@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.
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Hi
Iām 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 Iāve had a pathological complete response. Still some massive hurdles to navigate but Iām 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 (Iām 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.
Iāve 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 thatās 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 wasnāt as effective because the nurses didnāt 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. Iāve 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 Iām grateful for every single one of my curly, pube-like hairs!
I donāt want to sound patronising but Iāve 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. Itās ok to have good and bad days, both physically and emotionally, to hide when you need to and to connect with others when itās 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.
Iām 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
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Because this is a HER2+ve thread, I thought Iād write about this weekās trip for a āresting heart scanā. If we are on Herceptin or a related product (mineās Phesgo) thereās 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 anybodyās not been yet, itās far easier, in my view than an MRI scan - donāt 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!! ā¦ which felt a bit weird.
You have to put both arms up above your head during the scan. That wasnāt 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 itās 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 wonāt have been my last scan of this kind. Anyone else having them?
Iām sorry you had such a frustrating experience, it makes me so mad when people canāt communicate, it makes such a difference. All we want is to know whatās happening, it doesnāt matter if itās a delay, at least you know and can make an informed decision. Not sure if itās denial or ignorance on the part of companies/service providers but it always makes it worse to try to hide/ignore issuesā¦!
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Hi @rkj,
It sounds like weāre 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
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 wonāt work well.
Iām 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, itās so helpful. 
Hi buddies
Iāve just got back from my consultantās appointment and now I have my bone and body scans booked which will take place at some point in the next 2 weeks. They havenāt told me anything I didnāt already know which is that it is in 2 of the 3 lymph nodes they took so now they are taking the rest out, BUTā¦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?
Iām a mess again.
Thanks guys,
Sal
x
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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
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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 didnāt find anything and it hadnāt spread, so please donāt 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 donāt do so you will get answers.
If you are struggling try getting some support from MacMillanās 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 doesnāt necessarily mean you will get bad news.
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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
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Hi Sal,
I too spiralled before mine and getting the results. Every little twinge meant I was riddled with it. It really didnāt help that my stress was manifesting itself physically- I had a locking ankle and restless leg, a numb armā¦ 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, donāt internalise it. Even if just a friend or family, doesnāt have to be a professional. Have a rant and get it out, theyāll be happy to listen. Have you been assigned a BC nurse yet? You can and should also reach out to them.
XX
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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 canāt change the results we just have to get on with it. I had 4 x ec but refused the paclitaxel so wasnāt 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
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Hi @salbert
Iāve just asked how you got on on another thread.
Iām sorry youāre having more surgery, the positive you only have to wait 2 weeks for it. I canāt comment on spread as I had clear lymph nodes. However, it doesnāt stop your mind wandering. Iāve had a lump in my neck for sometime and just assumed it was fat. I still havenāt asked anyone if it should be something to be concerned about. Then I did think Iād 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 couldnāt ask. Probably nothing but will feel better if I check.
I hope you have a relaxing evening and sleep well
Thank you, thank you, thank you my friends. It helps to know the spiralling mind is normal. This is agonising and we all go through it.
I started counselling a few weeks back. I have my 4th session today. Iām doing relaxation apps too. Iāve also been given Mirtazapine and Zopiclone so I am well supported.
Iām hoping today will be a good day.
Love to you all and thanks once again for the support.
Sal
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I was diagnosed with DCIS and a small amount of HER2+ cells in my right breast back in the summer. This was found after an annual mammogram (I am on yearly follow up after having a mastectomy in August 2020]
I had surgery first at the end of July and then started Paclitaxel and Herceptin in October. I had two allergic reactions to the Paclitaxel so I switched to Abraxane. This was given every three weeks. Yesterday I had my last dose of Abraxane, so just the Herceptin injections going forward.
Lots of people have written here about the side effects they had with chemo. It does make it sound very scary. I was apprehensive before starting, but it has been ok. I have worked throughout, just finishing early a couple of times when we were quiet. I work as a science technician in a secondary school.
The main side effect I have had has been muscle/joint pain in my legs. This has been manageable with paracetamol. I have had a couple of instances of upset stomach but I never had to take any medication for it. I also have a very small amount of peripheral neuropathy in two or three fingers. I am hopeful this will recover now the chemo has finished.
I am going for my next heart scan next week. Someone further up the thread talked about their experience. However my last scan was an ultrasound scan, just like you may have had in the breast unit. I donāt recall having to fast beforehand (though I will read the appointment letter closely now).
Wishing you all the best going forward with your treatment
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Thatās really encouraging. I so want to continue working.
Itās so strange to feel completely well yet know something nasty is inside you and that treatment can make you unwell.
Thanks @scientistamafier
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Hello Her2+ buddies,
I saw my new oncologist this week and am due to start chemo in the next week or so. He also dropped another bombshell that he wants me to have 3 weeks of radiotherapy afterwards & said that would take 6-8 weeks to recover from and is 40% likely to cause some problems with my implant - just the gift that keeps giving!! So very disappointed that the 3 months I thought I had to get through has now doubled!
Thanks to all of you who have already been through this for your advice and details of your experience, itās very helpful to us newbies.
Has anyone tried the ice mittens and boots to try to dodge the peripheral neuropathy? Iām not great with the cold at the best of times, so not sure how that would go alongside the cold cap!! Also looks like it would make it impossible to read a book to pass the time.
Iām back to having trouble sleeping, so the magnesium isnāt making much difference, just wish I had a switch that could turn off all these crazy thoughts zooming around my brain in the middle of the night! I will have a look at your recommendations @Tulip29, I am definitely a long way from calm.
Hope you can all enjoy a nice weekend. Meal out with my family tomorrow night for me while I still can xxx
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Hi @lmd1 I tried cold slippers on my last chemo as have started to get some peripheral neuropathy from cycle four onwards. Hard to say if it is working but it doesnāt seem to have got worse so I am sticking with it. I have used sucking on ice cubes during chemo since cycle three and found my taste, although bad, is not as bad as cycles 1 & 2 so I am willing to give any ice therapy the benefit of the doubt.
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Thanks @frazzledmcsazza, itās just so difficult to know how your body will react isnāt it? Good to have more tips xx
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I looove your attitude! It will be 5 years for me this September. Five more on letrozole. 