IORT - an alternative to think about as part of your Breast Cancer treatment plan

Hi  and a very warm welcome to the online community

That's great to hear how successful your treatment has been, although I won't pretend to understand everything you've written. However, if you join the breast cancer group I'm sure the people over there will :)

To join just click on the link I've created and then choose 'click to join' on the page that opens. You can then introduce yourself and post after selecting '+New' or '+' (depending on the device you're using) and join in with existing conversations by clicking on 'reply'. 

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x

Hi London2020

i saw on the “Ask a nurse” section of the Community that you were finding it difficult to find someone else having the same chemo treatment as yourself ie 12 weekly doses of Paclitaxol alongside 18 Herceptin injections.  I went through this earlier this year and I’ve a similar diagnosis to you (stage 1, Grade 2, 18mm tumour, ER+, PR+, HER2+, negative nodes).  This treatment follows on from the APT Trial.

Paclitaxol is usually well tolerated (my oncologist described it as a gentler form of chemo!) and I didn’t get any nausea or nail issues - just a couple of days after treatment I was wiped out, but then felt fine. I was able to use the cold cap and kept my hair which was brilliant - I’d definitely recommend giving it a try.  One issue with Paclitaxol is the risk of peripheral neuropathy so definitely let your team know if you start to feel tingling or numbness in your hands or feet and they can monitor you or reduce your dose.  I’m still suffering from numbness in the balls of my feet 5 months after finishing and with nerves taking a long time to mend it could be up to a couple of years before I get feeling back.

if you want to talk more, please don’t hesitate to get in touch and I’d be happy to chat about my experience or answer any questions.  The IORT you had sounds great - thanks for sharing!

Loffie xx

Hey Loffie,

Thanks so much for taking the time to reply. Its so reassuring to hear from someone who has undergone the same treatment, you are the first for me! Like you my Oncologist describes it as gentle chemo, and hearing your story provides me with more confidence that this could be the case. 

Do you have any tips for cold capping? I 100% intend to do this and just bear down thru whatever the unpleasantness turns out to be with the goal of keeping my hair!

Thank you too for the reminder to be aware of neuropathies signs ... 5 months on you are still suffering, that must be quiet a challenge with it being the balls of your feet!

Thanks again for your reply, Ill be starting treatment this Friday, so won't make any big plans for the weekend haha

Thanks :)

I found the cold cap much easier than I’d read about. The only downside is that you’re in the hospital for longer. I seem to remember I had my premeds (steroid, antihistamine, anti acid) then had the cold cap fitted for 30 minutes before the chemo started, and for 45 minutes afterwards.  I found it cold for the first 10 minutes or so before I got used to it, and it was only towards the end that I was dying to get it off!  Just make sure that you get the correct size cooling cap and cover that goes over it. Take the time to get this right as you need to make sure the cooling cap is in contact with your scalp.  I mostly had the same experienced person doing it every time, but had to get things adjusted sometimes if anyone else did it. Be proactive!!

I suggest you wear warm clothes - I took a big fleece to wear, and also asked for a blanket for my legs most weeks. I also purchased the Paxman shampoo and conditioner which is formulated specially as it’s mild and free of preservatives.  I still have loads left so if you happen to be around the Surrey area I could get it to you!

I’ve just found the Paxman Scalp Cooling leaflet and here’s a few other things they say:

- It’s important that the cap is touching the crown of your head

- you should feel the scalp cooling evenly throughout the scalp. If you don’t, let the healthcare professional know straightaway

- if you have thick braids or hair extensions, please remove them before using the cooling system (I’ve had short hair for years so this was fine for me)

- avoid harsh hair treatments like colouring, extensions, braiding, curling, straightening (I still haven’t coloured mine - am embracing the grey!)

- brush hair gently and shampoo less often with lukewarm water and a sulphate-free shampoo; style with fingertips (I washed my hair just once a week rather than every other day)

- moderate hair loss (30-50%) is expected (I did increasing lose some hair, mostly from the crown, but nobody would notice. You’ll probably lose your eyebrows, eyelashes and all other body hair but it does grow back!)

Just be gentle with your hair at all times and fingers crossed you’ll be fine.

Just checked my diary for other side-effects I had while having the Paclitaxol. I had treatment on a Thursday and was fine on Friday, but Sat/Sun were my worst days.  Towards the end of the 12 weeks, this extended to Monday too.

I had quite a few nosebleeds and the occasional dodgy tummy and sometimes got a bit of heartburn. Don’t be worried about phoning the Macmillan hotline or whatever other number they give you if you have any doubts about your side-effects.  They’re there to help alleviate your worries when you don’t know what’s normal and what you should be worried about.  My first few weeks I felt I was calling them all the time!

Hope that helps!  Wishing you all the best for Friday - it will go better than you’re probably anticipating now.  If you have any further questions now or during your treatment, please feel free to Friend me and I’ll happy to speak on the phone if you like.  Good luck!! 

Loffie xx