Her2 positive

Julz67

@riss81 where did you get the tattoo brows? I've never heard of them & have noticed my brows starting to thin.
I'm HER2+ hormone negative they said it's protein based, just completed round 4 chemo two days ago 

Tri

@Cheri and other thread contributors thanks for raising the questions and generously sharing your stories - very helpful and demystifies things! 

I am sorry this is a bit long but I wondered if sharing my experience of neo adjuvant treatment might be helpful to you or others. 

I was diagnosed in February this year at age 61, HER2 positive, oestrogen and progesterone positive (triple positive) and my cancer type is invasive lobular cancer. I had a lump of just over 30 mm. 

I had 6 cycles of neo adjuvant treatment- Herceptin, Perjeta and chemo (Docetaxel plus one other) intravenously through a port surgically inserted in my right arm. 
I understood that pre-surgery treatment would be useful because my treating team would have early insights and data about whether the chemotherapy is working (or not) and benefits included reducing the tumour, insight into drug tolerance and what options for chemotherapy might be effective after surgery depending on my pathology results. 

I had a mid-way ultrasound and when it showed that my tumour was shrinking, as a patient, I feel that was a really significant benefit. It was encouraging to me, my family and friends.

I have found it helpful to mentally set some ‘milestones’ for each stage of my HER 2 treatment regime in my case: neo adjuvant, surgery, radiotherapy, post-surgery treatment. 

Breaking it up gave me moments to pause and appreciate where I was at - I felt happy to welcome back my taste buds or my hair and fingernails growing back a bit a couple of months after finishing neo adjuvant therapy. 
During my neo adjuvant phase I was grateful my oncologist was so concerned about making my experience sustainable very early on, taking into account my working life, my spouse’s experience of this and my wellbeing. She was open to tweaking my regime - for example changing to a weekly instead of a big dose every three weeks. In the end I stayed on the conventional treatment cycle.
Yes I did encounter side effects - not all at once but I experienced fatigue, dehydration, diarrhoea, mouth ulcers, sore feet and fingers (neuropathy) and loss of taste.
 I was unlucky and contracted Covid unfortunately very energy sapping. 

I highly recommend an oncology exercise physiotherapy program, an adapted program focused on strengthening, wellbeing and building stamina; I started towards the end of my neo adjuvant phase but wish I had done so earlier in the regime. 

I was fortunate to have a very skilful breast surgeon for my lumpectomy and I have completed 15 sessions of radiotherapy at our local radiology unit. 

I am now completing the remaining treatments: I’m having Kadcyla every 3 weeks. 7 more cycles to go…! Last one in late April if all goes well. 
I hope you have a positive experience and are kind to yourself if you have tough moments. 

I feel a little overwhelmed by the kindness and good vibes that have come
my way and I am just very grateful for the support of platforms like this, my husband, sons, family, friends and colleagues - especially those who’ve experienced breast cancer who’ve come forward with generous insights and care - and incredibly skilled professionals in every part of the health system who are busting their brains to help. 

That’s what keeps me inspired to do my bit and give it my best shot. 

arpie

Well done @Tri .... bad luck about getting covid on top of it all xx

Welcome to the forum - whack up any question you like & hopefully some of us will be able to help with an answer xx. Feel free to check out this post, with lots of info on 'the rest' of the forum, where we share recipes, pics of our pets & gardens, our arts & craft & anything else that we do in our 'down time' .....
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

Wishing you all the best with your ongoing treatments xx

Tri

Thank you @arpie! And thanks @cheri for posing the question

PSP

Hi Cheri, I was diagnosed with HERS 2 positive in July this year. I opted for a double mastectomy and removal of sentinel nodes (August), two weeks later I had an infusaport inserted for my chemotherapy. I have now had 4 rounds of chemotherapy and luckily haven’t had to many terrible symptoms, main gut issues. I shaved my hair off so that I could get used to having no hair and have had no hair loss yet 😂. I was offered cold capping but chose not to have it after reading up on it. Mainly because while it stops some hair loss, it doesn’t prevent all of it. I thought I would just look messier with part of my hair out rather than all of it. I bought lots of head covering and wear a variety of these as my hair starts to grow slowly back. I was surprised how cold my head gets without hair. 

Good luck with your treatment. 

arpie

Fantastic that you are going so well on your chemo, @PSP .... Welcome to the blog - that made me laugh, about shaving your head & then not actually needing too!  Apparently the feel of hot water on a bald head can feel amazing tho! (I read that somewhere .... I didn't have to do chemo, so didn't lose my hair.)

Feel free to start a new thread on Newly Diagnosed, telling us your story so far .... your diagnosis, which surgery you had  .... then you'll have your own 'diary' on your journey so far, to look back on later, all in the one place  x

Have you joined the private Triple Positive group yet?  You can chat away in total privacy there, as only members can see the posts.  Jump on here & click JOIN - tho it probably won't happen now til Mon xx
https://onlinenetwork.bcna.org.au/group/31-triple-positive-breast-cancer-tpbc

Take care & all the best for your ongoing treatment xx