HER2+ and need some buddies

[plum1]

Hi @salbert, I’ve been directed over here by @naughty_boob from the September chemo starters thread. Am triple positive, was diagnosed in August at the ripe old age of 37! I have a couple of 2cm lumps in my right boob and it made it to my lymph nodes, hence the chemo.

The following weeks passed in a completely anxious blur until I started chemo on Sept 21. I get it. I’m a planner and an organiser and I had nothing to control. And was totally overwhelmed by information. Once I started, it was so much more manageable, a known quantity, there was a routine and something to get on with, and count down. I had 4 lots of EC fortnightly, and am now on 12 weekly paclitaxel, 5 more to go and finishing Feb 1. Then lumpectomy, radio as needed and Phesgo until November ish. And then…whatever else I have to throw at it.

I do want to echo @suedot and say everyone’s journey is different. I have found it super helpful to hear from everyone else- but I know that it has also caused some additional anxiety as I’ve then sat there assuming I’ll experience the same, and it kicked off a bit of paranoia and catastrophising with every little feeling, temperature check, etc.

I’m not finished yet, I know, but I feel really luck to have had quite a smooth chemo journey, I cold-capped on EC but lost most of my hair anyway (it’s a harsh mix, was probably inevitable) and I abandoned it after the first pacli as it became too painful with hardly any hair to buffer. I haven’t shaved as liked having a bit of contrast and don’t have any patches, it’s just super thin. By some miracle, I still have my eyebrows, and no nail issues (yet). I had constipation on EC and then it’s swung the other way on pacli, but that’s been the worst of it. I have loperamide too but try to avoid taking it if I’m at home as it makes me really gassy/burpy and that’s equally unpleasant.

Definitely do the LGFB courses, you can do them online if there aren’t any locally. I did the nails one before Xmas and they sent me a goody bag with Essie treats, think the make up one does similar, I’m going to do it in Jan. The ladies on my call were all at different stages, and it was really lovely, made me quite emotional to hear from people further along and out the other end! Felt so supportive and the lady leading it was a BC survivor herself.

(Sorry for the essay!) Sending hugs xx

[frazzledmcsazza]

Hi @salbert I too have been referred by @naughty_boob from the September starters. Sorry to hear how you have been feeling. I think we all start this journey alone and then slowly find our tribe through these forums. I got diagnosed with HER2+ in August and have started with Chemo with surgery to follow. As others have said we are all a bit different and have different treatments. Having said that I am finding the advice, shared symptoms, sympathy and humour from my fellow September starters has really helped get me through this. I am five cycles in with one to go and at various points have thought I just can’t do this. But we have no choice and time inevitably passes and so we do manage to do this. @salbert it will be hard but you will face every challenge, every appointment, every bit of news and you will get through it. Hopefully having some of us along with you will make it a bit easier. Undoubtedly in a few months you will be the one helping someone else on their journey. I hope you get some positive news on the 4th and a clearer idea of next steps. Until then take care, smile when you can and cry when you need to. You’ve got this. You just don’t know it yet.

[wildflower]

I found out I had cancer on 13th December.
Time seems to be going really slowly while I wait for my last biopsy result.
I too have felt invinsible,but this is slowly fading,due to fear of the unknown.
You will get through this and end up a stronger person for it. So will I.
We can do this.

[salbert]

Hi @plum1 @frazzledmcsazza and @wildflower

Thanks so much for your input and @naughty_boob thanks so much for gathering more troops. That alone makes me feel stronger as there are so many of us going through this so naturally you don’t feel so alone.

@plum1 - I, too, am an organiser, a planner and a massive catastrophiser!! So mentally this is a struggle. I have decided to make a Positivity Document of all the really positive and hopeful statements I have heard or read to remind myself when the brain starts to spiral. Like @suedot I appreciate you saying that everyone’s journey is different as sometimes I have been gripped by fear just reading what someone else has been through so it is important to bear that in mind. It’s great to hear that you have had quite a smooth chemo journey.

@frazzledmcsazza - Finding my tribe has become something of a lifeline and I’m not letting you all go! It undoubtedly helps and your positive words of encouragement about getting through will be going on my Positivity Document. I know how much it means to me that you have taken the time to answer this thread so I vow I will do the same for others who have this bolt out of the blue coming.

@wildflower - You’re right. Time is going slowly and fear of the unknown can send you to some very scary places. I spoke to my aunt last night who is in her 80s and living with incurable cancer. She has just booked yet another holiday and said to me ‘You’re a Jetten (family name). You get on with it. Cancer isn’t the death sentence it used to be. My oncologist said to me “Cancer doesn’t like being ignored” so you get on with your life and only visit it when you have to.’ She was so no nonsense that something clicked and I went to the New Year’s Day party at my parents house and ate and drank and genuinely enjoyed myself. That quote is also going on the Positivity Document.

WE CAN DO THIS. WE WILL DO THIS. WE WILL GET THROUGH THIS.

Big love to you bloody brilliant women.

Salbert
xxx

[salbert]

By the way, if you haven’t already twigged, I can be full of joy and positivity one moment and a hopeless heap on the floor the next. I apologise for the latter as I will undoubtedly be on here in that state over the next few months.

[naughty_boob]

Hi @wildflower

The waiting for results is probably the hardest thing you will go through. The unknown. Once you have your results and a treatment plan you will know what is happening and when. I not saying the chemo with Herceptin/Phesgo is easy but you will get through it. I did and so did many others please look at the chemo starters each month, you will read the support given to each other. As well as side effects and how they are overcome.

Take care

[naughty_boob]

Don’t ever apologise for being ‘hopeless on the floor’, we have all been there at some point and we are here to help and support you when you need it.

I, too, like to plan and know what is happening, I’m a glass half empty girl and think of the consequences of everything or the ‘what ifs’ which isn’t the most positive attitude. But I can’t change who I am. I did some CBT once and all it came down to was I need to change my thoughts, which of course is who I am, therefore change me! It wasn’t just about strategies for dealing with things but changing how I thought about it, seeing the positive in everything. Which is quite hard when you’re a glass half empty person. It appeared to me that you have to be a glass half full to think the ‘correct’ way. I’m trying to see the positives in things but it is hard with cancer treatment.

I been to the cancer centre 30 miles away in Cardiff, I turned up on time to find out the radiation that needed to be injected for the MUGA scan hadn’t arrived from Birmingham. No phone call from them to say they would be late, assumed it was the weather. They arrived 1 hour late with no apology, just said they had to go to a different pharmacy. I was there for 3 hours for a 30 minute scan with 2 injections, 39 minutes apart, taking less than 5 minutes each, should have been a maximum of 1- 1 1/2 hours. I was gone for 5 hours! The positive was that I popped to a local Waitrose and treated us to something different for dinner and I drove myself. Furthest I’d driven in 4 months on my own!

Thinking of you all

[frazzledmcsazza]

@wildflower sorry to hear you were recently diagnosed. I just want to echo @naughty_boob. By far the hardest time mentally was the wait for diagnosis and a treatment plan. Mentally I found things easier once the treatment had started. Hopefully you will too.

[rkj]

Hi

I’m 43. Was diagnosed in April '23 with IDC Er & Her2 positive, 2.7cm tumor. I did 4 rounds of EC every 3 weeks then 12 weeks of paclitaxel. Just had 7th phesgo injection yesterday, and will have 3 weekly until August. The neoadjuvant approach shrank the tumor so I had a radiological complete response.

I had a lumpectomy on 20th December and am waiting for results. Definitely not a great headspace to occupy but this is to give you hope that the rest is doable! Fingers crossed I’ve had a pathological complete response. Still some massive hurdles to navigate but I’m still putting one foot in front of the other everyday and doing what I can to be as healthy and happy as possible.

I worked full time (I’m a social work manager in a local authority) from home throughout chemo. My work have been amazing and that support has made all the difference as it gave me a distraction from being entirely consumed by all things cancer and treatment related. If you can work to your energy, sleep and rest when you need to, listen to your body, and have people who understand how important that is, balancing work and treatment can be an option for some.

I’ve needed some counselling and would really advocate accessing it if you think it could benefit you. I found it helps having someone independent to speak to about the stuff that’s too much to share with the people you love most in the world.

Phesgo has been the easiest bit of active treatment and I have hardly any side effects at all. I did cold cap and sadly lost most of my hair (think Gollum!!) and it was, for me, one of the most traumatic parts. I think the cap wasn’t as effective because the nurses didn’t use the right size cap the first time I had EC (they only had one small one on the ward and someone else was using it) but I know some people have great success with it. The positive bit for me is that carrying on with the capping really helped my hair grow back fast and thick. It started to grow just before I finished paclitaxel. I’ve been finished chemo 8 weeks and have a good 3 inches of hair. It is super curly so does look I have pubes (as someone kindly told me on xmas eve!) on my head lol. But I’m grateful for every single one of my curly, pube-like hairs!

I don’t want to sound patronising but I’ve come to recognise how important it is to approach all of this with self kindness, as it is so much and so difficult some days. It’s ok to have good and bad days, both physically and emotionally, to hide when you need to and to connect with others when it’s right for us. I think it is important to acknowledge that although altered by our experiences, the fear, the anxiety, the uncertainty and sadness, we are still the people we were before all this but with a greater wisdom, appreciation and grace.

I’m humbled by the dignity and kindness and determination I read in every single one of the posts on here. You are all amazing.

Wishing speedy recoveries, love, hugs, good news, the best treatments, kind treatment teams and best wishes to everyone that needs some, or all, of the above. Xxx

[suedot]

Because this is a HER2+ve thread, I thought I’d write about this week’s trip for a ‘resting heart scan’. If we are on Herceptin or a related product (mine’s Phesgo) there’s need to keep an eye on our hearts and make sure they are continuing to pump as efficiently as ever. I go every three months and today was my 2nd time visit.

In case anybody’s not been yet, it’s far easier, in my view than an MRI scan - don’t have to get undressed, lie on your back, quicker and the scanner arm only goes over the chest area - so not enclosed like MRI. All that said, there is the need to fast from food (not drink) for 4 hrs beforehand and then have a small amount of radio-active substance injected 40mins before the scan. Then you have to eat between that injection and the actual scan - I bought some egg mayo sandwiches in the hospital shop on my way in today, but then with an appt at 9:40 I effectively ended up having these as my late breakfast!! … which felt a bit weird.

You have to put both arms up above your head during the scan. That wasn’t too comfortable when only 2 weeks post surgery!

I hope nobody minds me describing all this, but I recall before the first time I was quite apprehensive because I knew so little of what to expect and in my area it’s done in the Nuclear Medicines unit which is at a totally different hospital than any oncology or breast care unit appointments.

Given traztusumab is for 18 doses, this won’t have been my last scan of this kind. Anyone else having them?

[plum1]

I’m sorry you had such a frustrating experience, it makes me so mad when people can’t communicate, it makes such a difference. All we want is to know what’s happening, it doesn’t matter if it’s a delay, at least you know and can make an informed decision. Not sure if it’s denial or ignorance on the part of companies/service providers but it always makes it worse to try to hide/ignore issues…!

[plum1]

Hi @rkj,
It sounds like we’re on a very similar pathway, right down to Gollum I cold-capped through my 4 EC and first Pacli, then abandoned- you give me hope re: the regrowth! x

[naughty_boob]

Thank you for sharing. I love the Gollum comment. I was lucky to keep most of my hair apart from a couple of patches. The fitting of the cap is so important. I watched the videos and ensured the did it properly each time. The nurses are very busy but the time booked includes your cold capping so they should do it properly. Wrong they only had one size small cap, too large and it won’t work well.

I’m so glad your hair has grown so well since cold capping, another good reason to give it a try.
Thank you for sharing your experience, it’s so helpful.

[salbert]

Hi buddies

I’ve just got back from my consultant’s appointment and now I have my bone and body scans booked which will take place at some point in the next 2 weeks. They haven’t told me anything I didn’t already know which is that it is in 2 of the 3 lymph nodes they took so now they are taking the rest out, BUT…now I am having a total mental meltdown. I am terrified it will be in other organs. I have my next op booked for 16th January.

I know that everyone gets terrified about the results of the body and bones scans. How the hell did you get through this? My head is mush.

Did anyone find from the scans that is was somewhere else in their body and, if so, did the chemo and Herceptin treatment cure it?

I’m a mess again.

Thanks guys,

Sal
x

[salbert]

Hi again everyone

Sorry for my crazy post just earlier. I have just read the posts above that people have done over the last couple of days and yet again you give me a lot of hope. I think that scans are a standard procedure and that most of you have been through it.

This is so tough.

However, Gollum did raise a smile. Thanks for that.

Sal
X

[frazzledmcsazza]

Hi @salbert sorry to hear you are having such a bad day. When I was first diagnosed I was sent for a PET scan as I thought there was pain in my ribs and the surrounding area. I was convinced it had spread and I was stage 4. I was wrong. They didn’t find anything and it hadn’t spread, so please don’t give up hope. I spent a lot of that month crying and doom scrolling on various internet sites. This is the hardest time. Cut yourself some slack and just go with your emotions and keep as busy as you feel able to take your mind off it as much as possible. The days will pass no matter what you do or don’t do so you will get answers.

If you are struggling try getting some support from MacMillan’s the nurses on their helpline are great and I think they can also help you get some counselling.

Stay strong. Just because you are being tested doesn’t necessarily mean you will get bad news.

[salbert]

Hi @frazzledmcsazza

Thanks for your reassurance. I guess I will know by the end of this month.

Thanks for answering because today has been bleak.

Sal
Xx

[plum1]

Hi Sal,

I too spiralled before mine and getting the results. Every little twinge meant I was riddled with it. It really didn’t help that my stress was manifesting itself physically- I had a locking ankle and restless leg, a numb arm… I was convinced!

My BC nurse suggested investing in some Kalms just to take the edge off and it did help- both my mind racing and then in turn improved/reduced the leg/arm nonsense.

Try to talk to someone about your concerns, don’t internalise it. Even if just a friend or family, doesn’t have to be a professional. Have a rant and get it out, they’ll be happy to listen. Have you been assigned a BC nurse yet? You can and should also reach out to them.

XX

[Tulip29]

Hi salbert, just reporting in as another member of the her2 positive club. I remember how devastated i was when first given the news but i booked a counselling session with the nurse at my local cancer support centre and that helped a lot. We can’t change the results we just have to get on with it. I had 4 x ec but refused the paclitaxel so wasn’t allowed to have phesgo. I had mastectomy in sept and have now started herceptin and letrozole. Although i was her2 positive on biopsy my tumour pathology came back as her2 negative! Getting your head in the right place is the very best thing you can do to help your body. I found mindfulness, counselling, qi gong, reiki all helped me to go from a state of agonising despair to now having a calm and almost empty mind. I am a changed person and feel much more relaxed than at any time in my life. I wish you all the very best. Sending love and hugs from Tulip xxx

[naughty_boob]

Hi @salbert

I’ve just asked how you got on on another thread.

I’m sorry you’re having more surgery, the positive you only have to wait 2 weeks for it. I can’t comment on spread as I had clear lymph nodes. However, it doesn’t stop your mind wandering. I’ve had a lump in my neck for sometime and just assumed it was fat. I still haven’t asked anyone if it should be something to be concerned about. Then I did think I’d just had 12 weeks of chemotherapy and if it was something surely it would have shrunk. The problem with social media and watching others with cancer is that I found there could be a link with thyroid and breast cancer. I googled where my thyroid was and the lump is very near. I will run it past the breast care nurse when I see her next. All my appointments recently have been with someone who I couldn’t ask. Probably nothing but will feel better if I check.

I hope you have a relaxing evening and sleep well