Hi everyone, been catching up on messages and am rubbish at remembering who said what so forgive no direct responses.
Thank you for the tips, always helpful to know whats working for others or recommendations.
Ive had x4 EC and due to have x4 paclitaxel. 1st paclitaxel was ok, 2nd one allergic reaction…scary but trust the nurses who were amazing. Lots of steroids and antihistamines, retried treatment over 6 hours and was ok. 3rd treatment due last week, knew I was due for all the drugs and the longer treatment, but allergic reaction again despite that.
My oncologist agreed to my trying a more expensive version of paclitaxel (abraxane), had that last Thursday with success! And guess what, no need for pre meds, no injections, no after meds save for anti sickness and only 30 min infusion!!!
I now have a 3 week break (rather than 2 weeks ive been on previously) amd then last treatment due end of sept …fingers crossed.
Ive not found one better than other, just different. On EC i felt rubbish from get go, gradually felt better after 7 or 8 days and onwards. With paclitaxel ive been ok for couple of days then downhill, lots of aches, although probably less groggy /out of it feeling. Im getting more and more tired but think that may be accumulation and also been told to expect a transfusion as blood cells so low. But im atill trying to volunteer when i can, helping me mentally massively, although probably not resting enough.
On the hair loss, i used cold cap for 3 cycles and was losing hair anyway so stopped. I shaved my head when it was thinning (and got told i looked like a baby orangutan…we have dark humour in my family!) more about 2 weeks later. I wished i’d done it earlier. I found it so liberating, and had no tears even though i thought I would. I have caps amd scarves but im equally happy being out bald (just have to be mindful of the sun, i always cover in the sun). Everyones different, but dont be scared…
For what comes next, ive now got a date mid Oct for my radiotherapy planning scan, don’t know when it will start for 15 rounds/3 weeks, but feeling it cant be worse than chemo either. So looking forward to this finishing and losing the picc line!!
Then spoke to oncologist about drug therapy, he is prescribing tamoxifen for 2 years then 7 years letrizole. I feel unsure but will try , knowing if i feel rubbish i can choose to stop. I just dont want to face the future feeling as bad as the last 6 months when ive been lucky and so well previously. My oncologist understood and was helpful and supportive to talk with.
Thanks for everyone sharing, hope some of mine helps someone, and so sorry for those feeling rubbish. Hold on to there are better days to come, but have a cry when you need to. Much love to all x
Also looking forward to being PICC line free! I wonder if they take it out on the same day as the last chemo.
Only one more to do then. Although agree with what you said 
If I suffer badly again I will try and get more info out of them re reducing it. Only one more to go now though thank goodness!x The Radiotherapy team seem much more contactable and helpful and I have a dedicated nurse to contact with any issues or worries.
typical!
