@mouse701 I can’t remember why I took an antihistamine in the first instance!! 
… I maybe read the advice from someone on the February thread … I remember having bone-ache with the very first injection, but nothing since ….. intense hot-flushes
early hours, but that’s the medical menopause and from what I’ve read, the Filgrastim too! Good luck @mouse701 
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@big, I’m going to try it to see if it helps. I spoke to my consultant about it today and she said she hadn’t heard of antihistamines helping with bone pain, but also didn’t say not to try. I’ll try anything once lol.
Thank you. 
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Hi all,i hope you dont mind me jumping on. im about to start this regime and I wondered how you had all found it so far? Am starting just in time for the school summer holidays, so dreading have two small kids in the mix if Im feeling terrible x
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Just wanted to say hi. I got diagnosed yesterday with triple negative. It’s all a bit of a blur at the moment with all the words used etc. Got oncology appointment next week to discuss plan. Might not be able to reply during work but didn’t want to lose the thread. Hope to talk more to you all soon x
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Hello, and sorry you’re a member of this rubbish gang too! Hope youre doing ok. Its a huge shock. It does get easier. Im in a much better place mentally than at my diagnosis 4 weeks ago xx
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Hi @wildthingsare@wildthingsare. Thanks for replying to this post. I am sorry you are also going through this.
Everyone has their own experience of the treatment, so I can only share what my experience has been so far.
I think the worst bit is the anticipation at the beginning, once you get familiar with the treatment, it will become routine.
At the beginning I was dreading the thought of being physically ill for 6 months with sickness etc, as I thought that’s what it was like but it hasn’t been like that at all.
I didn’t know what to expect on treatment days, but they are actually quite nice days. The nurses are lovely, and all you can do is relax in the big recliner while they do their stuff. The first thing they do is check your details, blood pressure and temperature. My BP is usually low so I drink a lot of water beforehand, and this help increase BP.
Are you having a picc line? All my meds are given via this. They flush it out first, and the flush can leave a sanitised taste in the mouth.. I actually quite like the taste, but many don’t so they pop in a boiled sweet or mint in just before. The pre meds can make you feel sleepy, it’s the antihistamines that do this. Personally, I love this bit. As soon as it’s administered, a calm come over me, and I start to doze, whilst still hearing everything around me. The first couple of times I had funny experiences and was talking Klingo with jazz hands 
. The full treatment takes about 5 hours, the short treatment about 2.5 hours. I take a packed lunch on the long ones, and some snacks and a large bottle of water.
I also take my appointment card, they write the next appointment in it each week, a pen, a rechargeable hand fan with a stand, (so I can put it on the table and have it on me hands free) some hand and face moisturiser, lip balm, cosy socks, a light blanket, a phone, earphones, and a puzzle book. A companion is usually allowed. They may get bored, especially if you are sleeping, so they may want to bring stuff themselves, or go for a walk.
The hospital I go to come around with tea, coffee, snacks and if you’re there lunchtime, sandwiches as well and there are water refill stations through the hospital. So it might be worth asking if your hospital has these.
The first week, I felt absolutely fine other than feeling a bit wired after steroids. I had to take the first 2 days. I only had these on my 3 weekly cycle of immunotherapy, carboplatin and paclitaxel. I didn’t have steroids at home with the weekly paclitaxel. So the first week I felt ok.
As the weeks go on, I definitely think your body gets more tired and there are days where I feel exhausted. The single treatment of paclitaxel is easier than the 3 treatments (immunotherapy, carboplatin and paclitaxel). When I get all 3, I feel tired, irritable and achy for a good few days after,this usually starts around Sunday, but I then start to feel more human and can do most normal stuff the rest of the week. Last week I went to a concert and school sports days 
.
So life can go on with some normality, you should see a pattern after a while. I have a couple of good days each week, and some days I feel great. I won’t sugar coat it though, there are also challenging days, but these don’t last forever and don’t forget, there is help avaliable via your medical team.
I feel for you going through this during the summer holidays. Do you have support with the children? It would be beneficial if you did have help on the days you need rest. The heatwave was a bit challenging, and there’s more coming, so having some fans, or air conditioning is very helpful.
I bought P20 kids factor 50 sun cream, as I burnt my nose, sat in the shade for 20 minutes! Skin is extra sensitive to UV rays, so sunscreen cream, UV protective hats are essential. I also bought a uv protective umbrella from Amazon, for about £18. It’s brilliant and really blocks out the sun. I highly recommend getting one. I felt like a prat at first, but I don’t care now. It protects me.
Side effects are different for everyone. I think the most important thing to remember is to look out for early signs of any side effects , and tell your cancer team straight away. They are really helpful in treating side effects and may give you medication.
I’ve had some side effects, but again, it’s been different to what I expected and there is help for them.
This is what I’ve had, but it’s different for everyone:
Fatigue - feeling tired and some days exhausted. This seems to get worse as the weeks go on. I’ve learnt not to nap too much in the day as a full night’s sleep helps a lot. Sometimes though you just need to nap! Do you have any help with the kids during the summer holidays so you can have time to rest when you need to? I find my mood can get low when I’m exhausted so I look for distraction (I’m sure kids help with this)
I started to do some crafts for my grandkids, and made things for them to keep me busy without too much strain, and it helped me feel close to them. There are some good you tube videos for ideas on what to make for kids. The grandies would come over and help. This helped me with my low mood and kept my mind focused on something else. I also journal every day, this helps me keep track of the treatment, side effects, my mood and general day to day stuff. I listen to uplifting audio books and watch TV for a bit of escapism. Walking in nature also helps. As does talking to lovely people on forums such as this one .
Nausea.. Not been a bit issue for me. I make sure I eat, even if I feel sick, and this usually stops it. They give you anti sickness meds to take at home if you need them.
Neuropathy - This week (week 10) I started to get pain in my hands and feet (neuropathy) so the Dr said she can reduce the paclitaxel dosage if needed. There are ice gel packs available to buy for the hands and feet (suzie pads is a brand name). It works like a cold cap for the hair, by cooling the nerve ends so the chemo isn’t as effective in the cold areas). I just bought used suzie pads on vinted and used them today. Anything is worth a try.
Hair loss seems to be the one that hits a bit harder. It’s a very personal experience and not everyone loses their hair. A cold cap should be offered. It’s exactly what is says, a cap placed on the head before the chemo is administered, and is taken off 45 minutes after chemo finishes. The gel in the iiner tubing freezes after it’s put on the head, and the cold narrows the nerve endings on the head, reducing the volume of chemo reaching the nerve endings. This works for many people, but didn’t for me. Even some who lose their hair continue with the cold cap as it’s supposed to help with hair regrowth, but I decided to stop it. If you want more details on this, let me know x
It’s worth checking if your hospital offers complimentary therapies. I have reflexology during treatment every fortnight and it’s amazing. It helps to stimulate nerve endings on the feet.
I have to take 3 gcsf injections at home each week. These are to stimulate bone marrow to produce more white blood cells to boost the immune system. The injections themselves aren’t bad and don’t hurt. The medication can sting if it’s cold, so I take it out of the fridge 30 minutes before taking them so they’re not so cold. I’ve also started to take them in the evening, and this has reduced the bone pain I initially felt.
My skin is getting dryer, so I use a mild moisturiser. I’ve been using Aveeon, but have just bought Moogoo. It’s more expensive, but it brilliant for really sensitive skin.
If you want more detail on anything, please let me know.
I wish you every success and for the treatment to be kind for you.
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Hi @fried_eggs
I’m sorry for your diagnosis and joining the TNBC gang!
It’s such a shock getting that diagnosis and some much info is thrown at you, but you are not alone. Sadly there are loads of us going through this, and the plus side of this experience, is you get to talk to and meet amazing people.
I agree with @wildthingsare@wildthingsare, after a few weeks emotions start s to settle down and practical mode seems to kick in to get prepared and ready for treatment.
The treatment can seem daunting at first. The Dr and cancer nurse have to tell you about the side effects which seem a bit overwhelming. But it’s nowhere near as bad as it sound as not everyone gets all side effects and there is medication and help to ease them if you do.
I remember thinking well this hospital is full and everyone in hear signed a consent form, and most of them looked fine.
Once you meet the oncologist, they will go through the treatment plan step by step. Don’t be afraid to ask questions. I made a list before I went as I’d often forget.
I asked things like:
What do I do if I get a side effect?
They should give you a contact list and a list of the side effects, what is considered moderate - severe and when to call for help if you need it.
You’ll need to have a thermometer at home to check your temperature, as this is one of the main things to keep an eye on. They will give you one if you haven’t got one.
Is this genetic?
There is a criteria for the gene test, it’s worth asking for it.
Is cold capping available and how does it work?
Could capping can help to prevent hair loss.
Do they offer vouchers for wigs if I lose my hair?
I had a £100 voucher for a decent wig.
Is complimentary therapy available?
Reflexology, aromatherapy, etc. I have fortnightly reflexology during treatment.
What difference can I expect between the 2 cycles.
So I can prepare for a different experience in the second leg.
What support is available to my family?
They offer family support via local charities such as Macmillen and Maggies.
It doesn’t take long to get your head around the treatment and once you know what to expect, it makes it a little less scary. Especially after you’ve had the first treatment.
Expect the emotions to come in waves. There are days I feel so energetic and looking forward to the future (as I’m going to make positive changes, new me etc) , then there are days where I don’t want to speak with anyone, everything gets on my nerves, and woe be tide anyone who cuts me up when I’m in the car..!
If there is anything I can help with, please just ask.
With love
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Thank you so much for replying. I read your reply to the previous poster too and they were both so informative and reassuring. Questions I hadn’t thought to ask. I bought a notebook today so I can start jotting down questions and info etc. There was only the one design there and it has a rainbow on the front which I thought was a nice reminder that good things come out of grey days.
I had my little cry about it last night which helped. It was my son’s 19th birthday today so I put all my worries aside for today and carried on as normal. I couldn’t tell him my news on his birthday, but that gave me chance to get things a bit straighter in my head anyway. I also want to tell my daughter at the same time. They said about testing for the genetic gene so I will have to tell her about that too.
I’m glad to hear that you’re putting a positive spin on the treatment days, as it were. It’s all the unknown to me at the moment. There’s so much to get my head around. I was given some information leaflets with phone numbers on etc, plus the nurse wrote down a summary of what the doctor said but I’ve left them in my bag for today, zipped up and hiding
I’ve just realised the time and doing a late night ramble after having woke up for a wee. The MRI or CT scan I had picked up that I had a thicker bladder wall than normal so they just want to check to see if it’s related. I said I sometimes feel like when I need to go, it’s quite an urge but then that passes enough so I can get there in time. I’m hoping it’s just an age thing. I’m 47 and had two kids so this stage of life, menopause looming, anything like that I wouldn’t question.
Rambling again, definitely going now. Think I’ll have another wee
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Hi @fried_eggs
Ooh getting up for several wees in the night and weird sleep patterns is something that I can relate to. I often do my journalling in the middle of the night, or a meditation, which helps to relax me.
I’m 55 and have a 36 year old daughter and 33 year old son, and 4 grandchildren, so I can relate to you trying to protect the kids… and the bloody menopause. As if our bodies haven’t been through enough!!
Having a good cry when you need it is a must. I cry all the time, it definitely helps.
It sounds like you’ve got this already. If you want to chat anytime, please don’t hesitate to get in touch. You’re not alone in going through this xxx
I’ve found this experience to be a very positive one in ways I never expected. People are mostly kind, and you see this more. It’s blown me away and helps on the rough days xx
I made my own chart so I can tick off the weeks as a visual. I used to do something similar with my kids as a countdown to holidays, but it help me to see the weeks getting ticked, as it can seem like an endless journey. The weeks do go by quickly though. Xx
I’ve attached a photo of my treatment plan so you can see what it looks like, I found it confusing at first, and of my homemade chart… don’t laugh at the childlike colours lol xxx
Are you having surgery after treatment? I did the same thing and made a list of questions for the surgeon. If you want these let me know.
Wishing you every success with your treatment, and your son a very happy 19th birthday
I love that the writing pad has a rainbow 
Sending love
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Thank you so much, all of this is incredibly useful! Luckily my parents are close by so will be doing a lot of childcare over the summer, and my husband has an understanding boss so hopefully ill get through it.
Can i ask, what are your worst days after treatment? Is it straight away or does the fatigue come on later? Is it hard to recover when youre on the weekly treatment?
Thanks again for your lovely message
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Haha will absolutely be making a chart like this, with a celebratory beer at the end
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I have only done one cycle which was on Monday and Thurs/ Friday have been the worst for fatigue. I think I tried to keep going where as last night I took myself off to bed at 8 and slept till ten this morning. I feel better than I have in weeks so I would say as hard as parents try to keep going do give in to it and sleep xx
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Thank you for your reply. I have a chart on my cupboard door in the kitchen of my weeks ahead which is colour coded to where I need to be and when. I work at a school so it’s nice to see when the next holidays are and cross off every day, so absolutely no judgement here on colour coding charts and marking them off 
Good to have a visual that you’re nearly half way through. They said I’ll need chemo first, and then I can’t remember what comes next but I know he said radiotherapy and a mastectomy are needed. I don’t have the biggest boobs anyway, hence the name 
so I might just go flat and save any more surgery but that’s a while down the line yet so will cross that bridge then.
Good to know as well I’m not the only one who is awake when we shouldn’t be
Xx
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I’m glad I could be of some use.
It’s great to hear you have a good support network. It’s so important x
I find the 3 weekly treatment, where I have immunotherapy, carboplatin and paclitaxel are the weeks where fatigue kicks in the most. For the first 2 days after treatment, I’m on steroids. My treatment days are Fridays. On the Friday I’m usually tired but feel ok. I quite like treatment days.
Saturdays are mixed., but mostly I feel ok, the steroids keep me on a bit of a high.
Sundays even though I’m still on steroids, I usually start to feel more tired. Sunday, Monday, and Tuesdays, I take the gscf injections to increase white blood cells. I’m finding I’m out of sorts, a bit irritable, and achy these days, mostly Mondays and Tuesdays. I feel a bit nauseous in the mornings, but this eases when I eat breakfast. I do take anti sickness meds if it lingers and this also seems to stop it. As the weeks go on, and the body gets more tired, I’ve had a couple of days where I just chilled in bed, but these haven’t been many. Even when I’m not feeling great, I can get up and about and do some stuff, but I get tired more quickly.
Each week is slightly different. The hot weather makes me feel more tired and irritable.
Wednesdays are mixed. Sometimes I feel good, other times I’m still tired but I can do more things.
Thursdays are usually good days and I have high energy
The weeks I have just paclitaxel are easier. I feel less tired but the routine is similar, I just don’t feel as exhausted. The injections seem to affect me with bone ache, which is why I’ve started to take them in the evenings, to hopefully sleep through the worst of it, and I take paracetamol if needed. I had one week where the bone pain was quite bad so I told the Dr and they gave me cocodamol, which I haven’t needed to take, and don’t really want to as they make you constipated, but they’re there if needed.
I hope that helps. Everyone is different so you may have a lot more better days that I have.
Last week I had the start of neuropathy, which is damage to nerve endings in the hand and feet. I bought some suzie pads, which are ice packs for the hands and feet and I used them for the first time Friday. The pain hasn’t been as bad this week. I use the foot ice packs if I start to feel pins and needles and tingling, and this is helping as well. I spoke with the reflexologist at the hospital, and she said those who use these from the beginning of treatment, don’t seem to get neuropathy at all, so it might be worth looking into it. You don’t need to use the brand suzie pads, ice gel packs inbetween 2 pairs of socks and gloves will do the same thing. You won’t feel silly wearing this stuff in the hospital. Everyone is in the same boat and it’s a friendly safe space.
I try to eat a really healthy diet to keep my kidney function good, which is important, and to keep the bowlels moving, which again is important. So I make a healthy smoothie each morning. Berries and red grapes are good for the kidneys, and plums for the bowels. I buy frozen fruit from lidl which last longer and is cheaper.
I also try to get enough protein, by eating natural yogurt (which goes into the smoothie or with a bowl of fruit). Or have an omelette for breakfast with tomatoes, onion and mushrooms.
I also eat chips and chocolate… got to have some treats 
.
I do find if I have a day where I just want to eat rubbish all day, this does make me feel worse, so I try to eat a healthy breakfast every day, and I make up a large bowl of salad to eat over a couple of days to snack on and to have with my dinner.
I hope this helps.
Good luck with your treatment. I hope it goes well for you xx
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Hi @fried_eggs
Great to hear we both like coloured charts
You’re right to look at one step at a time, it can be overwhelming looking at it all together.
Good luck with the treatment, and with talking with your kids. I’m sure they’ll be super supportive.
If there’s anything I can help with, don’t hesitate to ask.
Sending love
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Good advice.
Got to rest when your body needs it.
Good luck with the rest of your treatment.
Sending love
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