Grade 3, diagnosed 13 days ago & feel like im dreaming

Hi LauraJD, sorry to hear about your diagnosis. I’m about 6 months ahead of you having been diagnosed at the end of January. It’s a lot to take in at the beginning and I found it helpful to keep a journal and note everything down, especially questions that I wanted answers to from my breast surgeon and oncologist.....I may have had too many questions but I am a bit of a control freak.

Don’t be scared of chemo, yes there can be side effects (everyone is different) BUT after 6 sessions (2 more to go) I can barely if at all feel the tumour which means it has been worth feeling like sh*t some days! I chose not to do the cold cap and just go with the hair loss, don’t get me wrong it is emotional to lose your hair, it’s part of our identity but you get used to it really quickly. It really is a personal choice, for me I just didn’t want to deal with “brain freeze”!

Good luck with your treatment and the rest of your biopsy results and if you want to ask anything please do just getting touch...I’m an open book!

Christine x

Thank you Christine! I have been toying with the idea of embracing the hair loss and wearing it like a badge oh honour- I’ve always wondered what I’d be like with a shaved head (I guess I’ve watched too many lockdown hair cut videos!)

it’s funny you mention a journal- I’ve already started one, I’m keeping car park receipts, cards, you name it. I want to remember surviving this and a journal seemed a perfect way.

can I ask, how quickly did your hair fall out? Did your chemo hurt? I’ve been told I will need steroids too, I have a vision of me being a bald blob!! What were your side effects of your chemo?

sorry for the million questions!

Ask away LauraJD!! I get what your saying about the bald head being a badge if honour, almost like a rite of passage! I find trying to keeping it light hearted really helps....

My chemo regime is 4 x EC followed by 4 x T. My hair started falling out before my 2nd cycle. Your scalp gets quite tender but if you choose to shave it off which I did the tenderness goes away...who knew it would hurt physically!!

The chemo itself doesn’t hurt, I found getting a canula every time painful BUT I have rubbish veins and ended up getting a portacath fitted a few weeks ago and it’s the best thing I could have done. My cancer is HER2+ so I have a years worth of targeted therapy (Herceptin and Perjeta) by infusion so it was the right thing for me.

Steroids are standard for anyone getting chemo, for me they cause insomnia which isn’t the best but you do kind of get used to it. During  the EC chemo the other side effects I had was headaches, nausea (not actually sick just feeling sick) and was really thirsty. I’m on the T part now and I have insomnia, fatigue, a little nausea and diarrhoea!! Everyone is different though....

You’ll be given anti sickness meds home with you which does help, more steroids and I also have filgastrim injections which are to boost my neutrophils (white blood cells).

This forum is great for asking questions, everyone is so helpful.

x

Hi Laura, 

Welcome to the community, it's so helpful to read everyone's experiences.

I'm 48, diagniosed in Feb 2020. Hormone positive but HER2 negative, grade 1 tubular lobular breast cancer that had travelled to three lymph nodes.  So for me that was operation first (31/03/20) inc removal of 17 lymph nodes then chemo, then radiotherapy, then ovaries removed at the end of the year for good measure!

Anyway, so far i'm halfway through chemo. three cycles of EC - no side effects. Had first Docetaxel last Tuesday and really, really suffered so willl be discussing with my Oncologist because I have a further two.

The reason for my reply to you wasn't to tell you all about me but rather my experience with the cold cap.....I have Raynaud's Syndrome which means that I'm pretty much always cold, losing blood in fingers and toes when cold.  I know that the cold cap doesn't guarantee no hair loss but I wanted to try it because it was important for me...and you only get one try on your first visit.  They told me to take 2 paracetamol an hour before my appointment and a blanket! I expected not to be able to tolerate it but afetr the first twenty minutes I pretty much forgot it was on my head.  (and my first treatments meant it was on for about 5 hours in all).  So the result today is my hair is  thin on top but I have a hairline and fringe. My hair was shoulder length so I cut it whan it started dropping two weeks after first chemo, since then it has stopped.

So I have wigs and a pink baseball cap now, but what this means is that in winter I can wear a bobbly hat and still look like me.  I absolutely applaud all those who have their heads....I just can't.

The very, very best of luck to you....x

Thank you for your reply, i am toying with the idea of embracing the bald look but will try the cold cap treatment. More so for my daughter as i think she will have the biggest shock if / when it happens. 

Thank you for the blanket tip- i usually wear lots of layers anyway so it wont be much different so i will take a thick blanket. I'm hoping to just grin and bare the cold cap but we can only see.

Cant believe chemo starts a week on Monday, it all seems a bit real now...

Best of luck to you too xx

Hi Laura

I was also diagnosed with Grade 3 Breast Cancer on 2nd July! Mine is HER +

I start chemo on Weds 29th July. 3 x EC then 4 x Docetaxel along with herceptin and pertuzumab. 

I will then have surgery early Jan followed by 6-12 months of the herceptin and pertuzumab. 

Hope it all goes well xx

does this make us cancer twins! I always wanted a twin, just not this one!!

im still getting to grips with the lingo bit mine is hormone negative (still not sure what this means)

im looking at surgery around December / January but the type of surgery depends on the genetic testing.

i start my chemo only 2 days before you so it’ll be nice to almost go through it together- I wish you the very best for your journey xx

Hi sorry just seen this on here I've recently been diagnosed with grade 3 ducatal breast cancer HER2 positive and have had my first round of EC out of 4 I will be starting my targeted therapies the exact same drugs as you just wondering if your had any bad side effects off the targeted therapy x

Hi Dianne 

hope Yyour treatment is  going well. lm new on this site and was diagnosed with the same as you in August.  Grade 3 Her2+ multi node and in lymph nodes. So glad I found another person with similar diagnosis as it’s hard to get your head around things and understand the journey we are and will go through  

I started chemo sept 2020 starting off with 3 x EC and then had my 4th session as Docetaxal along with pertuzamab  and Herceptin - this was very hard !! Suffered  dioreah and sore mouth for over a week.  Not sure if this due to chemo drugs or immunotherapy drugs ??  
depending on if the docetaxel works to shrink the rumour depends on how many sessions I have if it before surgery around feb 2021. 

im also struggling with sharp pain in my upper leg / thigh. My bone scan showed something but I’m told it’s benign. Yet my Pain is growing.  I’m a bit worried about this. 

Just wanted to see how it’s been going for you and how you coping with chemo. 

Hi Alice. 
I have the same diagnosis as you. Already had 3 EC chemos which were not that bad in terms of symptoms and side affects. Sore mouth tiredness and constipation was main issues for me on this drug  

I had my first dose of docetaxel 3 weeks ago along side pertuzamab and trans?? (Herceptin) drugs and have suffered from oral thrush, Mouth sores and diaoreah. Also during first few days after treatment - I was on a high and couldn’t sleep. Too much energy. And then It hit me with the symptoms above. I’m not sure if it’s the chemo or the immunotherapy drugs causing these symptoms. 
I am scheduled to have upto 4 of these chemo sessions but this dependant oin the MRI to see if effective or not. Then I’ll have the mastectomy and lymph node removal.

i hope your treatment plan goes well for you. Happy to chat to share experiences