Mum starting chemo - anxious about time…

[lg1206]

Hello all

My mum was diagnosed with Invasive Carcinoma (No Special Type) Grade 3, ER negative, PR negative, HER2 positive on 26th August after finding a lump on 24th July.

We saw an oncologist last Thursday who explained my mum will start off with chemo and targeted therapy first… Pertuzumab, trastuzumab and docetaxel. She will need 4 rounds of this and then will have to have a lumpectomy and possibly 3 rounds of EC chemo and then radiotherapy.

My mum is anxious as her first round of chemo is booked in for 25th September. She is worried that waiting that long is just allowing the cancer to grow and it’s already fast growing. At present it’s 2/3cm and isn’t in any of her lymph nodes but she’s worried all the waiting is going to allow it to spread. I’m trying to reassure her but I am also worried that it might be the case!

After the chemo will she be put on a waiting list for her operation or will it be soon after the last round of chemo?

Has anyone got any tips for how I can help my mum through the first round of chemo? I obviously won’t be allowed in with her which I think is also making her anxious.

She is going to try the cold cap - any success stories or is it just hit and miss?

Any must haves I can buy her which will help?

Thanks so much!

[sisters_of_percy]

Hiya

Im so sorry for you and your dear mum.

This waiting period between discovery, diagnosis and treatment is the worst and your brain fills gaps as you wait. You’ve done the right thing reaching out on here.

With regard to hints and tips:

Firstly, I’d get your mum to contact the Someone Like Me team at Breast Cancer Now. They match you with a buddy who has had the same type of cancer as you, but is in recovery. Mine has been an angel over the past few weeks. It will help her talking to people who have been through this. I honestly cannot recommend this enough.

Chemo itself isn’t fun, however the teams are wonderful and she will get great care. I’ve found that all my appointments are fine. I take a book and a puzzle book and some boiled sweets and they bring round tea and toast and I find talking to the other patients makes the time go by. Or if shes quiet, its fine as well. Ask if you can sit with her for her first one. Worth a shot.

Make sure she drinks tons of water/fluids, you want to get her to flush that chemo through. 2-3 litres a day, I had a day were i forgot and boy did I know it.

Log every side effect she gets and report to her oncologist as they want to cure your mum but they dont want her to suffer and often doses can be tweaked to make life easier.

The taxanes (paclitaxel and docletaxel) can cause neuropathy in hands and feet, im wearing cold gloves and socks during this infusion and think its helping, im on infusion 8 of 12 paclitaxel. You can get them on amazon. I can link you if you like.

I’d recommend getting polybalm for nail health and using a nice thick hand cream to keep those healthy and strong as lifted nails can be painful and difficult. Polybalm is expensive but it lasts a long time.

You may find her tastes change a bit as it can temporarily make your mouth a bit weird. This is going to be a bit of trial and error on finding what she might like to eat and drink. You will absolutely find something, but just need to experiment. Its temporary though and it changes throughout the cycles and she will have periods where things are “normal”. Just make sure she eats as her body will need the fuel. I’m trying to focus on getting as many vitamins and nutrients in, plus protein. I did tons of home made chicken noodle soup with my own bone broth for the freezer, im having green smoothies with frozen spinach, pineapple and soy milk with flax as my mouth likes cold stuff and pineapple works for me, lots of eggs as they are quick and easy. You’ll find stuff between you that works.

I walk everyday, I listen to the birds and I get some vitamin d. Its the thing that’s keeping me going.

This is just one chapter for your dear mum. Its a bit of a rough one, but just keep turning the pages together. All these things like the taste, are temporary.

You’ll both get through this. You absolutely will.

Lots of love xx

[mrsjelly]

Hi @lg1206

Me again! I started chemo 57 days after my diagnosis. So whilst you Mum may feel it’s not soon enough, others I’m sure will testify that your Mums is happening quickly.

I had 6 cycles of Docetaxol, Carboplation, Trastuzumab and Pertuzumab. My surgeons aim was to operate 4-6 weeks after the last chemo cycle. It was 6 weeks exactly. I had Trastuzumab 3 weeks before my operation and resumed it 3 weeks later.

I didn’t bother cold capping. One nurse said it may help reduce hair loss, another more experienced nurse said that with Docetaxol I would likely lose it. I can’t bear the cold, didn’t want a longer stay in the chemo suite and to be honest, wasn’t fussed about my hair. I escaped neuropathy.

I did my first chemo by myself. Sent husband home as sadly his best friend had died unexpectedly the day before. My next chemo coincided with the funeral so my sister-in-law accompanied me. I did the next 4 by myself and the 12 trastuzumab. I preferred to do this, felt no pressure to film the silences and I rather liked observing what was happening around me or just switching off. I took my iPad and things to read but didn’t bother with either.

I didn’t eat healthily post cycle, I craved bland beige. White bread, rice, Farleys rusks, rice, chips, pudding, semolina, vanilla complan. And cheese on toast. Didn’t beat myself up about it. To me the most important thing was eating something when everting tasted of nothing and had the texture of an eggbox!

I did get chemo acne so was prescribed Cetraben lotion to wash with. It lasted about 8 months I’ve continued to use it since. My skin is the softest, smoothest and loveliest it’s been for decades. It’s the best £12 I spend in Superdrug (it’s with the medicines not skincare).

Stock up on unctuous Anusol with hydrocortisone for possible lava bum and vaseline for the dry nose. When my nails split I used a blob of superglue, let it dry and smoothed it with an emery board. x

[lg1206]

Hello @sisters_of_percy

Thanks so much for taking the time to reply to me. I really appreciate you taking the time to help me

Thank you for your recommendation of mum contacting the someone like me team. I think that’s a great idea and I will definitely let my mum know about it. I’ve only just had my first baby 6 weeks ago so I feel like my mum is trying to shelter me from all her worries as she thinks I already have enough on my plate. When really I’m doing everything I can to clue myself up on how I can help her. I think getting paired up with someone who has been in the same position as her will help her for sure as she will be able to ask them questions or air any worries that she doesn’t want to share with me.

I am going to make sure she had a few things to do whilst she’s at chemo and I’m sure like you she will be chatting away to the other patients as well! I’m hoping they might let me in as it’s her first one although on the phone they told mum she wouldn’t be allowed anyone in there with her due to people’s immune systems which I do understand. Although I know mum would feel much better if I was allowed to be by her side as you know chemo is daunting.

We were told at mums oncology appointment that it could cause neuropathy… please could you send me the Amazon link? That would be amazing. Definitely worth a try I think I’ll also order Polybalm thanks for your recommendation!

Hoping the baby will help give mum some extra motivation and maybe we can go on some walks together, as I also feel like sometimes a bit of fresh air can do wonders

Going to take each day and each stage as it comes but I’m sure you know some days are easier than others

Thanks for your lovely message. Sending lots of love to you as well - all the best Xxxx

[sisters_of_percy]

You’re most welcome. I will PM you some links now xxx

[lg1206]

Hello again @mrsjelly

Thanks for coming back to me again! I really do appreciate you taking the time to write back to me.

Oh really! I didn’t realise that could be the case - thought my mums wait was long but seems like I’m wrong!

Thanks for your advice about the cold cap. I did read up about Docetaxol causing more hair loss than other types of chemo. Think my mum will still end up giving it a try - just hope she doesn’t punish herself by trying to keep it on even if it’s too painful! I know what she’s like and she’s really upset about the thought of losing her hair which I can understand. Also understand you not wanting to be in there longer than you had to be though!

Sorry to hear about your husbands best friend. Why does it always feel like everything seems to happen all at once?! Good to hear they let your sister in law attend one with you - I hope they let me sit in with my mum.. I think even one session would help ease some nerves she has. I understand sometimes it being better to be on your own also though I feel like I would be the same.. how long did it take for you per cycle? I think they told mum it would be around 4 hours maybe more!

I make you right.. going through this is hard enough so eating anything you can manage is a good thing. I will be telling my mum the same. They seem to push healthy eating but I imagine that isn’t always easy bearing in mind the circumstances.

Thanks so much for all the recommendations! I will make sure I stock up on anything that might be of use!

To be honest I still can’t believe this is even happening. To look at my mum now and think she’s got this horrible disease within her is crazy to me. She looks completely normal and you’d never know looking at her… oh how I wish so much that that was the case for her and for all of you lovely lot on here!

Thanks so much for your reply again. Means a lot to me xx