HER2 positive

Hi, I had two tumours in right breast both 3mm with one lymph node involved. I am HER2+. Chemo - it is hard but it is doable, that was words of wisdom a nurse gave me. Slow things right down. You will be knackered, giving yourself some slack mentally as well as physically helps. I pulled my life in and small things became my to do list. Like make a shopping list then do shopping the next day spread things out.. If you need to hold that sofa down then you need to hold it down good and don’t move! Do not accept sickness some people are lucky and don’t get much if you do like me then keep asking your team via the rapid response line I tried five different sorts. Finally had one tablet that lasted five days and the daily sick tablets on top. Anything no matter how small brother the team with it whether it be lumps, rashes, , oral thrush, constipation or liquid poo - dunna suffer through it you don’t have to they have alsorts to through at you. Eat what you can when you can forget eating a certain way your tastebuds go awol just experiment with everything going. You will develop a pattern that is you. the first cycle is discovery and a bit whoa, the second consolidates it then you have your pattern. Dig in cos it is cumulative so gets harder each cycle. But again just get through it. We aren’t brave we have no choice! That became my mantra! Keep attention during your bad days on a day at a time - you do get relief just before your next cycle starts so I planned any visits with friends for then. I marked calendar ahead for six months up with good days and bad days so when you need to make appointments or arrange to see friends you know when you aim for. When my hair started to throw itself from my head I went for the early shave it felt good to take control. It depends what your side effects are cos everyone’s are different according to our body our immune systems and the chemo we are on. I can advise on liquid poo, constipation, leg spans, sickness upon sickness. Ooh and the feeling of just feeling odd where you can’t describe what it is just you aren’t right! I had an energy chart for the kids so i could ping to it to say mummy is at 30% today or pointed at the salt pot to say mummy is here today. it helps them and others to visualise how you are feeling. 

Also I forgot practical. take snacks, drinks and entertainment into sessions cos sometimes things overrun and you can be there for a long time. I purchased a power pack for my phone so had additional charge to hand. I pre-loaded ipad with movies and series to binge watch. Also a wrap or poncho cos if you get cold you can’t put a jumper on cos you hooked up to drip. They should have blankets but sometimes not. Swap hands for hooking up cos your veins get harder to get into as you progress so spread it around a bit. Then smile at others in there, it can feel lonely sometimes and a smile goes a long way! 

Aww thank you, yours was caught early wasnt it. Your tumours were very small. Thank you for that advice. xxx

Hi Claud272

Sorry for being so tardy with my reply especially when you were probably reeling from your diagnosis. It comes as a very big shock which it took me some time to digest. It was something that didn't happen to people like me! No one in my family that I was aware of had had cancer although my daughter's mother in law died from it a couple of years earlier (In part to having a tumour  misdiagnosed as a cyst)

I had 3 tumours, 2 were HER2+ and one was ER+. I had 3 weekly chemo followed by 3 weekly Herceptin injections for almost a year. I was originally supposed to have a mastectomy immediately following chemo but despite being told it was essential that I have the mastectomy as soon as chemo finished it was ruled out off because of Covid. I did however get it 4 months later thanks in part to David Ames MP's intervention  (Thinking of him so very much today - what a senseless cruel stabbing). 

I had a double mastectomy, initially, it was proposed that I had just the affected breast removed and a reduction in the other but because of covid, this was not possible. They did however agree to give me a double mastectomy with no reconstruction. Initially, I felt upset that I couldn't have the reduction and reconstruction but now it doesn't really bother me. The one thing I didn't want was to have just one breast off and the other, cup size j/k left dangling. 

Anyway long story short, both were removed, I had a sentinel node biopsy too which was clear. It was genuinely surprisingly easy. I did not need drains and I had no swellings. The scar isn't particularly beautiful and it took a while to heal. I massaged it each day as directed by the physio and I made sure I did the exercises. Today over one year I can't quite reach the very top shelves in my kitchen but I have good arm shoulder mobility. I have a couple of "dog tag" lumps in the breast valley but my surgeon says she will remove these for me. I was given a nice bra and pair of prostheses but I don't tend to wear them much, I wear loose clothes and silk scarves to distract from my flat front. It is quite nice not to have a bust bumping up and down when I exercise (I try and do a little cardio each day). My biggest gripe is that I have thanks to the anti-oestrogen medication acquired a lot of additional fat around and above my waist. It is almost as if my bust has slipped down to join my stomach and I do resent this. The chemo and Herceptin completely got rid of the HER2+ tumours but not the ER+ one. The mastectomy took care of the ER+ but it also means I was on Letrozole and now Exemestane.   

I am 70 plus now but if you are younger or concerned about looking good, then my advice is probably to go for reconstruction (despite the increase in pain); but for myself, my treatment proved good and relatively pain-free. Look up my case profile and do please come back if you want any other information (although a quick look through this thread shows me there is some terrific support already)

I do hope you have a supportive and caring net work around you. I was and continue to be very lucky, my daughter came to all my chemo sessions and was there for all oncology and surgeon appointments. When I wasn't on the ball she very much was. My husband waited on me hand and foot and all of my family were very caring. Being surrounded by love can transform what is scary, negative and at times miserable into an uplifting experience. To anyone out there who doesn't have this support get onto social services and the Macmillian nurses, it is amazing what can be organised for those that ask. 

Much love x

My the same now I will be starting treatment , heads everywhere with family etc how will I cope , lots of questions I think some of the questions I want to ask I won’t get an answer to as pushing for them to tell me things they can’t xx

Hi toxophilite, this is so good to read that your 5 years on still all clear. There are days I get down, I am waiting to start chemo at the moment, had surgery my 20mm tumour has been removed and lymph nodes they removed clear. Looking at chemo and herceptin as belt and braces and to be honest I would not rest now if I didn't have it. There are certainly some good  reads on this treatment. I can work from home so going to try and do that. Thank you for putting this on, best wishes xxx

Rozalia

So happy and grateful for sharing your experience honestly. You are an amazing woman! At times I am trying hard not to let BC define who I am, and keep reminding myself to keep fighting on (can almost feel the boxing gloves on, going in the ring next!). Can't quite believe that I am in this position. I went to the Onco appointment and felt its like an outer body experience, this isn't me...and all v surreal.

What can you do but to trust all those around you in your journey of healing. Sad about the news of David Ames...such a senseless act! It must have been agonising to wait for your op.

I haven't got family here. However my partner and child have been great, but when they aren't I guess I need to communicate more. No one can guess your needs all the time and caring has different levels to it!

You are inspirational to me, will think of you when I start chemo. And take a step at a time in the journey ahead. 

Congrats for coming so so far. Sending love and hugs

C x

Thank you Claud272. Good luck as you prepare for your chemo. It is do able, warm slipper socks were a must for me plus my kindle and phone. Post chemo sessions take things as easy as you can, don't expect too much from yourself. I got a disabled/blue badge in part because of osteoarthritis but I recommend any one going through chemo to try and get one. It makes all the difference. Remember cancer is recognised as a disability covered by the Equality Act. 

Thinking of you, keep me posted xx

Hi

I’m currently on cycle 5/14 of preventive chemo and herceptin, not as many  side effects as the chemo prior to surgery and more settled in a routine. Keep going, there is light at the end of the tunnel.

 I think it is fairly common for your taste buds to change, I’ve always had a sweet tooth but didn’t touch chocolate or biscuits for months. I loved soft fruits, strawberries, melon etc. The best diet you can have is the food someone else makes you, I’ll even confess to having breakfast in bed a few times!

I think my weight gain was fluid retention and going from working flat out 5/6 days a week to just getting out of bed 5/6 days a week!!  It soon resolved.

I had 3 cycles of EC and 3 cycles of TPC before surgery and they were long days but it does pass quickly, I mainly amused myself by watching everything going on around me. By the second one I got really brave and managed to wheel my drip stand to the toilet. In fact that’s my biggest tip, make sure you go to the loo just before treatment!!

Thinking of all you ladies starting or having chemo next week, it is worth it, you will get through it and life will be even better when you come out the other end xx

Good luck for chemo tomorrow and to everyone else starting it. There are some great tips from people on here.  Just keep asking - it’s good to talk and share experiences