Hi Helen, I'm Clare. I'm 48years old and last July I found out I had grade 3 breast cancer. I had a mastectomy in September 2023. I started my 6 rounds of chemo in November 2023 and finished them March 2024. I didnt have the cold cap as I suffer with migraines so I sadly have lost all my hair but I know it will grow back eventually. My first 3 rounds of the chemo were not all that bad tbh, I had only a little bit of sickness but the hospital gave me plenty of anti sickness tablets. My last 3 rounds of chemo weren't that good tho, I kept getting infections and it made me feel very tired. I've got nerve damage in my toes and fingers at the moment through the chemo. Chemo is not that nice at all but at the end of the day I knew I had to have it. I know exactly how you are feeling as I have been in the same situation. I was not told that it can affect my finger nails or my feet though. I've just finished my radiotherapy the end of May, so all my treatment has finished now and hopefully I can start to recover from everything.

Hope your chemo all goes well for you and if you want to chat I'm here. 

Good luck and best wishes 

Clare xx

Hi Helen,

My wife has Paclitaxol, which is similar to Doxetaxol (both are Taxanes). She was tired from it, but found it much more tolerable than the chemo she had before (Epirubicin and Cyclophosphamide). She also had Carboplatin after a relapse, and found this really bearable. I had to say I've never heard of these drugs being given together, but I'm not a doctor.

There was a trial that used just a Taxane and then drugs specific to the HER2 receptor, that you might like to discuss with your oncologist: https://www.cancernetwork.com/view/a-generalized-approach-to-first-line-her2-positive-breast-cancer-treatment

My wife tried the cold cap, and stubbornly persisted despite finding it very painful. In the end she started to lose clumps of hair so gave up.

On a positive note, if you've got to have breast cancer, the more positive receptors, the better! Some women who are stage 4 can go for 20+ years on receptor targeted treatment!

Hoping for the best outcome for you.

Cheers,

Andy

i didn't use the cap--lost hair and it came back. First treatments are easier--chemo is additive in nature and effects will be worse as you go.  Find what ever will stay down--during those first few days--and don't worry about diets.  I chose fried rice--it stayed down.  Good luck--it is not fun--but you can get through it.

Hi Helen

I  was diagnosed in 2016, had mastectomy, 6 rounds of docetaxel and carboplatin, 18 of Herceptin. I was only sick once after the final chemo round (Psychological I think), the worst side effect was a metallic  taste in my mouth which made eating difficult. Herceptin was much easier, I did use the cold cap- painful but I didn't lose all my hair. Now on Tamoxifen (10 years, three to go) Everyone has a different experience of treatment I suppose, but for me it was bearable, the chemo nurses were great- calm and reassuring.

Good luck for Friday and beyond.

Hi Helen, I'm sorry you find yourself in the club no one wants to belong to, but we're all here to help each other along the way. I was diagnosed last summer with Grade 3 IDC, ER negative, HER2 positive. I had 3 x EC and 4 x Docetaxel after which there was no sign of cancer on MRI, this was confirmed after a lumpectomy and lymph node clearance, and I have just completed 5 days of radiotherapy. I have had 10 of my 18 Phesgo injections. There is light at the end of the tunnel! I found EC quite tolerable, Docetaxel was a bit harder but still doable. The worst side effect for me was that my food tasted awful, especially for about 10 days after each treatment, which made me really miserable. But I hardly had any pain, nausea, sickness, etc. But of course we are all different. As someone else has pointed out, there are lots of ways to treat triple positive BC and I hope it all goes well for you. My advice would be to stay active (I started walking every day for 20-30 minutes or more as soon as I was diagnosed), even if you feel really tired as exercise will energise you, and eat as healthily as you can. If you're interested, I have a blog on the Macmillan site https://community.macmillan.org.uk/cancer-blogs/b/carried-on-eagles-wings. Feel free to check it out. Sending lots of good wishes your way. You can do this! God bless, Amy xx

Thank you to everybody for all your advice and support. I had my first round this afternoon and coped with it okay. The cold cap was weird for the first 30 mins but after that was more than bearable. I just got v cold halfway through. First step taken which feels good after all the waiting and stress over the last 6 weeks from diagnosis.

Thank you for sharing your journeys, experiences, thoughts and feelings, Hearing from people further along has been so encouraging that you can move through the various stages and come out the other side, particularly when the mountain to climb feels so high.

Hugs and best wishes to all of you.xx

Helen 

well done first one over just remember every one done is a closer step to finish line 

look after yourself take it easy love Lara x 

Hello, I’m also Helen, age 47, and facing a similar treatment plan to you - found out yesterday that my HER2 is borderline positive so the plan changed from surgery/radio to chemo first. 

So many other similarities too - my mum died of BC aged 51 and my grandmother had it too. I have sent off the family history questionnaire but didn’t qualify for genetic testing before simply because my family isn’t big enough so there aren’t enough cases. 

Well done for getting through your first round of chemo - I hope you are feeling ok. Must admit I’m dreading it…

Hi Helen. So sorry to hear about your diagnosis. I hope you're coping as best you can with it all. Gosh, you're right, our journeys are v similar, so sorry to hear about you losing your Mum so young as well. I've found the old demons are a lot closer again, being triggered by current events. Having said that, the understanding of BC is much deeper and the research done has changed treatment plans.

The change of plan from surgery and radiotherapy to 4 months of chemo first really threw me, made the route to bring cancer free a bigger mountain to climb, but can see the sense in it, and it gives me the best chance of staying recurrence free.

Do you have a date for when your treatment starts? I found the waiting every step of the way was the worst and it feels better to get going with it all, however scary. The first week has been tough as I had a reaction to the bone marrow injection the day after, and every day is a learning curve, but I'm seeing the Oncologist on Tuesday to discuss how it went and hopefully some adjustments can be made to improve it. I've also kept a diary of symptoms for each day, which I'm hoping will help me get ahead for the next round, knowing what's coming as you move through the week.

Sending you a big hug for what you've already been through and for what's coming too. We're strong women, we can do this and will come out the other side.

Here if you ever need a chat.xx