Never used a forum before so apologies if I have not posted in the right place or gone into too much detail!
I’m a 35 year old from the UK with a very supportive husband, 2 boys under the age of 7 and a cat!
Looking for some advice and hoping you can all help me instead of googling which I’ve been told is not the best way to find out information!
Firstly, let me detail out my journey.
I went to the hospital in Nov 24 with a lump, they sent me away for 3 months all they could see was calcifications. Fast forward 3 months (a week after the doctor told me the hospital said I had fatty tissue in my letter to them), I had my first biopsy.
I was diagnosed with high grade DCIS of 90mm and sent for an MRI scan which resulted in another two biopsies which confirmed the initial diagnosis.
I was offered a double mastectomy (left was risk reducing), which I had at the end of May 25 with immediate implant reconstruction.
Results from the surgery came back and the DCIS was actually only 48mm, but 2mm of invasive Grade 2 HER2+ ductal cancer was found. Lymph nodes were clear.
I’m now waiting for mid July to get here to start chemo - TC (4 rounds every 3 weeks) and Herceptin injections (every 3 weeks for a year). They have suggested I give a cold cap a try.
I have so many questions relating to chemo and cold cap and even if someone can help me answer some of these, it would be most appreciated. Here are just a few as this post would go on forever!
What things are recommended with cold capping? Any hints/tips/essentials that I need?
Will I be cold while using the cold cap?
Do you feel poorly when having the chemo session?
How do you feel between chemo sessions?
Has anyone experienced side effects with the injections?
Do I have to change anything in my diet whilst on chemo?
I’ve googled so much, I just don’t know what I need to do, or how to prepare and I’m helping joining this forum will help relieve some of my worries as I am very scared and feel like this journey is never ending!
Sorry you find yourself here, but good place to find out the information/advice you’ve asked for! Sounds like they caught it early which it’s good.
Was diagnosed last year aged 35 with HER2+ I had 8 cycles of chemo (4x EC and 4x docetaxel with phesgo) and cold capped throughout. At first I didn’t find it too bad as I had lots of hair, but I did lose a fair amount of hair and as it thinned I could feel the cold a bit more! I took paracetamol beforehand, some people wear a headband over the forehead where it sits to try to help too. Another lady on my unit used a self heating eye mask for some relief. Generally I only found the first 10-15 minutes to be really cold then you get used to it. This website has information about hair care and scalp cooling:
I didn’t feel unwell during the chemo sessions. The side effects usually started afterwards. My advice would be take your antisickness medications regularly even if you don’t feel sick. Everyone seems to be different in what side effects they get, but always let your team know as they can usually add / change medications to try to help. If you are having docetaxel I’d recommend ‘Suzzipad cold therapy gloves and sock’ which are like cold capping for your hands and feet to prevent nerve damage. It was a consultant at a different hospital that recommended them to me and none of the nurses in my unit had seen them before but I didn’t have any issues with my hands and feet. Also paint your nails a dark colour during your treatments, it’s meant to help prevent nail damage.
As I was having the phesgo (herceptin) alongside chemo I didn’t know what caused which side effect, but now I’m just on the phesgo it seems I get a bit of an altered taste with it but other than that not much. It does sting a bit when going into your leg - I take a little ice pack with me and put it on my leg during the injection which I think helps.
I haven’t changed my diet, I’m sure they’d say to eat a healthy balanced diet - but sometimes between the steroids and chemo etc I just wanted something tasty, cake etc and I wasn’t going to restrict myself try to drink lots of water as hydration helps. Things like ice lollies might be helpful in this weather if you’re not feeling like much but want some hydration and flavour.
Sorry that is a load of information thrown at you!! Hope it’s helpful and not overwhelming!!
There is a thread on here with lots of HER2+ ladies you should have a read/join in. I’ll copy the link here hopefully but if not it’s called ‘her2 and need some buddies’:
The nurses wet and condition it before putting it on. No one told me but apparently you should wait 48 hours before washing your hair after each session, not sure if that’s why I did lose a lot of hair or not. I did buy some expensive chemical free, scent free, fun free shampoo and conditioner but I don’t think I really needed to. I didn’t get any sensitivity on my scalp.
I spoke to the Hair Reborn charity afterwards and they recommended moisturising my scalp with an almond oil or similar but I never got round to it. Highly recommend them if you do end up losing some hair as they give advice about post chemo hair care etc
I just feel like I am completely in the dark about what’s going to happen, I’m sure once I start my treatment I will feel more in control, it’s the unknown I’m scared of x
No worries, I understand totally. I’ve always found the waiting parts the hardest mentally, and I think that’s normal. Like you said it’s unknown and you can’t really imagine going through it until you are.
I took my iPad to watch / listened to podcasts or music or tried to close my eyes to ‘relax’ during the chemo. Plus I took snacks. If you cold cap you’ll be there a bit longer. Oh and treat yourself to some good hand cream and lip balm!
Hello i was diagnosed in october 2024 with high grade dcis and idc triple positive, i had chemo first then a double mastectomy with diep reconstruction. I done 6 round of tchp.
I cold capped for all 6, it wasnt pleasant the first 15 mins but after that it was okay, i lost alot of hair on top of my head and top of my ears and at the nape. But it definitely helped my hair regrowth and it started growing back after chemo number 5.
I just used simple hair conditioniner at treatments. Washed it a few days before treatment and a few days after.
Make sure its tight to your head, im not aure if mine was fitted right at the start or if it was just the 1st dose done it.
Hello and welcome @anon55420842 sorry you find yourself here, but this forum is a great help! I am cold capping and have just done my 3rd chemo session. It’s not the nicest thing but so far so good with my hair! Although early days, I’m not saying too much, just keeping fingers crossed! You do get very cold, i would say take a blanket and wear joggers or similar, if they’re baggy you can roll up the leg for your phesgo injection too! Chemo itself isn’t too much bother, its a couple of days after for me the side effects kick in! I think regarding diet you’ll just find it’s what you can manage to eat on the bad days so try to eat the best you can, but my advice is not to worry too much, we all just need to get through it, however we can! Best wishes on your journey p.s if you cold cap make sure they fit the cap properly, don’t be afraid to question if it doesn’t feel right, they are busy so can try rush it but fitting is really important, wear a headband to cover your forehead, take paracetamol before (helps with headache) i use Simple conditioner, hope that helps
Welcome to the forum and the group nobody wants to join but you will be so well supported. I see a few of my fellow HER2+ buddies have given you some great information and support. The thread @sooz1 suggested is so popular and the Herceptin/Phesgo/kadcyla journey takes longer than some other treatments. If you look at this thread there are lots of helpful tips.
I cold capped very successfully on 12 weekly Paclitaxel, I did cut my hair into a pixie and had to small bald patches above my ears ( probably from trying to wear my glasses under the cold cap instead of on top) and some thinning. I took paracetamol 30 minutes before and did something to distract myself for the first 10 minutes. I didn’t feel cold as I was experiencing hot flushes but some people need a blanket. I washed my hair once a week after chemo and brushed daily.
This is Paxman’s own website, they are the main cold cap machine in the UK.
Also great workshops with a goody bag form some of them. Covers hair loss, hands and nails, clothes. Can be done face to face or online.
I didn’t feel unwell during chemo the side effects start a day or so later depending on your cycle weekly or 3 weekly will depend how long side effects last. Your team will prescribe drugs to help.
Herceptin injections tip, ask them to inject a little and wait 30 seconds to 1 minute for the local anaesthetic to kick in then inject slowly to minimise discomfort. It can sting.
Change of diet depends on your chemo, sometimes taste can be lost or you just don’t feel like eating. I was told to avoid raw or undercooked food, soft cheeses etc. check with your team.
Some BCN links that may be helpful
Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.
Ask Our Nurses: You can message our nurses here on the forum, or confidentially. Whatever you prefer.
Someone Like Me: Will match you with a trained volunteer who’s had a similar experience to you. They’ll be a phone call or email away to answer your questions, offer support, or simply listen. Call on 0800 138 6551 or contact our email volunteers
Younger Women Together: For people 45 and under. You can choose the support that suits you: online, one day or 2 day residential events. Find an event.
There is due to be a July chemo starters thread but can’t find it so I’ve contacted the moderators to find out when it will start. Many of us find it helpful to connect online with others going through chemo at the same time.
This is the link for June if you want to check it out.
Hi,
I have completed 5 rounds of doxcetaxel with carboplatin and phesgo. I have used the cold cap, my hair has thinned, but people who dont know me dont realise I am having chemotherapy and are surprised when I tell them. I find the first 15mins with the cold cap can be uncomfortable, I distract myself listening to music or a book on audiable. I find taking paracetamol 15mins before helps with the discomfort. I brought faith in nature unscented shampoo and conditioner and it seems to be working well. I watched the videos on the paxman cooling website and follow there tips, washing my hair only twice a week. Brushing twice a day with a detangling brush and I sleep with a silk pillowcase and use silk scrunchies to tie my hair back. The videos are really helpful in what to expect and for tips and tricks.
try to drink lots of water as hydration helps. Things like ice lollies might be helpful in this weather if you’re not feeling like much but want some hydration and flavour.