HER2+ and need some buddies

My face went red and blotchy after first cycle of treatment. When I went for the second cycleI was told it was chemo acne. Prescribed Cetraben cream to wash with. It’s bloody marvellous. Athena bottle lasted 9 months. Have purchased another from Superdrug. It’s with the medicines rather than face creams. My skin is better than it was 5 years ago. X

2 Likes

Thank you.. so much to watch out for.. will make a note daily. X

Hi @sweatybettyhq26 We have had a discussion about zoledronic acid before on here and if I remember rightly, we came to the conclusion that it was given to post-menopausal women with early-stage breast cancer to reduce the risk of recurrence as it helps to prevent cancer from spreading to the bones. It attaches itself to bone cells and slows down the rate of bone change according to the Cancer Research UK website. I remember feeling really out of sorts at the prospect of giving up alcohol but now I find that just one alcoholic drink can give me an instant headache and I love having a clear head. You are DEFINITELY being good!! You will be a new you after this.

3 Likes

I had an oncology appointment today, ahead of my mastectomy/full node clearance next week. I had a good partial response to chemo in my breast tumour, but none in my positive lymph node.

My oncologist said that dependent on the pathology results, I will probably need radiotherapy after surgery and definitely some kind of anti HER2+ treatment. Before chemo I had been told this would be Herceptin injections. Today my oncologist was not able to say what treatment I would need, but did say it might not be Herceptin.

Have I understood correctly from my (brief) research that this may well be Kadcyla? I’m assuming there may well be residual cancer in my lymph node if there was no real response to chemo?

I know no one can say for sure until I get my pathology results, but I absolutely hate being blindsided at an appointment by completely new information and would rather have some knowledge of what might happen so that I can understand what is being said.

1 Like

@dilly I think you are not the first on here to wish you’d been told a bit more about potential alterations to a likely treatment regime. I think you are probably right with your research but others who have been along your path can hopefully tell you a bit more.

I can see oncologists don’t want to overload people with too many maybes but often it helps us to be a bit more prepared if only to know what questions to ask.

I just wanted to wish you well for your surgery, take good care as you recover, do the arm exercises as much as you feel able and I hope you’ll soon get a bit more clarity on the pathology.

3 Likes

Thank you so much @carrie5, that actually really reassures me x

I was recalled after a routine mammogram, and was so relieved that I had done some very basic research before my appointment as they obviously did find cancer and confirmed it then, even before the biopsy results. Actually being a tiny bit familiar with the term ‘invasive ductal carcinoma’ made all the difference to how I coped in the moment on the day.

So, I’d rather have a rough understanding of the alternative to Herceptin. I need time to process how I feel about potentially more chemo, rather than having it suddenly dumped on me in a consulting room.

1 Like

@dilly Hi I want to wish you all the best for your Mastectomy and lymph node clearance next week. It does sound like they could be thinking of kadcyla depending on your pathology results which could still be better than the scans show. The scans I had before my mastectomy were showing the lump had shrunk by about a third from 19mm to 13mm but the pathology was that there was only actually 1.4mm of cancer left. I also had a few cancer cells left in one lymph node so I am on kadcyla and have had 5 treatments so far. Although I am tired and have a few side effects it is not like the chemo I was on prior to surgery. Xx

3 Likes

Thank you @anb1 x

The idea of more chemo for so long is very daunting. Are you able to work?

2 Likes

I put nearly two stone on as the steroids really affected my cortisol levels and I also craved absolute junk! I’m seven months post now and I’ve lost all but a few pounds of it ..

3 Likes

@salbert I do wonder if I should have these infusions.. my oncologist was on the fence about it as I was peri menopausal when I was diagnosed and my periods returned a couple of months after stopping chemo , she said it was clear there was still “activity”

So didn’t feel it was beneficial.. Hmm

I know It is daunting. Once I got over the initial shock of it I was pleased to be able to have this if it gives a better chance of it not coming back. I haven’t gone back to work as yet but am hoping to soon on a phased return I have some ongoing gynae issues as well so am currently awaiting a procedure for that. Xx

2 Likes

Hi @dilly It’s been reported a few times that Kadcyla comes as a shock, however, the results from it are so good as to definitely make it worth it and we have some incredible women doing ultra-marathons and Iron Woman challenges on it. Most say it is nowhere near as bad as the original chemo they had. Good luck for the op.

@arty1 Well done on the weight loss. That’s inspirational to me as mine is still steadily climbing. :roll_eyes: I guess you could ask your oncologist why she felt zoledronic acid wouldn’t be beneficial to you then and see if she thinks it would be now?

3 Likes

Consultant review this morning, finally 7 weeks on get information that year 1 mammogram was fine. He looked vaguely surprised when I asked how I get to know the results of these things in future, as if it wasn’t really much to do with me! I managed to summon a smile while saying that it felt a bit like the information flows around me and I’m someone who likes to know things.

On zolendronic acid, I asked about it because it was on my original plan, I was told I didn’t reach the threshold and it wasn’t necessary. Also told I am osteopenic, from the bone density scan, so I have no idea which threshold for what, but always worth asking. Was given calci d after the bone density result which my gut definitely didn’t like and then I had a weird week where my balance was off in the evening and after taking the calci d. I backed right off it and haven’t had a reoccurrence. Told the two are probably not related but who knows.

Good luck with the weight loss projects, find other things you enjoy, we ladies need our goodies.

5 Likes

Thank you @anb1 and @salbert x

2 Likes

Congratulations on a clear mammogram result @carrie5 How nuts that your consultant would be surprised that you would want to know your results. I swear so many of these brilliant medical brains have less-developed interpersonal communication skills.

My weight loss has commenced, I am pleased to say. Not sure what can take the place of cakes. An apple with a teaspoonful of peanut butter isn’t cutting it at present. :slightly_frowning_face:

@sweatybettyhq26 Have they said how elevated? Because I had elevated kidney function at one point which sent my mind spiralling and when I asked about it, I was told it was not at a level they were particularly concerned about. They couldn’t tell me why and it did return to normal. Can you find out a bit more from them? Remember our fabulous BCN nurses on here are always available on 0808 800 6000 for those medical queries.

3 Likes

@sweatybettyhq26 really hope the query on liver function is resolved quickly, as @salbert says do use bcns here to help you clarify things. Beware google, it can be right but can also be very misleading. Organs like liver, kidneys etc can be very complex, do multiple tasks and can come up with the odd results blip that isn’t serious, so try not to go to worst case explanations. We’ve all done that at some point, our brains are going hoing to go there once we’ve heard the word cancer.

@salbert congrats on the diet, a suggestion - cake money goes to a ‘joe brown frock fund’?

5 Likes

Hi @dilly I completely understand how it feels when the doctor informs you of taking in more chemo cycles. My partner was in the same position, this time of the year in 2025. It felt like a big blow when we were informed that there was more chemotherapy in the horizon in the form of Kadcyla. Now that my partner has been through the entire 14 cycle phase of it up until December, I will share some of her experiences with you wrt work. The initial two cycles were okay for her but it brought along lots of fatigue as her platelets dropped down considerably. The third one onwards she was okay and was able to work but requested for work from home most days due to the fatigue. The fatigue hit the hardest for her some after the first 4-5 days accompanied by mild joint pain. Her liver profile started going out of range considerably after the 4th dose but her platelets stabilized so it was manageable most days. After a dose reduction things got a lot better for her. Then by cycle 7 she had another reduced dose but continued to work just fine. By the time she reached her 14th dose, she was able to work just fine batting a few days where fatigue hit the hardest. However it isn’t the same for everyone and most people in this thread have tolerated Kadcyla pretty well with some fantastic women also running marathons whilst on this chemo. However it would be better to set these expectations with your employer beforehand ( if you feel they will be supportive). I hope this helps. Good luck and remember you will get through this! Sending you healing wishes . Take good care

4 Likes

@sms thank you for the information about working through Kadcyla, and especially about side effects, very useful. Unfortunately I can’t WFH as I work in primary education. If it does end up as my treatment plan, I will need to get more information from my oncologist about the level of immunosuppression on Kadcyla. I wasn’t allowed to work through my neoadjuvant chemo because of the infection risk from small people!

Thank you to everyone who has replied to me. It really helps to start building up information now about a possible treatment, rather than being caught unawares at an appointment. I have lots to think about…not least because I have read that peripheral neuropathy is a side effect of Kadcyla, and my final chemo cycle was cancelled because I already have grade 2 neuropathy from Docetaxel.

3 Likes

Great news about clear mammogram. Shame they couldn’t be more informative about results for future ones.

@sweatybettyhq26 I have elevated liver results after being hospitalised having multiple iv antibiotics and then aciclovir in tablets form for a mega cold sore. Took a couple of weeks to settle down. The aciclovir was just too much for my liver to metabolise. At the time the doctors didn’t think it was that but once I stopped the tablets and went onto the cream, the levels slowly reduced. So you never know if it just your body and paracetamol and ibuprofen or even a drug given during your surgery. Hope they repeat your bloods and it resolves and you can start your chemo.

:smiling_face_with_three_hearts:

2 Likes

@farli you should be able to see and post to this thread using the ‘reply’ button

:smiling_face_with_three_hearts:

1 Like