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.

Sorry to hear about your diagnosis.
I had 2 different types of chemo, I felt ok with both of them, take all the anti sickness drugs, make sure you drink plenty and if you can get out and about, fresh air is great!

I tried the cold cap and tolerated it, it is very very cold but it didn’t completely work so I did get my DH to shave my hair off, I was ready for it at the time. It’s grown back great.

In regards to work and family life, let work know asap and let them deal with logistics. Everyone is different, but you’ll end up having lots of appointments for scans and meetings as well as the chemo, so if you don’t have to think about work I’d say that’s a good thing.

I’d also look at where you’ll get some support for your mum, I had two young kids and managed to get lovely friends to sort them on chemo days, took them to their after school clubs and fed them, again so I didn’t have to worry about them while having treatment.

I had 6 doses of chemo, three weeks apart. For the first week after a chemo session, I was tired and sicky but I was fine for the following two weeks.
Over the 18 week cycle, the tiredness got worse.
I did have a very strong dose though. Your oncologist will tailor the combination of meds exactly for you so each chemo journey is different.

Hi sorry to hear of your diagnosis. I would just add to the previous posters that I found the cold cap was very cold for the first 15 mins then eased so if you can get through those first minutes you’ll be fine. 💐

Sorry to hear about your diagnosis. It was about 2 weeks after the first chemotherapy treatment that my hair fell out.

Sorry to hear about your diagnosis. I know what a huge shock it is. I'm having intensive chemo for leukaemia. In my first cycle I was given chemo drugs several times a day for eleven days. I was very sick (frequent vomiting) within a couple of days but with subsequent cycles the sickness was better controlled.

I think the experience is very individual and for people who have solid tumours (as opposed to blood cancer) the chemo is less intensive. I've got a friend, with a different form of cancer who's having chemo every three weeks and the main impact on them has been tiredness and they haven't lost their hair.

One of the challenges with trying to get on with normal life is the frequency of hospital appointments and not quite knowing when they'll be. You need to be prepared to change plans. I've been on sick leave from work and wouldn't have been able to work around the treatment. Parly due to the chemo side effects but mainly because I've spent a lot of time in hospital.

With regard to my own hair loss, it fell out three weeks after starting chemo but not everyone loses theirs. It depends on your treatment plan. My medical team were very clear from the start that mine would fall out, your experience might be different.

You're right to just focus on the part of the treatment immediately in front of you. All you can do is take it one day at a time and don't google - there are some scary stories out there. Just get information from your own medical team and cancer charities.

Same regime as @JaneExoticand same experience. Tired and a bit nauseous tge first week but fine tge next two weeks. In fact tge third week I was bursting with energy which made it difficult to go and get the next chemo dose. I didn’t bother with cold cap. You have to wet your hair first and then sit there with a freezing cold cap on which can cause headaches. It made the whole process on the day much longer too. I wasn’t overly impressed with the results on a lot of women either. Their hair still thinned and often it wouldn’t preserve the hair all over so the woman would end up with bald patches. I remember one lady with a big thick frying at the front and what looked like a tonsure at the back. I had a wig which I was fine with but actually liked wearing lovely scarves and tying them in different configurations. Very comfortable and can look very stylish. You start losing your hair after the first cycle so likely you’ll need a wig/scarf (if that’s your choice) by the second.

fringe not frying

Thanks Jane, sounds like a bit of a see-saw business, swinging one way and then the next.

When you say tired, do you mean like wiped out , went to bed earlier than normal or could barely stand getting out of bed ?
Hope you are well now :)

Thanks very much for this. That's helpful.

Can I ask where the wig came from? and how you know what style/ colour etc ? I think the nurse that we saw after the doctor did mention it but nothing was sinking in after being told it was cancer.

Thanks to everyone who is answering..I really appreciate it.

My employers will be understanding I think. I'm a bit of a workaholic but I imagine that could change when in the middle of all this. And how can anyone even if their side effects aren't too bad, how would you say you:ll try and get in for one week out of the three before the next round of chemo? I can't imagine that..

Weirdly I've got to almost 60 without knowing many people who've had cancer ( besides my dad who died of lung cancer). I seem to know nothing about the way it's treated, how long for and how it makes you feel..

Sorry to hear about your diagnosis. Depending on the chemo - you may feel fine one day and then very poorly the next day. Everyone reacts differently to their treatment regime. I had a regime which was three weeks apart but I did find that effects of chemo can cumulative as in effects were harder to overcome in between. But it is all doable.
The cold cap will add to the time each treatment takes but although very good does not mean you won't lose any hair. It will thin out but I got around that with strategic combing but can give you further info privately if wanted. Don't assume you will feel poorly some of the girls in the group that I belong to sailed through it all while another one was hospitalised - we are all different. We all still meet up nearly every other month and have done for 10 years now so if you can get involved with a support network that will help you loads too.
If you are offered a PICC line take it - it makes life so much easier for treatments and taking bloods. You should be offered a wig prescription and the BC unit will have info on that - you can have a wig very similar to your normal hairstyle so you can feel more comfortable.
It really is a case of dealing with each thing as it happens - if you need anti sickness meds you'll be given them - if you need other things make friends with your GPs staff - they were fantastic with me and often took messages for the GP to write a prescription so no hanging around for an appointment.

Tired as in - ‘I want to lay on the settee all day and binge Netflix’ but was able to get the basics sorted.
By dose 4, I probably did need a day or two on the settee.
First chemo session I was as sick as a dog but they tailor your meds for you to combat this. Anti-sickness drugs made me sick so I got suppositories which were brilliant for me.

stock pile your freezer in advance of chemo. I had a horrid metallic taste in my mouth and was advised to keep very cold fizzy drinks/sparkling water and ice lollies in the house. They worked well.

I was told I’d lose my hair and that happened quite quickly but I didn’t really care about that tbh. Didn’t wear a wig, and either went out bald or with a hat/bandana.

I didn’t work, as I work in a school. Chemo compromises your immune system - I remember almost being hospitalised when I caught a cold towards the end of treatment!

As others have said, your team will advise you every step of the way. I know our NHS is on its knees, but in my experience their breast cancer treatment is superb.

@JaneExotic thanks again. Tips on lollies and drinks sounds useful..Can I ask what kind of hat/s you wore please? Am going to spend some time looking at hats online as a distraction perhaps

I had 6 rounds of chemo & immunotherapy 3 weeks apart. I found the first few days after treatment the worst, like too tired to do anything tired but it got better after that.

Depending on the type of chemo you’re on you might have different effects. Best advice is to make sure you take all the anti sickness meds- they really do help and I wasn’t sick at all. Also make sure to eat regularly as that helps with the nausea. I made sure I had breakfast first thing before I did anything. Also even on your worst day try and drag yourself out for a walk and exercise where you can as it helps you feel better.

My hospital had a wig specialist who would visit so you could choose a wig from their selection. The cost was covered by the NHS. I chose very badly so never wore mine but some women looked quite stylish in theirs. I either went bald or wore a scarf. If your hospital has a Macmillan centre or similar they might have some scarves you can buy.

I tried the cold cap once and didn’t like the feeling or the extra hours it added to the day. But it might be worth a try. I met one woman who said she liked the feeling as she was always too hot so you never know.

It took a few weeks for my hair to go but some chemotherapy treatments are more likely than others to cause hair loss.

Wishing you all the best for your treatment. I remember the feeling of being scared before I started chemo but it’ll go quicker than you imagine and you’ll soon be out the other side.

@GrandmaMazur thanks your post is helpful and very kind. It's making me a bit teary..anyway I hope you are all totally recovered now. :)

It was summer so I just wore the kind of hats you see all over! Your head can get sunburnt more easily so I was just sensible. I didn’t give a toss about being bald though, so I didn’t give it too much thought.

I’m sorry to make you teary! It’s a lot to get your head round.

My hospital did a group session about chemotherapy before I started which I did find helpful. They should tell you about anything like this.

I am doing well thanks. I’m on tamoxifen which has its own joys but am very happy that I am cancer free 4 years on.

I used the cooling cap and tolerated it well. It preserved most of my hair. It is uncomfortable when it first starts the freezing process but once you’re through that, it was fine. Some people can’t tolerate it at all but you won’t know until you try. It was the very warm lockdown summer but I was still cold in the unit so took a blanket and woolly socks with me. Success depends a lot on the type of chemo too. So when you know what you’re having, ask to speak to the unit about it. Good luck.

The wig was provided by the hospital but it was The Christie in Manchester which is a specialist hospital but would imagine everywhere will have some sort of facility. I was given a voucher (for £100 I think) but you could add to it. You had a session with the wig lady trying on different wigs. I made a bit of a mistake really because having had short hair for most of my life decided I was going to try out new hair in a way of starting a ‘new chapter’ in my life. Or that was my thinking anyway trying to focus on positives rather than negatives.

Unfortunately I hated it as it just didn’t feel like ‘me’ at all. I hated all this hair around my face and ended up in tears for days. Then my lovely hairdresser suggested she cut and style it for me and I was much happier then. Most people actually said it didn’t look like a wig. They may have just been being kind but I really think it didn’t.

I struggled with losing my eyelashes and eyebrows more in the end up. They did provide make up sessions to show you how to create the image of eyelashes and you can actually buy eyebrow ‘wigs’ if you don’t want to draw them in. However it turns out eyelashes and eyebrows are there for more than aesthetic reasons (😂!) and they’re there to protect your eyes from infections. I had quite a few eye infections during my treatment but it was manageable.

Also a piece of advice from my oncologist re nails which can also fall off was to paint them a dark colour from the start of your treatment. I did just that and my nails were fine. It may look like I’m focussing a lot on aesthetics when the most important thing is managing the treatment and getting well but one of the hardest things was losing the control over my body. Being able to try and keep my identity by having some control over the way that I looked was a small victory. I also used to plan all the things I was going to do once I was well again which was also a positive motivator (including going to India and seeing the Taj Mahal which I did).:

@StudyinBluethanks. I completely get this. We all want to feel we've got some kind of control over our bodies. Thanks for the tip about nail varnish. About 6 months ago I somehow stopped nibbling my nails and they now look great, to my mind so I'll take your tip on board. Hope you are fully recovered now :)

I had weekly chemo. My oncologist said with 3 week one plan on 1 week feeling very bad, one week meh, one week ok, with weekly meh all the time. Will vary by person, keep a symptom diary by day and that will give a rough guide to future cycles. Any problems call your chemo team, they have solutions to most things. Take your temp on digital thermometer twice a day and call immediately if temp is out of range, ask your team. This stops the worst issues and you need to call immediately even if it's 2am.

Hair with 3 week ones often goes end of week 2, with weekly can be much later like week 9. Worth looking at cold cap. I wasn't allowed it as not enough staff but good for some.

I would get help in for your Mum. I also got a cleaner during chemo, once a month, and that was great. If you can take a nice day out once a month that really helps. I did puffins. Sorry you are going through this. I am 4 years out now and life is great again, apart from global events.

I got a prescription - “1 wig” and bought another one as a spare. I was advised not to work and had to avoid public places when immunity was at its lowest, and take my temperature every morning and evening.

I would second this x

I'm on my second cycle of chemo for bowel cancer, so will be different to your meds. however, I found that the first three or four days the symptoms were worse, but manageable, and the eased off somewhat. like a PP said, in my recovery week I was full of beans and felt like a fraud for having time off work, but I think that each cycle gets a little bit harder.
The tiredness for me was just moving a little slower and having a lie down in the afternoon. It was ok, but as I've said I've only had two cycles thus far.
Sending good vibes to you. It's a hideous time of our lives, but it WILL pass. x