My first chemo session today at 2pm , 12 hours from now and i just cant get to sleep . So many questions going round my head. Does it hurt, will i be sick, whats the cold cap like , will i lose my hair anyway.
As ive been diagnosed with her2+ i was told chemo first then operation then radiation. I am panicking in case it has spread because my ribs hurt all the time . Ive stopped googling now and joined this forum instead.
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@ade66 hello and welcome to the group no-one wants to join!
The first chemotherapy is scary because, as with the diagnosis etc it is fear of the unknown. I have found the chemotherapy nurses fantastic at explaining everything and answering questions. Everyone’s reaction to chemo is very individual so it’s difficult to generalise about what will happen but I can tell you my experience and what I have learned. I have had 3 treatments of EC, the last one yesterday, and in 3 weeks will start 3 of Docetaxel. I am also having chemo, surgery, radiotherapy because I have a large axillary lymph node which the surgeon wanted shrinking before surgery to reduce the risk of nerve damage and lymphoedema. I’m pleased to see that it has shrunk enormously after only 2 sessions, the breast lump not so much.
Anyway here are my words of wisdom.
Chemo - try and drink lots of fluids before the chemo, at home in the morning as yours is at 2pm, and throughout the treatment, a couple of litres if possible. Don’t forget to have a wee just before you’re connected to the cold cap and the drip. Wear comfy clothes and short sleeves so they can get to your arm for the drip.
They will give you antisickness tablets at the time and to take home. Take them as prescribed! I have had slight nausea and no vomiting. If you have problems then phone the emergency line or your breast nurse - don’t suffer in silence. I had heartburn and they gave me tablets which stopped it in 24 hours. I find I can’t eat in the morning as I feel queasy so have tea and an hour or so later a glass of milk with a banana whizzed up in it which seems to work! After 1pm anything goes down ok!
Putting the drip in is a little sore - a bit more painful that having blood taken.
The chemo going in shouldn’t hurt so tell them if it does.
I have had some lightheadedness in the first few days and extreme tiredness lasting a week or so, so you need to listen to you body and rest and nap if needed. After 10 -12 days I have been totally back to normal but could do stuff before that just with extra rests built in.
Cold cap - 50/50 chance of it working apparently. I estimate I have lost about 40% of my hair - almost none after the 1st time the loads after the second. A patch of almost bald on the crown and general thinning - I’ve always had very fine straight hair anyway. I can still cover it easily with a wide hairband. Make sure you have a covering, gauze sqaures or something on the skin on your forehead or it is really uncomfortable. The cap can be very very cold initially but if you can stick it out for 10 minutes or so that seems to go off. Take a cardy or blanket, they’ve given me a blanket, and warm socks as I find I get cold towards the end. If you have to walk to the car you may want to take a hat to wear as your hair won’t look the best covered in conditioner and half frozen 
The main issue I’ve had with it is the uncertainty of not knowing if it will work or not. For me that has added stress to the whole business but I am ploughing on as it is working. Cancer Hair Care has a good website and lots of youtube videos that are really informative.
I convinced myself that in the 3 weeks it took between the Surgeon’s and the Oncologist appointments that the cancer would have spread to every cell in my body 
They both said that it just won’t spread that fast. I also had a CT scan which showed no spread beyond the lymph node.
I’ll be thinking of you at 2pm. I hope it goes OK.
Love to you 
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@pat thank you for all this information. It’s nice to hear from somebody who is going through the same thing as me. I will take on board all your advice . You sound like a lovely person and i hope it all goes well for you too 
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Hello,
Just a little message wishing you well today! It really is the fear of the unknown with chemo. My only advice is to try and go into it hoping you won’t get a lot of side effects because please remember some people don’t and find chemo totally doable. Just listen to your body and take it one day at a time. I would also advise you write down all your side effects each day after your first cycle so that before your next cycle you can get any additional medication. Please don’t suffer in silence (I speak from experience 
) if a drug isn’t working ask if they can give you something else.
I can’t give any advice re cold capping. I didn’t go for it but know some people have had great results. I do know chemo usually works really well on HER 2 tumours I could actually feel my lump shrinking and becoming softer even before they did an ultrasound half way through to check.
This forum is great- we all understand pop on here at any time If you need. I’ve had chemo twice at the grand old age of 31 so any questions feel free to drop me a message!
Sending you best wishes
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@ade66 I hope it all went ok today. Have a good rest and take care of yourself. Don’t feel you have to be posting on here!
@pat it went really well tbf it wasnt half as scary as i eas expecting. The needke going in wasnt so bad fir the chemo but the injection into my thigh stung a bit. Looking forward to a nice sleep tonight now. Thank you
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@fhs92 thank you some great advice there . I chose not to go for the cold cap , ill go with hairloss flow bought loads of bandanas and will get a nice wig fir xmas parties.
@ade66 I’m glad it went well. You deserve a good sleep!! Not doing the cold cap will certainly remove one level of stress!!
So glad it went well!! Rest up and hopefully you will have minimal side effects. Don’t be afraid to contact your team if needed- hopefully you will have been given relevant contact details. Keep an eye on your temperature too. The injection in your leg is stingy! I find if the nurse warms it in their hands first it really helps!
Aw that will make your chemo sessions a bit easier- I don’t think I could have coped with the cold cap. Fair play to anyone who does!! There are some fab wigs out there if/when the time comes! Things have definitely improved wig wise from the first time I had chemo.
First chemo done 
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What is the injection in the leg? I don’t have that. I have 7 Filgrastim injections I give to myself at home but nothing at the hospital.
Its called phesco it used to be called herceptin
Oh ok thanks. I’m not having that. Hope you had a good night and that you feel ok today x
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Hi @ade66
Welcome to the forum.
You may also want to join other lovely people having chemo at the same time as you, it can be very supportive to share your experiences and side effects. This is the link for July 2024. Reading previous threads can also prepare you with what to expect.
There is so a thread for us HER2+, it started last December and is still ongoing as many have between 6-12 months of Herceptin or Phesgo (Herceptin and Perjeta).
www.lookgoodfeelbetter.co.uk do a hair/scalpcare course with Jasmin from www.cancerhaircare.co.uk which lots provide online and by phone.
I’ve now had 15/18 Herceptin injections, some sting more than others. The nurse that did the last one said it’s best to inject a little bit and then wait for the numbing from the local anaesthetic to kick in and then continue for 5 minutes. It was the least painful of them all. So many ask them to do this next time, it might work out less painful for you as well.
Hope this helps 
Thank you 
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Omg its been a week since my first chemo session and i must say i wasnt expecting that. The first 3 days afterwards i felt like superwoman 
full of hope and energy. I even did loads of housework , slept a good 8 hours each night. But then day 4 omg i felt like id been atruck diwn by a train, i had diarrhea (still have on day 8)my mouth feels like its been ripped to shreds inside and the tiredness is indescribable. Im tired, exhausted in fact but cant get to sleep cos as soon as i relax i need the toilet again. I usually go 2-3 times a day normally as i gave IBS but this is on another whole level. I cant eat cos im straight on the toilry, i cant sllep for fear of pooping myself and im finding it hsrd to drink because of my mouth. Yesterday i rang the helpline because i couldn’t take anymore and they said i was most probably constipated. WTAF the reason for this is because when you take the steriods it bungs you up and so you experience diarrhea but its actually the overfliw from not going the first 3 days when on steriods. She wanted me to take laxidos on top of immodium to get the balance right 
well ive taken immodium 3 times and im still 
. Also ive lost 7 pound in a week 
. Im praying that i will feel better tomorrow. I really didnt think it would be this bad
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@ade66 I’m so sorry you have had a hard time with your tummy. Being constipated makes no sense in my opinion. 
I had the same problems after my first EC and, in fact, ended up being admitted to hospital for 24 hours. I haven’t got IBS but last year had very similar symptoms following a colonoscopy and starting a new diabetes drug. I also became lactose intolerant 
Anyway, after the first EC I had severe
colic and really bad diarrhoea. Eventually what I found worked was basically not eating in the morning. When I got up I just had water and maybe a cup of tea. No food. Around midday, if all was well, I had a banana whizzed up in a blender with oat milk, then through the afternoon I found I could start to eat food. You can take up to 8 Loperamide per day, starting with 2, then take 1 more every time you have diarrhoea.
The tiredness is something else and I think you just have to accept that you will need days on the sofa/ in bed/ asleep after each treatment. Everyone seems to be tired
The mouth problems sound horrible. Please get hold of your doctors about all of it. Maybe contact the breast care nurse, or phone the chemotherapy unit, and see if she can get you to see someone, rather than go through the emergency line?
For my second and third EC I started the not eating thing from the 4th day and things were much better. I also used Buscopan and Loperamide as needed. I am day 7 after my 3rd treatment and have had a couple of mild colics and very slight diarrhoea once a day but nothing that’s been a problem.
I really hope you feel better tomorrow. Maybe take 2 Loperamide before you go to bed and hopefully you’ll get a bit of sleep 
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Thank you for this info. Ive just taken loperamide and buscopan to go to bed and I’ve just gargled with warm salt water, i just need some sleep 
ive always been a great sleeper and my friends tease me about it so to be thus unrested is terrible for me
I was hoping id start feeling better by now another 2 weeks today and itll be chemo day again
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I find it takes me 10 or 11 days to feel ok, though not totally normal, and then for the last week I feel fine, so you should get some ok time before the next one.
Also please do consider, if you can bear to, whether you may have become lactose intolerant as chemotherapy can cause lactose intolerance - of course it does 
It’s a pain but quite doable with effort in reading ingredients etc.
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Hope you had an ok night. Just another thought - may be an idea to take Loperamide half an hour or so before you eat to see if that helps xx
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Thank you. I did get some sleep then my bowels woke me up at 8 lol. I will take on board what you have said. Thanks for being there and i hope you are well too. Sorry fir spelling mistakes but im using my phone and the keyboard is tiny for my large digits 
xx
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