HER2+ ER+ - huge side effects

health123

Hi 
I was diagnosed with HER2 positive and estrogen  positive breast cancer  in October 24 
Am having chemo / Herceptin - perjeta weekly until 20/1 then prob surgery end of February. As I’m older 73 am so worried about survival rates and if the treatment will work 
I’ve had no ultrasound or anything to see if the tumour has reduced and I have a satellite cell next yo my tumour - multi 3 breast cancer 
it’s been terrifying to say the least and still in shock and have had huge side effects - numbness - chemo rash and sores all over my body / hair loss despite having the gold hat and diarrhoea 

arpie

SO sorry to see that you've joined our select little group here @health123 xx  Whack up any questions you have & we'll do our best to give you honest answers from those who've been there, done that xx. I am 73 this year ... diagnosed 7 years ago.   

Getting a BC diagnosis can 'do your head in' a bit ... if you feel anxious or sad, give our Helpline a call on 1800 500 258 (Mon-Fri 9-5) for a chat xx. And I'd suggest you have a listen to the Charlotte Tottman Podcasts (she is a BC Counsellor who was diagnosed with BC about 5 years ago & had a double mastectomy, choosing to remain flat, so she knows exactly what we've all been thru.)  And she admits that her own reaction to the news/treatments was a bit different from what she'd expected, following her own discussions with patients in the years prior to her own diagnosis.  She is very easy to listen to, and talks a lot of sense, from her own experiences.
http://www.drcharlottetottman.com.au/my-podcast.html

I am guessing your progesterone result was positive too?  We have a private group for Triple Positive members, where you can chat about your treatment & side effects etc in total privacy, if you'd like to join it?  They should have some good tips on reducing the side effects ... Are you taking Gastrostop or similar for the gastro?  Usually 2 tablets on the first episode, then one after any following episodes, til it stops?  Keeping up your fluids too, will help prevent dehydration - that is very important.  The sores are a bit of a worry .... are they open & weeping?  When do you see your Onc again (or GP)?  That needs to be addressed    
https://onlinenetwork.bcna.org.au/group/31-triple-positive-breast-cancer-tpbc

Try not to get ahead of yourself (thinking of the 'what ifs') as it will only muck with your brain xx. The diagnosis alone, already does that.   Try & stay in the 'present' and go from one day to the next, one hour to the next, if need be xx.  Keeping yourself as busy as you can (if your side effects allow you) is a good way of stopping the mind from going off in tangents xx.  I binge on Netflix a lot, when I need to pass some time .... 

You can also read up on other areas of the forum that may interest you, here (including some tick sheets on your mental & physical recovery, post op.)  We also chat about art & craft, gardens, furkids & other 'normal' topics xx
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest

Take care & all the best for your ongoing treatment xx

Suki

Hi @health123

Sorry to hear of your diagnosis and side effects.

I was diagnosed with stage 2, grade 2-3 triple positive and completed 6 rounds of TCHP chemo/Herceptin/Perjeta in 2024.  While triple positive can be aggressive, it is also highly treatable - most tumours shrink or might disappear from the chemo.

I had a "half way" ultrasound, but ultimately it is the pathology report after surgery that gives you the info you need.  It will tell you if there are any cancer cells left, which will guide further treatment. 

Some of the treatments are fairly new, so there is not a whole lot of long term data around.  Herceptin was a real game changer for the prognosis of HER2+ but wasn't discovered that long ago (and firstly only used to treat metastatic cases), so I recommend staying away from Google as much of the info is out of date.

I am sorry you are having major side effects. Please let your oncologist or breast care nurse know. You are nearly at the end of your chemo and effects can be cumulative - I remember feeling really rotten after the last cycle.  I also felt surgery was a breeze after chemo, so you could be nearly through the hardest bit  .

I got  diarrhoea and used Gastro Stop to control it.  You can also eat bland foods like bananas, dry toast and potato if you can stomach it.

I didn't cold cap and lost all my hair (including eyelashes & partial eyebrows after the end of chemo) - my head hair started growing back properly about 3 months after the chemo finished and my eyebrows/eyelashes are only regenerating now (9 months after chemo).

As mentioned by @arpie, please join the Triple Positive group to chat with kindred spirits xx