Hi, yep coming to end of this batch, just one more to go . I will continuing with the Phesgo injection every three weeks and will be going back on Letrozole or something similar.
Itās been a slog, some cycles easier than others. Taste issues have really got to me. Fatigue has been fairly heavy duty as well.
I canāt wait for my PET scan once this treatment has finished, there was a little reduction and no progression on my half-way CT.
My only black cloud is knowing that more chemo will be inevitable at some stage and I am really struggling with that . Letās hope the memory fades and I will go into it optimistic
Looking forward to hear how everybody else is getting on - itās been super quiet on here
Hi @puglover56 Good to hear that are coming to the end of this batch. Iām sure your body will appreciate the treatment rest when its all out of your system.
Oddly I was just thinking this morning that this group seems much quieter than other 2026 chemo starter months. Hope treatment is going well for everyone and not too many side effects.
I think you are on Docetaxel and Phesgo? My cycle 5 of TCHP is tomorrow. Iāve had delays after every cycle due to neutropenia but was prescribed Pegfilgrastim (instead of Filgrastim) for cycle 4 and was delighted to see my blood results last night showing good neutrophils. So no delay this time I had to fight for it though due to it being more expensive for NHS. Bit frustrating that the delays have put me back about 3 weeks in total, so surgery will now likely be the beginning of September instead of August. Apart from the delays my fatigue levels have definitely got worse with each cycle. Seem to spend most afternoons lying on sofa but I do manage (admin) work in the mornings. Mind you just taken my pre-treatment steroids and am now feeling totally wired, so probably no sleep today!
I have my 3rd cycle of EC tomorrow. I started with docetaxel/carboplatin/Phesgo, had 3 cycles but had worsening peripheral neuropathy so my oncologist switched me to EC. I had more taste issues and mouth issues - ulcers, sandpaper mouth- with the first lot than with EC. EC makes me nauseous for 3 days then I am hit with overwhelming tiredness for a few days. Then I just feel like Iām hungover!
My oncologist is not sure if I am going to have 1 more cycle of EC or 2 more cycles. They wonāt decide about the last cycle until the day before itās due, which is psychologically not great for me.
Love and strength to everyone on this rollercoaster ride x
4ac and 7 weekly taxol doneā¦getting dose reduction from next week and oncologist is suggesting i skip the last 2 due to neuropathy. Not sure how i feel about itā¦ā¦
Great to hear people coming to then end of this phase. Ive been thinking of this group. Hope ye are able to enjoy the weather. Though sleep at night in thid heat is not easy!
Same, itās great to be getting to the end isnāt it? I have no 7 tomorrow and last one in a fortnight! I really am ready to be finished with the chemo.
I had a meeting with the oncologist last night to discuss radiotherapy. I need 15 sessions and the plan would be to start those on 24th August. The oncologist did mention I may be able to get on the fast forward trial which delivers the total dose over 5 daily fractions as opposed to 15, so hoping I could be offered that?
@puglover56 So true! Got up at 4am this morning after about 4 hours sleep. Have already been for a walk and done some quiet cleaning (so as not to wake husband!) Not looking forward to the inevitable crash on day 4 though!
I had a very similar convo with my oncologist and he mentioned this trial too. Just waiting to have more info through about it. Spent about 4 hrs on the day unit this morning and after premeds and everythingā¦.the pacli looks to have crystallised and therefore treatment cancelled for me today
Not sure how I feel about it tbh Iāve gone a bit numb. I think Iām disappointed at the delay and feeling a bit sorry for myself as I really want this to be over and sometimes it just feels like set back after set back.
Sorry to hear about your treatment being cancelled, Iād feel exactly the same. Can they fit you in to have it done before your next one is due? I had 7/8 yesterday and was so glad to get it done. It almost felt longer than the previous ones possibly as I had built it up so much to be able to say only 1 more left?
The oncologist said the radiotherapy trial was randomised do 2/3 chances of getting on it so just keeping my fingers crossed now. I guess in the grand scheme of things itās only another two weeks if not but Iām so ready to be done either way it. Also had a quick conversation yesterday about next treatment steps which are likely to be zoladex injection, letrozole and ribociclib - so thereās a lot of blurb to read.
Yes I think Iām going back on Tues to have this missed one
So glad yours went well! Yes I totally get what you mean, the closer to the end the more it kinda drags?! ONE MORE LEFT for you now though
Iāve got the same next steps as you too (although Iāve been having the Zoladex jabs since April and they also want me to have Zoledronic acid IVs). I feel like they threw paper work at me though and expected me to just read these printouts and be ok with it all. They didnāt have much of a conversation with me so Iāve asked for another appointment to actually talk it all through as itās overwhelming espesh when youāre essentially just reading back to back pages and pages of potential side effects.
So pleased youāre not having to wait to long for the missed one (if it makes sense to be pleased not to miss a session of chemo?!). Iāve cold capped throughout and the length of infusion plus extra time for the cold cap has just made it so much worse, Iām so ready to be done with it.
How have the injections been so far? Have you had much in the way of side effects? Probably not easy to distinguish in the midst of chemo.
i agree thereās such a lot of information and itās all completely alien to me, Iāve very limited medical experience and with the exception of having my children have hardly set foot in a hospital setting. I get itās their job, but I definitely feel sometimes thereās a lack of empathy when this is all so new to the patient. Maybe thatās just my experience however x
Gosh yes I bet - itās a long infusion without the extra time! Not much longer now though youāre almost there have you managed to keep much hair?
The Zoladex injections have been fine for me so far, I scared myself a bit reading peopleās experiences online but so far not much to complain about. I had the first one no numbing or anything and it was fine, a tiny bit uncomfortable but completely manageable. Now I put numbing cream on beforehand just to save any discomfort as I think why not! I had hot flashes to start with that were brief and easy to manage by taking a layer or two off. Iāve had 4 injections now and the hot flashes have settled down and donāt really make an appearance anymore. Other than that I havenāt noticed much else different.
Yes I agree lack of empathy sometimes. It makes me feel like Iām a cog in a machine and people donāt interact with me as an individual going through this. But Iām learning to advocate for myself and to try and push for more support I hope for more for you too as you def deserve it! Weāre not the medical professionals and I wish they were better at ātranslatingā things for us in a way we can understand and process so we can make informed decisions and not feel so scared.
Itās such a long time with the cold cap on - about 5 hours in total! Iāve managed to hold on to about 60% Iād say so far, itās much thinner than it was and itās a bit patchy in parts but it was pretty thick to begin with so have managed to sort of hide it by just keeping it loosely tied back? It looks dreadful but Iām grateful Iāve kept so much so far. Iām still brushing handfuls out every day so who knows what Iāll be left with. Sadly my eyebrows and lashes have made a run for it and Iāve definitely found that hard to adjust to. Have you coped ok with the hair loss?
Thatās so reassuring to hear about the zoledex, as you say some of the side effects are so scary itās really great to hear itās not been like that for you.
I completely agree learning to advocate for myself has been an enormous part of the journey, I do get that itās rhythm and routine for them but sometimes that really can feel a bit cold x
Wow it looks good to me!! Glad you can do some hair positioning to feel comfortable with it too. Iāve adjusted to being bald relatively well. Iām kind of used to it now. I shaved my head and donated my hair beforehand so it felt like my choice.
Iām not quite brave enough to go bald out and about but I just wear a baseball cap. Like you my eyebrows are really quite sparse now and eyelashes are patchy which Iām weirdly finding a bit more difficult than my head hair! Also all my leg hair didnāt fall out and I think thatās just rude
Good on you! I kind of thought that the cold cap wouldnāt work so was ready to get the clippers out and actually felt ok about it but surprisingly my head hair has hung on so just gone with it really.
Iām the same re my lashes and brows, actually manages to give me a bit of a scare when I look in the mirror first thing in the morning! Iāve managed to pencil my brows in ok-ish though itās getting harder to join the dots. I did try the temp tattoo type brows which are actually pretty good I just havenāt quite mastered the application and have put them on uneven giving myself a quizzical look?! As for lashes Iāve just stuck a bit of eyeliner on, Iām convincing no one theyāre lashes but I canāt master a natural looking fake lash so Iāve just given up! Iām just hoping they grow back quickly?
Hi @nat_26, nice of you to check in. I did three cycles of EC without too much trouble then switched to Docetaxel and I did find it weird having to cope with a different set of side effects. At first I thought it was a breeze and then on day five, I got hit with horrendous diarrhoea. Oncology team are being very helpful, though and are loading me up with Imodium and codeine. I am a bit paranoid about peripheral neuropathy, but only got random tingling and a few aches and pains. The thing that bugs me most is the Filgrastim injections, which give me nasty headaches but seems better if I take a Clarytin.
I gave my leg hair two months to let go and it didnāt, which I also thought was pretty rude so I ended up taking a razor to it and it hasnāt regrown a month later. My brows have started to thin out but Iāve got enough to still fill them in with pencil and no eyelash fallout as yet. My head looks completely bald at first glance but I do have some light, peach fuzzy stuff that still grows and when it gets long enough, it makes me look a bit like the bad guy from Hellraiser!
. I will continuing with the Phesgo injection every three weeks and will be going back on Letrozole or something similar.
. Letās hope the memory fades and I will go into it optimistic 
I had to fight for it though due to it being more expensive for NHS. Bit frustrating that the delays have put me back about 3 weeks in total, so surgery will now likely be the beginning of September instead of August. Apart from the delays my fatigue levels have definitely got worse with each cycle. Seem to spend most afternoons lying on sofa but I do manage (admin) work in the mornings. Mind you just taken my pre-treatment steroids and am now feeling totally wired, so probably no sleep today! 
espesh when youāre essentially just reading back to back pages and pages of potential side effects.
have you managed to keep much hair?