Has anybody that’s nearing the radiotherapy process been put forward for the fast forward 5 day radiotherapy trial?
They suggested it to me as originally I was told 15 sessions plus a boost of 4 days so 19 in total, but said I’d be eligible for the trial of 5 days. They sent lots of info over as just hearing “trial” put me off if I’m honest! It sounded very tempting to get it done in 5 days but let’s face it, this is serious stuff, all I’m interested in is the best and most effective level of treatment, not the convenience or money saved on parking or for the NHS! It did also say in the info you would be put in either a 15 day or 5 day trial so I could end up doing 15 days anyway. Would you stick with the standard treatment?
Any input would be appreciated 
Hope you’re all getting on OK! I’m also glad to report following the extremely sore mouth last round that I’m now day 4 and tongue/mouth holding up OK thankfully! I was already in agony at this point, thank god for salt rinses, bright green mouth wash and gelclair!
Some of my blood counts were low too this round which possibly was due to not being able to eat anything than Greek yoghurt! So hopefully they’ll be up again for my last round in a couple of weeks!!
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@twink1 I had weekly paclitaxel for 12 weeks and was mainly ok. I didn’t experience any of the bone pain others report. Face rash, bloody nose and a bit of fatigue towards the end but nothing like most people on EC report. And all well managed really.
I had no injections at all, I missed one week due to low neutrophils but 100% cocoa got me back on track and I kept mine above 1 after that.
Hopefully you’ll be fine 
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@jululemon you do have a long and difficult journey ahead. Sounds like you’re strong and keeping positive 
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On the reconstruction I didn’t have any, also being small breasted but not wanting more complicated surgery and recovery. It’s such an individual decision - there’s a good thread on here about whether to stay flat or go for reconstruction which is worth have a scan through. I know people who had a good experience of reconstruction and others who ended up with lymphedema and a very long road to recovery .
On tamoxifen. That’s given to pre menopausal women and it’s quite a bit less aggressive than the aromatase inhibitors given to people like me who are post menopausal. So definitely less side effects on tamoxifen (for most). For every person who reports no SEs on letrozole and similar there’s one who has bad ones! It’s a minefield and no easy answers. Feels like this journey never ends 
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@sam1204 thats interesting - I hadn’t got as far as grasping the differences between Tam and Let (very much trying to take this all one step at a time) so that pre/post distinction makes sense! A tricky decision for you then. I am sure you’ll reach the right decision for you ultimately. Will take a look at the reconstruction thread - thanks.
@katie91 not long now - my final should be 6 days before you! My friend who is an oncologist doing a PHD in radiotherapy stuff told me about that trial - I’ll ask her more about it and get back to you. Is the dosage the same whether over 15d or 5d? Your mouth sounds so sore. My ulcers have been bad but I’ve been lucky I’ve been able to eat albeit with some pain. It’s the tongue ulcers which are the worst I find as they’re constantly triggered!
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Thanks. I’m borrowing trouble, aren’t I? I put natural organic cacao powder into my smoothies on smoothie days. It’s much paler then 80% chocolate but is bitter, I guess, without all the fruit and flavoured protein that goes in.
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MY chemotheraphy is neoadjunct as well. NOT looking forward to next weeks breast ultrasound as it was an ultrasound with punch biopsies that kicked off those whole shit show for me.
DD (nurse) came round to see me yesterday afternoon took one look at me and went ‘Mum you look utterly exhausted’ she sent me straight to bed in light cotton pjs and put the Dyson fan on reminding me I have still have red headed skin mixed with dark hair, have no appetite as everything still tastes foul (pointed out I rarely have that during a heatwave on a good day) and told me why my body is screaming at me to stop and lie down and do nothing Ìt bloody well means it. She also pointed out Chemotheraphy is draining and if you add a dynorod tendency on top it’s doubly so. lovely soul bought me a lemon and lime cordial from M&S to try as it’s not full of sugar, has no sweeteners and contains real lemon and lime juice. She also bought me a bumper box of diaralyte. I am seeing oncologist on the 8th again as the side effects for me from chemo have been a bit rough.
I have to admit DD was right, tried listening to an audio book and fell asleep for a couple of hours and then went to bed at 10 and apart from one dash to the loo last night slept till nearly eight. Today stuff trying to be superwoman who does things I am switching to the advice of do a bit for 10 mins max then rest for 30 mins then try again and STOP when your body starts to protest. IF this is a marathon I hit the wall. Going to try a boiled egg and maybe a slice of sourdough bread for lunch as after a week I am sick of soup.
i admire the rest of you who are able to think of the next steps but for now all I can do is take it day by day. Hope to get out and do some light gardening and maybe practice some watercolour studies. Still not accepting any hand embroidery nor art commissions as I have no idea how I will cope with surgery. Still working with trauma counsellor plus trauma therapist who is doing all they can so I can bear to stay in hospital to have a SMX and auxiliary lymph node clearance done. At this point I will be asking to speak with the anaesthetics team to let them know I have a serious trauma response and I am absolutely beyond terrified of anaesthetics. I once punched an anaesthetist who was trying to wake me up in recovery because I thought they were still trying to knock me out to kill me. logic brain tells me they want to help me but the scared side is not at home to being rationale.
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Rest definitely sounds best @wibbles One day at a time is all we can do sometimes. On my worst days its just moment to moment. Things will change for us all one day and we will bounce back full of even more life
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@katie91 just popped on to catch up with these threads after a few weeks and saw your post re the fast forward trial - is this the one where they give the boost dose in 5 days as well? I’m currently having mine over 5 days and then an additional 4 sessions for the boost (so 9 in total) - this was the original fast forward trial done 10 yrs ago. It’s local so not inconvenient but I’d just love for every cancer related appointment to be over!
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Oh this is fantastic to see - huge congratulations @sammy75!! The pic says it all - so happy! Enjoy some well deserved rest and recovery. 
Xx
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Thanks @jululemon! I think it’s slightly lower dose overall but each session is a bigger dose and you get put onto one of 3 options between 5 and 15 sessions randomly which is what concerns me because my whole treatment has been completely tailored to me and the tumor I had with it’s characteristics and now it feels like they’re saying but we can try and do the radiotherapy quicker but let’s just close our eyes and hope for the best 
Hi @herts82 yes so they sent me a huge leaflet out about it before I decide and I’ll basically be put into one of 3 treatment options randomly which will be between 5 and 15 sessions depending on the group I’m in. I feel like everything has been so tailored exactly to me up until this point so I don’t know whether to just do the 19 sessions as originally planned. Although I know exactly what you mean about wanting appointments done!!!
Was yours a trial or just how your local hospital does it? I read it’s now standard for some hospitals to do the 5 days course but because it’s been put to me as a “trial” I feel like a guinea pig xxxxx
Hi Wibbles, I think smashing your specs should be added to the long list of chemo side-effects. I am an April starter and one day I sat down on my bathroom chair to sort out the ridiculous numbers of creams, nail balm, et cetera, and managed to squash my specs, which I’d left on the cushion, to smithereens. It cost a fortune to replace them but it’s quite nice having new frames and the optician didn’t realise I was wearing a wig for a good 20 minutes…Gotta look for the positives.
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Hi @foxgem , Did they discuss the possibility of doing a simple mastectomy now and waiting to do a reconstruction in the future? That’s the option I chose when I had a mastectomy in March and I don’t regret it. Because your body is dealing with so many things and, frankly, I agree with the earlier person who said she found it easier to deal with the operation than with chemo. You could ask the plastic surgeon, but I think one consideration is that if you go ahead now it will happen quickly because it’s all part of the “curative” package, but if you wait, it becomes an elective and there’s a long waiting list.
Hi @katie91, I’ve just been reading up on this trial, which I assume is the fast forward boost trial where you get the normal radiotherapy and the ‘boost’ all in 5 days. It’s a tough one as you will also have to submit information I guess over the next 5 years on side effects/symptoms etc as well, so an extra burden which you probably don’t need! However, depends how passionate you feel on supporting improved treatments for future breast cancer patients and wanting the 5 days over 15.
My radiotherapy plan is the result of the last fast forward trial they did, so having your normal radiotherapy in 5 days rather than 15, and then the extra 4 days as a boost (so 9 days in total). This is actually standard protocol in the NHS now as well, but maybe different hospitals operate different policies, but I would say worth asking your oncologist if that’s an available option rather than the trial? When I was first diagnosed my breast cancer surgeon was pretty sure this is what they would recommend for me so I think it’s pretty common now. (I had an ER +ve stage 1 Grade 3 cancer)
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Hi Jane, although I’m still unsure what to do, I am also very impatient and id like to get things done and dusted as soon as possible. But I will discuss this with the plastic surgeon. The strangest thing for me at the moment is not knowing what size boobs I will have in a months time. What swimwear will I need on my next holiday. What bras do I need to buy. I’m grateful I do have some thinking time before I need to decide though
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Yeah, @foxgem I know exactly how you feel. All those details do your head in and seem depressing at the time. In my experience, Marks & Spencer has all the answers… swimsuits, nice little bras that only cost £10 because you don’t pay VAT, inserts, front fasteners that you need for the first few weeks. There must be loads of threads about this elsewhere but my only tip is for the front fastener — get their sports bra, not the ones with 3 fiddly hooks.
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Hello March beauties. Coming out the other side of the Docetaxel day 4 slump - apart from a brief flurry of garden activities in the very early morning, yesterday was a pyjama-heavy, food-light write off of naps and heartburn and low appetite and aches and pains. Keeping on top of mouth symptoms proactively seems to be working so far though. Going to try to keep easy pace today but make the most of the sunshine this afternoon. All we have to do is today, you’re all amazing.
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The lenses alone were a cool £500, thank all that is good l have the sense to put money aside ready to replace said glasses. I need my glasses on to be able to find my glasses. Poor oncologist was concerned chemotheraphy had hit my eyes but nope, turns out Ìt was frame redesign by chemochair that had twisted said frames to the point the lenses where no longer providing the focal point where it should be. Ophthalmic optician provided lots of extra eye drops and overnight eyedrops to combat chemo caused dry eye. It’s weird being able to see clearly again.
Glad you were able to replace your own glasses after you inadvertently crushed them. Chemotheraphy is not proving to be the cheap option. Thankful its the NHS as I do not want to think about the cost of all the drugs on top.
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Try and pace yourself @felineoptimist, I made the mistake of trying to push through and the pay back was hefty. Do what you can as and when you can and listen when your body is trying to wave you need to rest as the rest should be for a shorter period than if you leave it till your body is screaming stop. (Found out the hard way)
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