HER2+

Sorry to hear of your diagnosis, but this is a great site for support. I have just finished chemo and have surgery in a couple of weeks. I have been blogging as it has helped me to write it down as I got and you might find this useful.  chemo was nowhere near as difficult, as I had feared, I worked throughout and managed relatively well.  Best of luck 

community.macmillan.org.uk/.../one-life-live-it

Hello , my IDC its Her2 positive also. I had mastectomy in March , then 12 weeks of Chemotherapy every week , i used cold cap all this time while on Chemo and saved 50% of my hair . I know how hard it is in the beginning to profess all this new challenges. Chemotherapy its not as bad as many of us thinking , but you will see some changes in your body (test, sleeping , tiredness) but all of this its doable, so many people already face this and so many of us waiting to start. You just believe and be positive you will do it , if i did and somebody else did you will be ok too. Mindset its very important…dont wait for side effects i have almost none of them and what i had was very mild and all my chemo journey i did work part time. I wish you best of luck … x

Sorry to hear this - I completely get it’s all just such a shock to get a diagnosis. There is so much to think about. Try and do as many nice things as you can before the treatment starts to take your mind off things if that helps as well. 

I’m her 2 positive so had to have chemo. Ive done the cold cap so far and I’ve just completed 3/6 chemo sessions - it does seem a big mountain to climb at the beginning but once it all starts it does start to feel you are getting somewhere.  it’s is daunting but it is all doable and I must admit not quite as scary as I thought or built it up to be in my head. Happy to answer any questions on my experience so far if it’s helpful.   But like the other people have said so many of us are (sadly) having to do this but we can do this and you will get through it. Your not alone.xx

I really like reading your blog - thanks for sharing. It so helps to read how other people are managing through it and helps me to think I can do this xx

Hello!

I too have just been diagnosed IDC triple positive, so was very interested to hear the responses to your initial questions on here.  So many questions but hopefully once treatment starts then the "unknown" now becomes easier.

Good luck on your journey

Hi GlenysJ. Also hope you are doing ok with your treatment so far Cheerful lady. 
Im now a week post chemo no #4 - 2 left to go.  Have been doing cold cap but bought myself a wig today and really pleased how real it looks. I still have a bit of hair but cold cap hasn’t worked quite so well for me - however every little helps so they say so will keep going.   Had my first round of Herceptin this session so think I’m over the fear of how that will be administered now. Don’t get me wrong I’m not enjoying chemo or the way it makes me feel but I do think sometimes my fear of the unknown has really made things so much harder. Think this last chemo was the first time I didn’t  cry going in! Mind you I’ve moved to a satellite unit which is just so much nicer as not in a big hospital setting. Has anyone else felt the same about the fear of the treatment. 
hope everyone going through treatment is doing ok  .

The fear of the treatment is always awful. Also as you start you see what side effects you personally get, and trust me they can vary dramatically, and try and mitigate them. For example, my first round I had awful acid reflux which in itself was terrible and also increased my nausea, I was also horribly constipated, by second round I’d added in omeprazole daily throughout and daily lactulose and those side effects were dealt with (by and large) I actually found that round more manageable. I also spoke to the chemo nurse who tweaked my steroids, if you tell them what you’re experiencing they can help and also posting a side effect on here will get you a ton of information on how to mitigate it. One thing I’ve not cured yet is the insomnia I face, tried everything! Yet my friend who is on the same chemo code can’t stop sleeping! Once you know what chemo actually means for you, you’ll have a better idea of how to face it. 

I didn’t use a cold cap as I didn’t want to spend longer in hospital and although it works for some I knew it doesn’t work for everyone and can be very uncomfortable so I can’t help you there, I lost my hair which, for me personally, was upsetting but I’m ok with it. It’s a short term issue, it also makes people socially distance from me which I appreciate!! Xx

Hi there, I’m HER2+ and have just had a mastectomy following 6 rounds of FEC-TPH chemo.  I was keen to try the cold cap initially, but it was removed after just a couple of hours.  While wearing it it triggered a really bad migraine which lasted for 2 weeks after, so only just cleared before round 2 of chemo. I was hugely disappointed at the time and rushed out to buy as wig as although the centre were willing for me to try again, I didn't feel I could cope with another long lasting migraine in addition to the chemo side effects.  Maybe try it & see if it works for you?  I’m now 6 weeks after my last chemo and over the last couple of weeks my hair is growing back well now. I used a variety of wigs/hats through chemo but I am excited to see my hair growing back well now - I cant wait for it to grow long enough for me to feel confident to go out without a wig/hat.

 I used the NHS voucher to get a longish synthetic wig close to my usual hairstyle.  I have to say I’ve found it difficult to look after & would probably go for a shorter style if i need another one.  I did also buy a couple of cheap (less than £20!) wigs from Hair Cube on Amazon and they have been amazingly good. I have also bought a hair halo (kind of a half wig that you put a hat on top of) which has been comfortable & cool to wear in hot weather, and also a fringe wig which slips under hats. When my hair was shedding my scalp as extremely sore and wearing a wig was unbearable, hence the fringe wig with hat look for a while.  A few drops oft tea tree oil mixed in with shampoo and left on my head for a few minutes  helped with scalp sensitivity enormously.

Sorry, I’m new to my diagnosis so don’t know the acronyms yet. What is ‘IDC’ please?

I’m feeling this fear greatly at the moment. I will shortly be having surgery first, followed by radiation and hormone therapy, and then a combined chemo as the cancer is both ER+ and HER2+. Trying to come to terms with it all, and feel powerless.