Breast Cancer – has bad is chemo going to be

im booked into start chemo;EC for first course, on weds 1st although this may be delayed a week now depending on them having my most recent biopsy results and to be honest I’m just abit scared.

Im not an emotional person and I feel so much guilt about the effect it is and will have on my family I don’t really want to worry them by showing fear so I just wondered if anyone who’s had this type of chemo could tell me what to expect or what you experienced.

also meant to be having my hair cut short today ready and this feels like such a massive thing , stupid I know .

thanks and sorry for long post Vikki x

268 posts since

22 Aug 2019

Hi Vikki

I can assure you that it will not be as bad as you think it may. I had 6 ECs ended Dec 2019 and though felt rough at times and had to pop into hospital as white blood cell count low (they give you stuff to prevent this happening again if it occurs) it was all very doable and manageable.

I wasn’t sick or nauseous at all so either lucky or the anti-sickness meds they give you do work. Lost my hair (quite liberating!) but now have bonkers hair (thanks lockdown!).

I’d suggest if you want some emotional & practical support that you join the monthly chemo thread on MacMillan site…full of lovely ladies (and some gents!) going through BC chemo who are all in the same boat and willing to share tips, moans, advice and much more.

If you have a good support team and lovely chemo nurses like I did you will find parts very enjoyable. I hope you do too.

Good luck

Sam

4 posts since

30 Jun 2020

Hi Vikki,

I’ve completed 4 EC cycles & almost a 12 week cycle of Carboplatin & Paxotaxil, totalling 6 months. I can honestly say the side effects weren’t nearly as bad as I was expecting. I’ve been told by my nurses that my type of chemo is tough but I’ve not experienced any physical sickness at all. The toughest part for me was waiting for biopsy/scan results & losing my hair. I actually shaved it on a number 4 when it started to fall out as having it fall out in clumps was too upsetting for me. My wig specialist told me not to go any shorter, to avoid friction with my wig. I’ve actually got used to the bald look now & I’ve decided I will keep it short & release my inner rock chick look when it starts to grow. I also love the fact I can just shower & go. I save an hour each morning, so all I can say on that is embrace your new look. I didn’t lose my eyebrows or lashes until the 2nd stage of chemo, probably around week cycle 7 and I still have the shortest, sparsest, barely there lashes that I can just about get a little bit of mascara on. Eyeliner is a godsend too.

So here is what I experienced & you may or may not too. Sticky eyes from 1st round of chemo, which lasted a month or so (drops can be prescribed)

Oral thrush & sensitive teeth throughout my treatment. I recommend Sensodyne toothpaste) Mouthwash can be prescribed from oncologist.

Itchy scalp during hair loss. Won’t last long but it is annoying.The wonder cream Sudocrem was a massive help & I used to slap it on my head to stop the itching. Weight gain. I’ve put on a stone in weight as the steroids make me feel hungry but I’ve got that under control now. Take your anti sickness meds, they really work. Drink plenty of water to flush out the chemo and on the plus side my complexion has never looked so good.

Wishing you all the best with your results, during chemo & for the future. You will smash it x

15 posts since

2 Jun 2020

Thank you both for your replies , my treatment is now starting tomorrow Plain and all though not looking forward to the side effects it does help to hear from people that have experienced that it’s not all that bad and is doable .

Thanks again hope you’re both recovering well x

1 posts since

10 Jun 2020

Hi, I am a year down the line of my diagnosis of Her2 breast cancer. After lumpectomy I had six doses of chemo. Was up and down throughout but never sick. It messed with my stomach more than anything, going to the loo was unpredictable! What is can assure you of though is that some months on you do forget it After radiotherapy I am now feeling more like my old self (if it wasn’t for lock down!!) My energy levels are good and my hair is re growing, wavey!!! Eat well, rest well and stay positive, all those around you will be a great support. Good luck. Bea

8 posts since

6 May 2020

Hi Vikki,

I’m 28, with grade 2 breast cancer- unfortunately been told I have BRAC2 gene problem so will need a double mastectomy. Was hoping to get away with lumpectomy but oh well!

After lots of covid-related delays, I’m currently a few rounds into EC and feeling good. Of course everyone differs and it depends how fit and well you are to start with… but I have hardly noticed I’ve been on chemo. Apart from being bald now, no one would ever know. They have to warn you of all the side effects, but in my case and many people I’ve spoken to- it isn’t half as bad as you might expect. The only side effects I’ve experienced is insomnia for the first few days as a result of steroids (not sure if you’ll have these?) and constipation for a few days. Fingers crossed you have a similar experience to me and sail through chemo.

Good luck with your chemo tomorrow. I think its fantastic they’ve been able to organise it to start quickly. Once you’ve got the first one under your belt I hope you’ll be able to settle a bit more and know what to expect. Good luck, Dee xx

12 posts since

7 Jul 2020

Hi Vikki,

Sorry to hear you are going through this.

My wife was diagnosed with Grade 3 HER2 Positive breast cancer 2 weeks ago, and 2 lymph nodes have also tested positive from the biopsy. Her lump was 50mm x 48mm.

Is this similar to you?

Her chemo starts on 21st and like you say everything is moving so fast with so much information to take on board.

The worrying thing for us at the moment is we are yet to get results from bone and ct scans that were done last week to see if it has spread.

She is convinced it has, as she is experiencing other pains, it started in her chest, then neck, then upper back now lower back.

At first I was hoping it may just be from stress and anxiety.

But the more I read doctor Google the more I worry incase it has spread and one thing I read that it could be a tumour pressing on a nerve in the back. I don’t know. Just fear the worst I guess.

Did anyone else experience anything like this?

The one sort of positive I am trying to cling on to, is when we saw the oncologist I asked him if it had spread, he was non-commital as the scan results haven’t come back yet, but he brought up her blood test results from the week before and he said they all seemed fine, nothing was out of the ordinary, her calcium and ALP levels were fine.

It also worried me when I overheard a conversation between him and his nurse who was trying to organise dates, she could only fit her in for the pre-assessment on 24th and the oncologist said no that’s too long.

That concerned me a bit, makes me wonder how concerned her really is about it, or whether it’s just procedure to treat everything as quickly as possible.

I don’t even know what it would mean if it has spread whether it is still as treatable/curable.

Right now thats all I want to know… If its cureable but no one seems to be able to tell me without these test results.

How did you find your first chemo session?

She is having the covid swab and blood test on Tuesday, the line fitted on Thursday and line care on Friday

My wife also feels guilty and keeps apologising. Not that it’s her fault, I try to be strong and supportive but deep down I’m petrified, especially if it has spread, we have 2 young daughters and I can’t help but think how I would cope if the worst happens.

I try to be positive too, and so was she until these pains in her chest and back, now she’s thinking the worst and that is also making me think and bringing me down although I try not to show it. X

15 posts since

2 Jun 2020

I am so sorry you and your wife are going through this aswell and I really hope you get the scan results soon and they are positive.

i can’t really be of much help about how the doctors act regarding the results as I haven’t had my bone scan or ct results either, im just assuming that no news is good news .

i found myself analysing every little comment made by the surgeon / consultant / radiographer , I am the same as yourselves I just want confirmation that it is just the breast cancer and nothing more although as I said as I haven’t heard anything I think this is a good sign as the nhs have been very good in moving everything along very quickly.

my first chemo treatment itself was fine only took just over 2 hours but I did feel a lot worse after than I expected basically like the worst hangover you’ve EVER had, I am a little disssppointed in myself really how badly it seems to have affected me and feel weak and can’t say I’m looking forward to the next 6 months but from what others have said everyone reacts differently so fingers crossed your wife’s reaction is more palpable.

You will find the strength to cope I’m sure whatever the outcome , I will be thinking if you both x

12 posts since

7 Jul 2020

It sounds like you and my wife are at similar points, she’s a couple of weeks behind you with the chemo then.

The chest and back pain are worrying us incase it’s a sign it has spread. Have you experienced this? I’m not sure if it’s anxiety or something more serious.

I’m way too impatient for all this waiting lol. I just want to know what it is, how bad it is and if it is cureable.

I guess that’s a good outlook to have no news is good news.

And also with how fast it is all moving.

I read somewhere that they merge the bone and ct scans together to get a better diagnosis. I guess they have to be thorough. I’d say I’m struggling with the waiting/not knowing the most personally.

I know the treatment isn’t going to be the most pleasant but I feel aslong as I know it is all going to be OK at the end of it I see the treatment as a small price to pay.

No matter how much I try and be positive there is always the what if it’s incurable in the back of our heads.

And how we could possibly cope with that news.

I hope both of our scan results come through ASAP to hopefully put our minds at ease. X

12 posts since

16 Aug 2020

Hi Dee

just wondering how your treatment is going?

i too have the BRAC2 gene with a grade 3 triple negative breast cancer. Because of covid they gave me a lumpectomy first then chemo. I’ve had 3 rounds of EC and now started a weekly paclitaxel.
I wondering what they have offered you in regards to reconstruction?
I was told I don’t need radiotherapy if I opt for the double mastectomy and implants but now they’re saying because of covid they will just do one mastectomy on the breast that was infected with no reconstruction and I will have to go on a waiting list for the rest.

im a little fed up with that really. Covid really has buggered up my treatment.

i hope everything has gone well for you. Please let me know how you’re getting on.

sharon

108 posts since

10 Jun 2020

Hi. Ive only just seen this post. How are you getting on with chemo? Im on 6 cycles of FEC – T every 3 weeks. Ive just had my 2nd round and im finding the side effects not too bad at the moment. I was really nervous when i had my 1st round too, i think its fear of the unknown. But you learn as you go. I got emotional about my hair loss too, it just made this whole situation feel more ‘real’ when i had to have it shaved off. I hope things are going well for you

15 posts since

2 Jun 2020

hi,

good of to hear you’re are not feeling to bad with treatment. I’m halfway through my 8 cycles now finished 4 of EC and start tomorrow on 4 Docetaxel and targeted therapies so let’s see what new fun that brings

i had ups and downs with how I felt during treatment 1st quite bad , 2nd really pretty well and 3rd & 4th bit of a decline again…although tbh I think it has a lot to do with my lack of resting, hydrating etc I’m a terrible patient so I hope you continue not to feel too bad

Sometimes I think I’m more adjusted to the lack of hair than I actually am when ii get in public and I’ve started to lose eyebrows and eyelashes now which is difficult they’re still there just thinning .

on a positive note I haven’t had to shave my underarms for a couple of months so silver linings

Good of luck with treatment

15 posts since

2 Jun 2020

Hi @Avfcstu ‍

sorry for late reply , I just wanted to check in and see how your wife was doing

108 posts since

10 Jun 2020

im due to change chemo/ meds on my 4th round. 15th october. Really nervous about it changing! Im halfway through now too, im having 6 cycles then mastectomy then radiotherapy. Im hoping to get back to some sort of normality early next year. And yeah, i haven’t had to shave under my arms or legs for ages. And its quite nice not having to really bother with my hair lol. Im not a great patient either, im scared of everything! But i think we just have to find a way to cope with all of this in the best way we can. Good luck to you too

5 posts since

3 May 2020

Good morning I was diagnosed with bc the week before lockdown. I had 3 cycles of EC and 3 cycles of docetaxel. With the EC I did need the anti sickness meds which worked brilliantly, I can only describe how I felt as hungover without the head ache this lasted about a week. I felt tired but managed that with exercise, sometimes a walk round the block sometimes a few miles depending how I was feeling. Having had a lumpectomy with no one allowed in with me and all appointments over the phone, going for chemo was lovely the nurses were all fantastic and it was nice to feel almost normal (strange as it sounds).

Don’t be afraid to share your fears with your family they may be having the same worries so you can support each other. With EC the nurse sits with you for most of it which is nice.

Good luck and remember to rest when your body tells you to.

Hope all goes well x

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