HER2 positive breast cancer

Hi 

I was diagnosed with her2 positive cancer in January 2023, I had three cycles of ec chemo followed by 12 weekly low dose paclitaxel. The ec made me feel rough if I’m honest, however, I wasn’t throwing up all the time and just a little nauseous, I did lose my hair unfortunately with the ec chemo but it is doable. The paclitaxel was easy for me, a little fatigued but that was it and my hair started growing back ️  I did gain some weight but since chemo has ended I’ve lost it again.

I had two lumps also in one breast, so was only given the option for a mastectomy, but I asked for a double mastectomy, which they did. I had implant reconstruction straight away. 

im now on the finally part of my journey, which is herceptin injections every three weeks, no side effects 

I’m now cancer free 

Our journeys are unique, however, you can get a lot of support here ️ 

Please feel free to message if you need anything 

sending positivity and hugs ️️ 

So sorry to hear you've found yourself in this situation! After the initial shock of being diagnosed with breast cancer, things will gradually settle down and it won’t be as scary as it seems at the beginning! I am much older than you (58) and I had mastectomy with immediate reconstruction on 10th of July followed by 8 sessions of chemotherapy, the last one being on 30th November. A couple of weeks after I finished my chemo I am back to normal. Still getting tired easily and waiting for my hair to regrow but I am not complaining. Of course people are different and they respond differently to treatment but your medical team will do everything possible to minimise all your side effects and you will be fine. The whole thing is absolutely doable! I was terrified at the beginning but things really get better. Positivity is the key to going through this ordeal. Family and friends support too. And don't forget it's just a couple of months, it won't last forever! Take good care of yourself, eat as healthy as you can, do the things you and your children and partner enjoy and hope for the best! I wish you the very best of luck with your treatment!

Big hug,

Lana xx

Hi xxlkrxx, sorry to hear of your diagnosis. I was triple positive so hormone and HER2. I had 8 cycles of chemo 4 EC and 4 Docetaxel. EC was 2 weeks apart and then Docetaxel was 3 weeks. I cold capped but did loose most of my hair as EC is well know for this. However there are some who haven’t lost as much on EC. I found EC hard going the first few days were the hardest. By about days 7-10 I started to feel like myself just in time for the next cycle. I only had to do 1 day injection of pegfiligrastim to boost white blood cells. I found Docetaxel easier but had to do 5 days of filigrastim injections to boost white blood cells. You are more at risk of infections whilst on chemo due to low bloods counts. Whilst I was on Docetaxel I started my targeted treatment for the HER2. I had Phesgo and unfortunately reacted to it so I now have to have pre meds first for each session. These make me sleepy for the rest of the day and I can’t function as well. After chemo I had radiotherapy for 15 days whilst still continuing my Phesgo injections every 3 weeks. I’m now on my last two this month then that’s finished. Although I have pre meds which just last a day I don’t have any side effects from the Phesgo. Everyone is very different with how they react to the treatment so no one can tell you really how you will feel for your wedding day or tell you to delay it for a while. In my case knowing how I felt and was I would not have felt up to getting married and would have put it off for a while until treatment was done. Obviously that’s just what I would have done. Others will give you their insights into how they felt. 
I wish you all the best.

Hugs from cuffcake x x x x x

Really sorry you find yourself in this position. As you’ve probably worked out, chemo can be very different from one person to another. If you click on my name you’ll see my experiences of treatment, I put it in there because after a while you’re answering a lot of the same questions and it was easier. I was told that I had a pretty middle of the roads standard response to chemo but it’s very hard to benchmark yourself against others as we’re all different. I did put on 2 stone with steroids and eating little and often to stave off nausea, although i never actually was sick. It’s hard to know what to advise for your wedding, a dilemma and I do feel for you making the decision, it really is a personal thing and you don’t know how you’ll feel. I guess, now I’m on the other side looking back, I think I would’ve found it hard to enjoy the day fully, feeling the way I personally did, and having been married, knowing how full on the day is. But. You may not feel the way I did! All the very best to you x

Hi there, it is a lot to take in and the danger of trying to plan ahead is that your treatment plan can be changed due to side effects etc as you go along.

Make sure your dentist gives you a once over before you start chemo, that is really important.  Try and find out exactly what chemo drugs you will be receiving so you can look them up on the A-Z drug list, a lot have similar side effects but some slight differences.  My tumour was both HER2 negative and positive so I had surgery first the 6 rounds of 3-weekly carboplatin and docetaxel, plus Phesgo injection.  Also 6 monthly Zemeta infusion for bone health plus daily tablet of Letrazole.

My weight remained stable throughout, I lost my hair, eyelashes and eyebrows after the second round (didn't try the cold cap), was very poorly after the first round due to gastric pain and was prescribed Omeprazole which sorted that out.  You will be given anti-sickness meds and possibly steroids for each round.  The steroids made me feel better but destroyed my sleep pattern for a week during each cycle, the anti-sickness pills helped but still had metallic taste and could not eat or drink very much for around 5 days each cycle.  Became very weak very quickly and had very wobbly legs from around cycle 3 onwards.  Fatigue hit hard and needed to have siesta pretty much everyday.  I was either constipated or had diarrhea for much of the time, again you are provided with meds that help somewhat, bladder/bowel weakness also appeared at some point each cycle.

Everyone has different reactions/side effects and I don't want to scare you but want to be honest about my experience.  YOUR experience may be completely different and I really hope that you have a smoother ride on the rollercoaster.  I found that it is a full-time job fighting this disease, keeping track of the meds to take each day, lots of different appointments, lots of hidden things like nail care, oral health, neuropathy in fingers and toes (my feet still feel like they don't belong to me),  my toenails fell off towards the end of my treatment!  Still waiting for them to grow back, my fingernails are still super brittle and short, dry, itchy eyes (eye drops help), lip balm essential.  Can't have any microblading or cosmetic injections/semi-permanent make-up for at least 6 months after chemo finishes ... Just thinking about your wedding and any preparation you may be thinking of.

Again, your experience hopefully will be very different but find out as much as you can about the drugs beforehand so can be best informed.   The breast care nurses are fab and will help wherever they can to advise you, the more info you have the more forewarning you have.

If you need to talk or have any questions for me please reach out, hugs, BexF

 finished my 6 rounds of Chemo on the 24th November for Her2 positive breast Cancer, I’ve just had a mastectomy on Tuesday and doing okay

After reading your experience with chemo your symptoms sound exactly the same as mine, although I  cold capped and managed to keep most of my hair on my head but everything else went. 
I found the not being able to eat the worst part really, everything tastes so bad, I had delayed onset nausea so mine didn’t come on till about day 5 and then the diarrhoea came sometimes after a week or so. I was lucky I was only physically sick on my first cycle. 
I found it got a bit tougher each cycle. 

I never really read anything  about chemo before mine started as it was all so quick. 
I hope this helps people just starting out on their journey. 

X

Oh wow that’s amazing you got to keep most of your hair. Did you use anything else alongside cold capping to help with the hair loss? Grateful for any tips xx 

I had my hair cut short after the first cycle as so much was coming out.
I bought some natural shampoo called Head’n Hair by Wunderbar, I just went to a local hair stockists that said this has had good results with people having chemo, I don’t know whether that helped or not but I guess lthinking about it after using it I didn’t lose as much. 
I tried not to wash it as much as I did before. 
My hair did thin only on top by about 50% but it wasn’t really that noticeable so I was very lucky. 
My chemo nurse said that it’s only about  1 in 20 who cold cap managed to keep their hair. I just persevered with it for the 6 cycles, It’s uncomfortable but manageable after about 20 mins. 

Fingers crossed that happens for me I am off to buy some now haha thank you so much for your answer. Xx 

Wishing you all the luck its  hard I’m not going to lie, but do what your body tells you and don’t push yourself, us woman are programmed to just keep going, if you’re tired just rest and eat when you can because they’re maybe days when you just can’t face food.