Hi,

Sorry to hear about your diagnosis, I can completely understand the shock that you are feeling. I also found out a couple of weeks ago that I have HER2 positive breast cancer so am at much the same stage as you. I had an appointment with my oncologist last week and he's set out my protocol - 4 rounds of EC every 3 weeks followed by 12 rounds of weekly Pacitaxol. Surgery will happen at the end of chemo and then there's Herceptin every 3 weeks for up to a year. Finding out my treatment plan totally floored me and I've really struggled with getting my head around it. I had my initial bloods done last week and my first round of chemo is likely to be on Friday.

Playing the waiting game for appointments and treatment to start is really hard and gives way too much time to think about what lies ahead. I'm totally terrified at the moment because it feels like such a huge horrible mountain to climb!

I've set up an April chemo chat on the Breast Cancer Now forum so why don't you come and join me and we can go through it together?

Sending loads of positive thoughts to you x

Hi, my wife just had the last of her chemo last Monday (4x EC and 3x docetaxel) for triple + BC. She found the EC treatment fine. Her main issue on EC was constipation. So nip that in the bud right off the bat. Seriously, keep it under control.

It's been the docetaxel that has floored her. Horrid stuff. That said, she initially presented with 2 lumps in her left breast. One was 4.6cm, the other which was sat behind it was around 1.5cm. She also had two armpit nodes involved. Thankfully nowhere else. The EC did the expected job. Shrank the large lump by 1.5cm, and the other by some too.

The Docetaxel needed longer than the planned breaks between each course, as it really has knocked her. But the post chemo for the pre op scan dates remained the same, so she got the scans after 2 sessions rather than the 3. The docetaxel has melted the cancer. Using the scans only, it has had a complete response. No cancer can be seen on any of the scans. So what started out as a full breast removal is now been downgraded to a lumpectomy and 3 nodes removals. And those scans were taken before her last treatment.

So don't be too disheartened if the EC just does a partial job. Judge it by the whole treatment.

Before each Docetaxel treatment, she received 2 jags into her thigh that is aimed at the HER2+ side of things. They used to have to be given via iv, but it's a recent thing that those drugs can be given via injections. That will shave a lot of time off your visits once that starts. She has 9 remaining jabs to get.

That's great that your wife coped ok with the EC chemo. Was there anything in particular that helped her? I am working myself into a bit of a state about starting it but I think it's really just fear of the unknown.

That's amazing that the chemo did such a good job that her surgery plan has changed. I have a similar size tumour to that that your wife has so I'll be keeping everything crossed that my treatment has the same effect on it.

I'm so pleased that she got through all the chemo, great that she has that bit of her recovery firmly behind her. Is it the Herceptin and Perjeta that she is having injected? I'll be having that too in a few months.

Wishing your wife well with the rest of her treatment and thanks again for the post, it has definitely helped me feel a bit more positive.

Thank you for your well wishes.

Chemo treatment differs from individual to individual, but something that does seem to be a constant during EC treatment is the constipation. She was given powder laxatives for that. They didn't work that great, so she was given stronger ones which did help. Don't underestimate constipation. She found that worse than the chemo initially. The second type of chemo caused the opposite reaction for a few days.

Nausea is another common thing with EC, but you'll get meds.

Tips we have picked up, buy a soft bristle toothbrush. Even a baby one as you might get sore gums and a stripped mouth. My wife found mint toothpaste really irritated her mouth. She ended up buying oranurse toothpaste from Amazon, which is made for people going through chemo, those with altered taste and those who can't tolerate mint in general. It's flavourless and she says it's been a godsend.

My wife began to detest the taste of water. Many women don't have an issue. But if you find you're struggling drinking water, but some of that squeezy lemon stuff (that you use for pancakes etc) and put a skoosh or 3 in the water. It's better for your teeth than diluting juice.

I think that may be the injections she's having. She at a hospital appointment, so can't ask her.

One last thing, chemo side effects tend to be accumulative in nature. you'll probably think, "hey, this isn't as bad as folk make it out to be, at all" after the first and second treatments. My wife found it was her 3rd and 4th treatment that she began to realise it wasn't the best feeling for a week.

It's natural to be terrified of the treatment before it has began, but for many, many people on EC it's never as bad as they think it will be. I'm wishing you all the luck in the world and whilst this journey won't be a walk in the park, you'll come out the other side . we ourselves see a small *** of light at the end of the tunnel. Something that was unimaginable when we were at the beginning too. Never beat yourself up for having worries, we all have had those exact same thoughts, whether as patients or in my case as a partner.

Hi Daisy

Hope you don't mind me hopping on this post. I'm her2 positive and just last week had my 3rd cycle of EC chemo. I'll be having my last one on April 5th before having an MRI and moving to weekly paclitaxol. 

From my experience, I am fine with the treatment, but about 4 hours after I get home I have pretty intense nausea. It peaks and then stops. In total about 6 hours of feeling like I've anhialated the drinks cabinet! However, I've never vomited and truth be told, that really is the worst of it for me. I then without fail, have a good day the day after followed by 4 more days of feeling queasy. I am always back to normal by the following Monday. It isn't the same for everyone and I personally have had no issues with constipation etc.

My biggest tips are, try and eat even if you don't want to. Bland stuff like potatoes or soup and get some complan to have so you still get nutrients. I also bought marks and spencer green smoothie mix which comes frozen. You blend it with apple juice. Really easy and will build your red blood cells up in between sessions. 

I also suck on ice cubes whilst having my chemo administered. The C part of the EC is a bit weird on the taste buds and nose when it goes in and I find ice stops it. 

Also, make a note of all your side effects every day. When you know what has happened once it will likely be the exact same again the next time. 

If you inject yourself with filgrastim the day after your session, don't be alarmed if your body aches in different places. My neck ached and all of my upper back and breastbone, but it stopped after a day. 

Lastly ALWAYS call your nurse if you are worried about anything. After my first session I called so many times and sometimes in tears as my mind panicked at each little thing. It was the unknown as it will be for you, but the nurses are just wonderful and would rather you call so they can put your mind at rest.

You can do this! 

When is your first session? 

Big hug

Vicki x

Hi Vicki,

Thanks so much for your message, I am so grateful to hear about your experience. I'm on the same protocol as you, moving to weekly Paclitaxol after the 4 rounds of EC.

That's great that your experience so far hasn't been too horrendous and so long as it's only 6 hours of feeling like you've annihilated the drinks cabinet, that's doable!! Is the Filgrastim just one injection? I vaguely remember the nurse taking about injecting but I've been struggling to remember what it was for!

My first session is on Friday. I'm hoping I'll be able to think a bit more rationaly afterwards and not always go for the worst case scenario. At the moment, I'm not quite sure what I'm envisaging!

Thanks again and please keep in touch xx

Hello

Yes the filgrastim is the injection you give yourself 24 hours after treatment. It's easy. I do mine in my thigh and do it as quickly as possible. You don't really feel it. It basically stimulates production of your white blood cells to help in case you ever got an infection during treatment. 

After your first session you'll know exactly what to expect. I've been the same every session to the hour of the day! I know when I'll feel sick and when it will stop. It helps to know that no matter how grotty you might feel, it does pass. 

The only other thing for me was that I really hated the way I felt from the steroid they give you as a pre med. It took me to a dark place in my mind and I was crying a bit so I never took the tablets they prescribe to take home. They are given more for anti sickness. I told my oncologist and he reduced my pre med amount to half the dose and I tolerate it much better. So if you struggle with that, then do tell someone. You may be absolutely fine though. 

Bottom line is, none of this is pleasant, but it IS doable. And it won't last. All of this will pass and you must hold on to that thought even when/if you feel super nauseated or tired. 

I'm here if you need to chat. Xx

Had my port fitted today so feel a bit bashed around this evening but that's one thing ticked off and a day closer to starting. Had a good chat with my oncologist today too who has made me feel a smidge better about the chemo and outlook.

That's amazing that you've had the same side effects at the same time on each round, must make it slightly easier to manage. I hope your final round of EC goes well next week, you'll be halfway there!

Thanks again for all the tips and advice, it has really helped me feel slightly calmer. Roll on Friday! xx

Hi Daisy

How are you? How did your first EC go? 

I have just had my last EC on Tuesday this week. There is light at the end of the tunnel!!!

Vicki xx