August 2021 Chemo Starters

[ali 3.141592]

Hi folks,

I was diagnosed a month ago and due to start chemo this Wednesday the 11th with bloods getting taken tomorrow. One of my tumours is HER2+ So they seem to be throwing a lot at me to get it under control. I’m starting off on Docetaxol + Pertuzamab + Trastuzumab for 4 cycles the following that up with another 3 cycles of EC. If my math is right that’ll finish up the week before Christmas. 

After weeks of “looking forward” to starting treatment I’m suddenly a nervous wreck about how I’ll react to it and the gosrelin to stop my ovaries. I think it is just the final waiting anxiety. It was really comforting to discover this thread.

[SlightlyBewildered]

Hi Shi

Thank you so much for your advice. I called the hotline! Nurse was super helpful. She said likely peripheral neuropathy 😳 which is quite common. I don’t have it severely and she said to get a moisturiser with 2% menthol. I have found some on Amazon! 

I had been taking Nurofen but she said def not to whilst having chemo as it can cause tummy problems and also may cause bleeding! So paracetamol only. She also said to check my temp before I take said paracetamol. This being because it could lower my temp and I may then not realise if I have a high temperature. 

So much to take in 😩 I’m never usually poorly so this is a big learning curve. 

Feet and hands ok at present. 

Thank you again. This thread is amazing 💗💗💗

[Shi]

Sarah, do please check with your unit about itchy hands and feet, being on chemo can cause reactions that you just need to check with your team. If anyone gets burning wee you will need antibiotics from your team chemo has given quite a few of us a uti that required antibiotics. Anyone who gets thrush or thrush mouth from the chemo again ring your teams and get antibiotics not just some over the counter stuff, your teams will be pleased you are being vigilant and helping them get you safely through chemo ❤️ Step by step 👭❤️ Together you will get each other through, remember you are beautiful and amazing and 💪😘💕💕✨✨Shi xx

[SlightlyBewildered]

Hi Surreygirl

So lovely to hear from you. How are you doing?

It’s currently 0447hrs here and I’ve been awake since 0230😳 I’m usually a very good sleeper! 

Fri evening and all day yesterday I felt really quite fine. Was thinking this was going to be a breeze! I went to bed with itchy hands and feet and said hands n feet now feel like they are on fire 😩

I don’t feel sick though (yet) so that is a definite bonus for now. I have a couple of friends that have been through similar and they have said that side-effects for them kick in after they stop the steroids. For me that will be Tues morning.

I thought that any poorlyness would kick in pretty much straight away. I wasn’t expecting to have to wait around for it to arrive! It’s a very bizarre feeling not knowing if and when something is going to strike plus not knowing what exactly! 

I have my Mum here to look after me for a few days. I’m a single Mum with two teenage sons and didn’t want them to have to feel responsible for me if I’m quite poorly. They went off to their Dads yesterday whist I was still feeling fine. Currently they are under the opinion that cancer/chemo is a breeze! They’ve not seen me struggle yet. I’m really hoping I can keep it that way 🤞🏻

I have injections to start this evening. Initially I thought I’d be fine to do them. I’m now panicking slightly! Any advice would be greatly received 🙂

I’m sending you a huge, ridiculously early morning hug 🤗 Always here if you want to chat. I’m pretty sure this will be a bit of a bumpy few weeks. But … We can absolutely do this!

Loads of love  Sarah xxxx 

[surreygirl123]

Hi SlightlyBewildered,

My experience sounds very similar to yours, although I'm having 4 rounds fortnightly of EC, not TC, (then 12 weekly Taxol).  

I was there a similar time yesterday for my first session, I tried the cold cap, I thought it was manageable, like you I had a heat pad which helped. 🙂

I had a portacath fitted on Wednesday (they tried the week before, but in theatre had trouble so removed it), so that was a bit tender, but was so much better than all the bruises I have on my arms from the blood tests, cannulars, etc.

I didn't sleep that much last night.  About to do my injection pump, been putting that off for the last hour.

It nice to meet other people travelling the journey at the same time as me. 🙂

Big hugs to you all. ❤️

[SlightlyBewildered]

Hey All 

I had my first round this morning - well it kinda took all day! Was in at 10am and got home at 3.30pm. I only live 15 mins from hospital! 

I’m having x4 rounds of TC. With cold cap. 

I was dreading the cold cap but it wasn’t half as bad as I was expecting. I took two strong codeine painkillers beforehand though so I think that def helped me to get through the freeze (10/15minutes at start). It went on 30 mins before and had to stay on 90 mins after! 

If you’re gonna try one make sure it fits tightly. It has to be really close to your scalp. 

It may help keep my hair, it may not. But I wanted to give it a go. If not I’ll brave the shave and wear funky wraps n hats for as long as needed! 

I took loads of warm clothes. Didn’t need my scarf, gloves or extra cardy and socks! I did use a heat pad on my lap though - hospital provided that. I also took hot chocolate in a flask and that was lush! 

Nurses were amazing. As always! Have been sent home with various drugs. Steroids, anti-sickness tablets and bone marrow injections that I’ll need to inject into my tummy! They let me practice on a fake tummy! They also gave me mouthwash and moisturiser. 

I have a 24hr number to call if I’m worried about anything at all. So far though I feel fine. Not really any different but I think that may be due to the steroids helping me out?!? A friend said her side effects kicked in once she’d stopped the steroids. It’s a bit of a waiting game. I’ve never waited to be poorly before! It kinda always just happens! Plus I  have no idea what this ‘poorly’ will look like. Very odd situation. 

Apparently I may not be able to sleep tonight due to steroids attempting to convince my body that I’m on speed! I’m hoping to override those signals! 

Who knows what tomorrow brings but today has been more manageable than I thought. We’ve got this gorgeous ladies! The fear of the unknown today was definitely far worse than the treatment itself. And if the nasty side effects do catch up with me, it will be ok, they will pass. 

Hope you all are doing ok. Sending my love. Sarah xxx 

[surreygirl123]

Hi,
I start my chemo tomorrow, I'm a bit nervous.  Any ideas of things I should take with me, (apart from obvious things like book, tablet, snacks).  I'm having 4 rounds of EC, fortnightly, then 12 weekly Taxol treatments.

[HighlandGirl]

I got given some soup, a sandwich and a yoghurt for lunch, but I did check beforehand and had taken snacks just in case! They were also really good at bringing tea and coffee throughout.

I do hope it goes well for you on Monday. I'm now on day 3 and have been out for a short walk this morning and am going out for lunch with friends. I haven't had any sickness issues and the tablets they gave me to bring home have been great. I don't have much appitite and haven't slept well but still felling pretty good despite all that.

All the best and let us know how you get on on Monday. 

[Tizzy]

Hi ladies

Well I've come to join the group as I start chemo this month. I had my excision on 2 July and the operation went well and my lymph nodes were clear, which is great, but as I'm Her2 Positive I have to have chemo before radiotherapy.

I've had a phone oncology appointment and now I'm going in for my pre-chemo appointment on 19 Aug, then bloods and covid swab and then an appointment on 23 Aug (my wedding anniversary!), which I think is the actual start. I'm having TCarboH (Docetaxel-Carboplatin-Trastuzumab). The Her2 Positive means I have to have the Trastuzumab, which is the one I'm most worried about. Is anyone else on here having similar. I know we will all have our own journeys, but I just wonder if anyone else is having the works like me? 

No doubt I'll be on this group a lot.

Good luck everyone

Tizzy x

[SlightlyBewildered]

Morning Everyone

I start x4 rounds of TC chemo this Friday. 
I’ve tried not to read too much as I know it effects people in different ways. 

This is the most scared I’ve been so far though. I’m a single Mum with two teenage sons. The boys are being amazing and I have close friends helping me. Plus my own Mum is coming to look after me for the first few days. I’m mostly worried about the nighttime for some reason! I think potentially feeling really poorly, not being able to sleep etc! I will be super glad to get the first one done as nurse said that should give me a general idea of how the others will pan out. 

I’m going to try the cold cap. I have a couple of friends that have used it successfully. They have given me a list as long as my arm of things to prepare for and to help me get through it! It sounds joyous! 

I’m so glad this little Aug group exists. Thank you xx Horrid that it has to. But for me, having others that are going through similar is really helpful. For info/advice But mostly for the amazing support.

Sending my love to you all. I’ll keep you posted ……. 

Sarah xxx 

[MargoB]

Hi 

I am also wondering if you can have someone with you during chemotherapy - the Oncologist did say that you are ok to drive and having chemotherapy doesn't affect you car insurance 

Xxxx

[purpleworld]

Sorry - pressed post before wishing you all the best for your treatment and recovery!!

[purpleworld]

Hi HighlandGirl

Thanks for taking the time to reply. After I’d posted the message I then had to go to the hospital for bloods and realised I was right outside the oncology department so went in and asked my questions. Nobody’s allowed with me and I was advised to get lifts as the session on Monday will be five hours!! Hope you don’t mind asking this silly question but I’m there over lunch - do I take a picnic!! 🤣

[HighlandGirl]

Hi Purpleworld (what a great name, I also love purple!),

I had my first chemo session yesterday. I wasn't allowed anyone to sit with me, but each hospital will be different so it's worth asking. I'm in Scotland so it might be different if you're in England. I fully recommend someone to drive you home afterwards. Personally I've had a cracking headache ever since and I wouldn't have wanted to drive home alone. Is there anyone who can help you with the boys, at least for a couple of days till you see how you feel? Again everyone is different so I can't say whether you'll cope or not.

Sorry not very helpful but I hope it goes well on Monday. Just keep thinking you'll be one step closer to being healthy again and running around after your boys. Many blessings. 

[purpleworld]

Hi all

I start chemo this Monday 9th. Feeling scared about feeling unwell (3 boys at home with me, 1 who has additional needs). Does anyone know if I can take someone to sit with me and if not will I feel ok to drive home after the session. 
Thank you 😊 

[HighlandGirl]

Hi MargoB,

My oncologist said to ask my GP for the note. She said anyone going through Chemo is entitled to ask for the whole time off if they want and that the GP shouldn't even question it. That's what I'm going to do but not yet as my company have said I can use all my holiday allowance first as I'll most likely be off for the rest of the year. I only get 6 weeks sick leave on full pay so using holiday will extend the time I can get full pay. I spoke to someone from Macmillan about it and they advised me to do it that way too. 

[justine1970]

Hi

I start on 17 August. In prep I have had my teeth cleaned, had my eyebrows micro powdered and am sorting a wig! Not sure about anything else although I am going to batch cook some soups!

[Kitkat23]

Hi Margo....ask your GP for a fit note.....mine just said ‘how long do you want’ ....I think I had one for 3 months....2 for 2 months and 2 for 1 month.....it was up to me....I didn’t actually speak to the GP ....just asked reception to pass on request....then it was emailed to me .    I had chemo last July to November .... I didn’t want to work during chemo either.....hope you don’t get too many side effects.

[MargoB]

Hi 

I'm due to start EC in next 2 weeks haven't got a date yet  - I don't do well on medication and I'm thinking of stopping working till ive finished chemo Who issues the sick note thou ? Is it the hospital or GP and can you get a note to cover the whole 18 weeks ? 

Xxx

[MargoB]

Hi 

I'm due to start Chemo this month- is there any advice for things I need to do before I get started x TIA 

[Shi]

Sorry you all find yourselves on here ❤️ Step by step together 👭 you will get through. Hang on tight to each other, be kind to yourselves and ask away on here, there are lots who will jump on the threads and help ❤️ Do it your way and what works for you, there are no right or wrongs, getting through safely is what matters ❤️ If your antisickness meds don’t work phone your rapid response number, don’t think oh it Chemo and out up with it, they will tweak your meds till they get combination right for you and mostly they get combination right straight away ❤️ Book yourselves on a look good feel better course at your local Macmillan ❤️ Do read mountain lion by strawberry blonde in hope and inspiration ❤️ It’s helped lots of us over the years. Get thermometer to keep track on your temperature during chemo and phone rapid response to check anything with your teams while on chemo, they want you to do they get you safely through ❤️ I did charts so I could keep check on meds taken during chemo because it can give you chemo brain ❤️ Hope this helps a bit, do ask away ❤️Everyone is here for you and please use all the support Breast Cancer Now has here too. Please look at donating hair to little Princess trust ❤️ Makes wigs for children ❤️ It helped turn a negative of loosing locks into a positive because it was going to help a child ❤️💕💕✨✨Shi xx

[HighlandGirl]

Hi, I'm due to have my first round of EC next Tuesday. It's all a bit of a whirlwind at the moment and reading all the information about the drugs is a bit overwhelming but I'm ready to get started. I was diagnosed about 6 weeks ago so this is my first step on the treatment plan.

I'm thinking I'll probably stop working till after chemo so Monday will be my last day, which feels a bit weird when I don't even feel sick yet! 

[justine1970]

Hi

I am due to start in August however do not have a date as yet.  I have been asked to consider a trial and my plan would be:-

Cycle 1 Day 1 Carboplatin and paclitaxel, Cycle 1 day 8 paclitaxel and Cycle 1 Day 15 Paclitaxel and then same until Cycle 4.  Cycle 5, 6 and 7 is anthracyclines.  There is then 12 days of 2 tablets a day called Olaparib then 6 days off and then back on the 12 days and so on.

I feel super scared and like this is a huge amount of chemo compared to others I have read about.  Really panicking that I will be bed ridden for 6 months.

😞

[Kelcancer36]

Starting chemo in Aug for breast cancer. Feel like I've dealt with everything this far OK but I'm struggling now, chemo seems so frightening 

[Mai7]

Hi 

This thread is for anyone due to start chemotherapy this month.  I’m sure others will be here soon but please introduce yourself and you can all help one another through this phase of your treatment.  If you have any questions please post away on here and others in the community will watch over you whilst you are getting started.  Once you are into it you'll be pretty good at helping each other.  You can also ask the nurses on this forum if you have any concerns.  In the meantime, the top tip is always to stay well hydrated throughout chemo, aiming for 2 litres of water per day and get a thermometer and check your temperature every day.

Here is the BCN guide on chemo:

https://breastcancernow.org/information-support/facing-breast-cancer/going-through-treatment-breast-...

Here are some apps which can help to keep you on track: 

https://breastcancernow.org/information-support/support-you/becca

https://www.nhs.uk/apps-library/owise-breast-cancer/

https://www.careology.health/

I finished my chemo in October 2017 and doing very well again now.  Here is my story which has some chemo tips on how I coped which were collectively shared from others who had gone through the same from this forum:

http://lifeafterlola.com/

If you decide to set up a private group its good to stay on here also during treatment as I know from experience there are some people who watch but don't immediately pluck up the courage to join in.  Your conversations can be a real comfort to others.

If you’re new to the forum, here’s the “Getting Started” advice:

 https://forum.breastcancernow.org/t5/How-to-get-started/bd-p/welcomegetstarted