are so many different kinds and combinations of chemotherapy that it’s difficult to predict any one person’s reaction.

I was very poorly throughout my four months of chemo. But others sail through it. My tips would be: headscarves, no strong smells in the house, tinned pears, Coca Cola. Also be mindful that you may feel not like yourself. This isn’t only in the physical sense but emotionally, even existentially. In my experience this ends when the chemo ends and you will feel ‘yourself’ again.

Wishing you the best possible outcome and a speedy recovery.

@Robogob Thank you for your message..I will take on board your tips.
Sorry that you had a bad time with your chemo. I suppose I should tell myself to concentrate on the light at the end of the tunnel if I also struggle with it.. Wishing you good health x

I had breast cancer 6 years ago with surgery, chemotherapy and radiotherapy.
As far as the hair was concerned I felt rather under pressure to care more than I did. Urged to just give the cap a go as though I was a failure for not wanting to add an extra difficulty on to chemo. When I explained things friends and family they were fine with it.
I had my hair cropped before I started and got two nice wigs. In the end I only wore them for going out somewhere special but they looked fine. Otherwise I bought dozens of hats online, no scarves which I associate with chemo.
I had weekly chemo which got harder as the weeks went on because there was no respite. The three weekly ones are supposed to be tougher but there's a window in each cycle of feeling better.
I wouldn't commit to working tbh.

Almost 10 years ago, I had TNBC. The cancer had spread to the lymph nodes, and I had what they called “double dose” chemotherapy - particularly nasty drugs every two weeks. I think I had 8 or 9 doses. I had an awful time due to nausea and fatigue. I could barely raise myself off the sofa for the first 10 days and was just feeling normal again when I was hit by the next dose.

I’m telling you this not to make you feel anxious, but rather to warn you that not everyone sails through it. One of the things that drove me mad was people telling me about others who had continued to work through chemo, who didn’t find it hard etc etc., which made me feel like I was being a complete wimp. I wasn’t helped by the fact that I looked really healthy - the chemo gave my face a rosy glow. Even when one planned dose had to be delayed as I was too ill to take it, my oncologist remarked on how well I looked.

My consultant told me that women who have had a hard time with nausea during pregnancy are more likely to suffer more with chemo. So it was with me, and hopefully not with you. But if you do have a tough time, let work and your friends and family know, ask for help and support, and don’t be embarrassed.

My consultant also told me to take a year off work, but I pushed myself to go back earlier, and I would advise you not to do this. I suffered quite a bit with brain fog which took time to dissipate, and so I was not really up to the job when I first went back. This caused untold damage to my confidence levels, which had already been battered by the diagnosis itself. Allow yourself time to heal and take stock of things before going back to work (obviously finances permitting).

I wish you all the best.

I had ovarian cancer but wrote the below for a friend who has breast cancer with some additional bits from a friend with breast cancer. She tried cold capping but fainted and has had to stop. Anyway, I hope something in the below helps.

Chemo tips

Before
You have to get a blood test the day before chemo (may be a couple of days depending on your protocol). If you get to book them yourself, book as far in advance as you can so you get time slot you want. Usually early to ensure chemo people have results by next day.

If hospital has parking, check if you get free parking (cancer patients do at lots of hospitals). Might as well get some benefit!

Wear trousers that have an elastic waist or a skirt - when you go to loo it’s quite hard to do jeans up one handed as you’ll have a drip in one arm. I always tried to wear cardigan and T-shirt as at least then if i got hot I could get cardigan half off.

To take
• Flask of tea! Well a large travel mug. You will get offered tea but it was never enough for me.
• Water - you need to drink as much water throughout whole chemo time to flush it through and remain hydrated!
• Eye mask in case you want to sleep
• Noise cancelling headphones
• iPad with stuff downloaded
• Kindle
• Something like this - https://www.amazon.co.uk/iBeani-Tablet-Cushion-Holder-Devices/dp/B07PRJXGJT I saw someone with one on my look around and got one and it’s been brilliant. The chairs usually recline so you can balance iPad as you are laid back.
• Charging block - not usually extra sockets so a block is best.
• Snacks! I used to stop at hospital M&S and get stuff.

What to expect
Chemo attacks fast growing cells so side effects happen where your normal cells are growing fast - stomach hence nausea, mouth - can get mouth ulcers, fingers and feet - these go sort of numb with pins and needles called neuropathy.

They will give you stuff to deal with most of these other than neuropathy. I used to get it mildly for a week but by end had it permanently in my feet. They actually reduced one of my chemo doses to try and alleviate it. They offered to stop it but I said I’d rather have neuropathy than cancer so crack on. I am having acupuncture and reflexology now for it which has reduced it massively and am hopeful it will go.

So, to reduce the side effects once they have a line in you they give you steroids, anti nausea and antihistamines. These will make you sleepy! It’s like having a few gin and tonics.

Chemo is literally just liquid in a bag that goes in your arm via a drip. Once needle is in you can’t really feel it other than it may be a bit cold. I sometimes took a snuggly fleece blanket but if not would usually get a blanket from the nurses. I do get much colder now! That reminds me, get some bedsocks. Your feet will get cold!

You may have a reaction to the chemo - bizarrely it’s normally on your second go. I suddenly felt as though someone had boiled me and hard to breathe. Staff will sort with steroids and antihistamines and then resume chemo slowly.

Chemo can impact your nails but apparently nail varnish can reduce risk so I had beautiful painted nails throughout! (It’s actually that chemo makes you sun sensitive and therefore sun on nails can make them split and peel).

Cold cap - a very tight hat put on hair after it’s been wet and which has tubes round it keeping it cold. I didn’t have it as I hate cold, didn’t really care about hair plus it would have added an hour or so to my chemo which was already 6 hours. Yours will be shorter though so you might want to give it a go - it’s not always successful and your hair might thin but you can always stop if you don’t like it!

Reaction
When you leave they will give you 2 or 3 days worth of steroids and some anti nausea pills. If you are lucky you’ll also get some laxative (chemo constipation is a thing). The thing they forgot to mention to me about the anti nausea pills is you can take them whenever you need to ie if you feel a bit sick. If they don’t work for you there are different ones they can prescribe.

But constipation - had it really badly first round and made me quite ill. Then I got prescribed laxido and I would just take it two times a day for 3 days after chemo (the steroid days). If you don’t get any laxido buy some and take a couple of doses chemo day and next two or three days BEFORE you have problems. This is probably most important tip!! (Steroids add to constipation and prevention is better than cure).

The steroids mean you are really good for the days you are taking them - so if you want to go to pub/out etc these are the days to do that. Then you’ll crash! I would take myself to bed about 1 but set alarm for 4.30 to get up so I could still sleep at night. Don’t try and fight the fatigue - just sleep! BUT if it gets overwhelming push them to check your thyroid- keri’s stopped working due to the chemo and they took a long time to check.

I’m afraid there can also be bone pain. Difficult to describe but you’ll know if you get it. Things that help - Claritin or a bath in Epsom salts (ideally both!).

Oh and chemo brain is a thing. Got v forgetful and couldn’t concentrate well.

I walked dogs everyday- usually twice. And this really really helped - even the bone pain. I felt much worse days I didn’t walk them. And there is evidence that exercise helps chemo and reduces risk of recurrence. Knowing what I know now, I wish I’d had acupuncture throughout, and reflexology! I do sleep through both of them! So if there is somewhere near you, do think about booking in. I wonder if it might have prevented my neuropathy.

Then you are back in to next round of blood tests, chemo etc.

You may not feel like eating some days - get some fattening ice lollies (magnums etc) and favourite snacks in. Some days that’s all I wanted to eat.Keri said all she could eat some days was Greek yoghurt and berries so get some of that as well.

Miracle cures - you would not believe some of the crap people send you. I’m on some OC groups on Facebook which I generally find helpful but Americans are mad with their sugars feeds cancer, go holistic etc. All bollocks. There have been some trials on fasting on chemo day and next few days (ie less than 1000 calories) and whilst this did impact nausea for some, there was no overall benefit. Anything people told me to do id run through AI and ask it to research and provide any evidence that whatever rubbish it was worked. Only thing ever with evidence is exercise!

Live your life
Some people get very worried about crowds, infections etc. I ignored all that and once I knew when my good days were I went to theatre, concerts, pub, restaurants etc. Highly recommend doing this otherwise you just are living for treatment.

So in summary - it’s not that bad but control symptoms like nausea and constipation before they get out of hand. Keep an eye on fatigue and if it’s unmanageable get your thyroid checked. But try and still have fun!

Speak to adult social services as your mother may need carers. We have them coming in to my mum to help with personal care and the earlier that gets in the system the better. Look up ‘Amanda the hair and now’ on Facebook. She tries a lot of budget friendly wigs and is really entertaining. Good luck with it all.

I still have quite debilitating neuropathy six years on from chemotherapy. I have permanent pins and needles from my knees down and can’t walk well anymore. Not a single medical professional prepared me for this. Not one mention. So it was a dreadful shock.

Thank you to the poster upthread for the acupuncture tip. I’ll look into that.

OP, I think it’s definitely worth asking your consultant about neuropathy. So that’s a tip I hadn’t thought of.
Sending you all good wishes.

Sorry to hear of your diagnosis @Liz1tummypain . Wishing you all the best while you go through treatment.
A quick one for me if you do go down the wig route or find thinning eyebrows etc - theres a gorgeous bald woman on Instagram (alopecia not chemo i think) called @ohmy.holly who has a fab wig collection but also does loads of tips about how to apply lashes, eyebrow transfers etc. She has some fun looks! Hoping you get on well with the cold cap but thought I'd send that as an option too x

When my hair grew back it was all curly! I have heard this can happen, but always having had pretty straight hair it was a surprise and fun to see it look so different - lovely ringlet curls, not frizzy. It didn't last though, after a few months it was growing as before which I am a little sad about. 🙁

Thanks @Confuserr . I've just today been given the date for first chemo session, which will be on Monday. I don't understand why it's been longer to come round than how the original doctor outlined it would be but hey-ho, these things must happen for a reason.. I'm glad I asked this question as I've had some very heart-warming responses, such as yours and it does make me feel better to read them and know that other people I've never met are wishing me well. It's making me well up a bit. I'll do as you suggest if I go down the wig route. We'll see. Thanks again x

@ZoeyBartlett thanks very much for your reply. When I first wrote the question I'd not long had the diagnosis and I couldn't face hearing too much about it, if that makes sense , but now I've got the date ( they told me today), now I'm ready to see all of this as now I want to get organised.

I remember having constipation when pregnant and one night I almost rang 999 with the pain so this is something I really want to avoid. I've not heard of laxido, but presumably you get it from any chemist over the counter? I want to take your advice here as constipation can be so bad.

Sorry got another question. You suggest Claritin if I get bone pain. Isn't claritin for hay fever? It seems a bit odd but if so, yes I'll stock up with that as well.

Last question please- I've read somewhere else that people like ice lollies, but I don't know why. Does your mouth feel hot?

Thanks so much for all your advice.x