Hi @sunshine-smile my bloods were fine, so I was kept on top dose of abemaciclib. I have them checked again this Friday, and phone appt with oncologist next Monday - I’m really hoping they’ll drop me down a level (we start off at 150mg twice a day, but it can be lowered to 100 and even 50 and it still does the job). I’ve had 6 lots of diarrhoea in just over 2 weeks, but the first lot of loperamide sorts it out so I don’t know if they’ll keep me going and hope it just settles. We shall see….
I’m starting back at work today but I only work part time so should be ok, just 12-5 today. I’m a bit nervous but looking forward to getting back to normal. I’ll be wearing my wig for a month or so I think, like you my hair is pretty much back but it feels a bit patchy at the front (I may be being over critical?!!) , probably about 1cm in length all over and nice and thick still, but hard to tell at this length if it’s grey or still my mid brown, I think the colour is taking a while to settle. Anyway it’s still just a wee bit short for my liking so I’ll stick with the wig for now - luckily my library is in what was a Victorian school and it’s very cold even in the height of summer, so I’ll be glad of the extra warmth for now . Eyelashes and eyebrows are back to normal, I’m just hoping they don’t fall out again or anything silly. Leg hair seems to be growing a lot faster than head hair but that may just be because I don’t want it to! Abemaciclib doesn’t seem to be affecting hair at the moment, and they say it can, so hopefully you’ll be ok on your ribo too xx
Hi ladies, wow what a ride this has been, thank you for all your well wishes, means a lot. I finally got discharged from hospital on wed last week. Right in the middle of half term, my poor boys, what a rubbish week doing nothing wondering what was going on with me. I had the seroma drained 3 times, was on industrial strength antibiotics. Moved to another hospital over the weekend. Back to the breast centre on the Monday to be readmitted back on IV antibiotics to then end up having surgery to clear it anyway. So have had district nurses back and forth the house now I’m going to 3 different GP surgeries over the next few days to continue changing/repacking wound & dressings. I’ve got physiotherapy tomorrow to see how my range is now after all this, but they already said my RT may be moved from the 2nd to the following week as they’ll need a closed wound before they can officially zap me. So I’m demolishing lots of protein as apparently that helps with healing. Still on antibiotics so hoping now that I’m back on the up. But worried that I haven’t been doing my exercises for fear of overdoing it with the wound. It’s all a big learning curve isn’t it!.
How’s the radiotherapy going @louise15 , how many have you done now and how’s your skin doing? Are you using any specific creams to help? I’ve been googling sound baths. Have convinced a friend to go when I find one near us. She’s game so that’s good.
Thanks @bramble1 did you have to have it packed each day too? they told me that doing it this way will heal from the inside out instead of putting a drain in. I believe mine is also from the node clearance I had the same time as my mastectomy. Hope your oncologist can help you with your symptoms. How was going back to work? I’m still remote, haven’t seen most of my team in a year now.
Hi @sunshine-smile how are you doing now after your operation? Hope you’re recovering well. My eyelashes are starting to fill in the gaps now which is amazing and the eyebrows are spiky which is great finally. Noticing my legs are getting little spikes now etc so that’s good. Can’t wait to be able to put on mascara again and look more myself. My eyebrows were microbladed 2 years ago so to anyone looking at me they wouldn’t have noticed I had no hair (or mostly no hair), but obv I’m in a magnified mirror examining everything
Hello everyone! Hope you’re all doing well I finished up radiotherapy last Friday. I only have two transtuzemab injections to go and then that will be me finished with active treatment - I can’t believe it! Other than my Tamozifen of course. How is anyone else who is on Tamoxifen finding it? I don’t feel I’ve noticed much from it, which I guess is good?! Is anyone else finding there are times they doubt themselves and their body when things feel it’s going ok, or is that just me?! I had to give blood today, and my poor veins are still not good. They didn’t want to give blood and were sore, and I think I was triggered as I came out of the GP and sat and had a cry in my car. Otherwise I’m all good, my son and his girlfriend got engaged on Sunday which has made me so happy and I’m so glad to have something so lovely to celebrate! I’m off out with my friend on Saturday to celebrate me being cancer free, my sons engagement and her upcoming wedding and I think after months of not drinking that one glass of champagne will be enough to have me quite tipsy
@pips12 so glad you got it all sorted! I know you’re only two days in but how are you finding it?
@sunshine-smile The remainder of radio was all good thank you! I’ve not noticed two much yet, my skin appears a little darker and I feel some tenderness but otherwise nothing.How is your recovery going? Sorry I can’t help with the Ribociclib as that isn’t something I’m on. Glad you’re starting to feel more like yourself - I’ve felt the same! The no lashes and brows is definitely not a good look I went for my second shave of head hair last week, my hairdresser is very happy with my hair growth as am I! I have a couple of greys which I didn’t have before, but I don’t even mind I’m just happy my hair is back!
@bramble1 how is the return to work going? I’m going to go back fully in a couple of weeks. I’ve worked on and off throughout, so I’m not too nervous but I do think because I feel like I’ve still got chemo brain (could be menopause brain at this point though!) it makes me a feel a little worried about the impact that will have when I’m back fully doing my job.
@emma-jayne sounds like such a rough ride! How did physio go today? When will you know if radio is being moved? I had 9 radio all in, 5 and a boost for 4.They gave me a steroid cream which I’ve to continue to use until the end of next week, and they also gave me zero base moisturiser which I’ve just to use twice daily until it’s done. Thankfully I’ve had no major issues so far! Glad you’ve managed to talk a friend into doing the soundbath! Randomly, when I was in doing radio last week a lady approached me, and she recognised me from sound bath I had done so we’ve arranged to meet again for the next. So making some breastie friends from my soundbath lol x
Hi all, day 2 of radiotherapy and all seems to be going well so far. I had a very quick review with a breast nurse who was a bit surprised that I haven’t spoken with my oncologist about the treatment. She said I should have been given all the information I required, pros and cons etc, in order to ask questions and make decisions. The oncologist also sent a prescription to my GP for letrozole, but again I haven’t discussed with anyone so will wait until I see oncologist on 25th March.
Also been suggested I take ribociclib, but not sure about that.
Good to hear that you are all starting to get back to some sort of normal, hair is growing, and things are settling down.
Sending best wishes to those who have had a rough time recently, I hope you feel better soon. Xx
Hi @emma-jayne I had to use stomach dressings and tuck them under my arm and into my bra , and just keep changing them. Eventually it just eased down to swabs which were much less bulky. I didn’t have district nurses, but did have close contact with the BCN who kept a close eye on healing and kept me well stocked with dressings and swabs. I didn’t do my exercises for ages afterwards because I was scared, but I was lucky because it happened before chemo. I did do a few in the shower, so if there were any leaks it didn’t matter! But also don’t worry too much if you can’t get your arm right up afterwards, they use arm rests in radiotherapy and will sit the arm where it is comfortable, my elbow was sort of right angles to my shoulder, it didn’t need to go straight up above my head. Just work on it gently when you can, and it will be fine.
Work is going well, but my brain is tired . My first person through the door was one of my lovely regulars, and he was so pleased to see me it put me completely at ease. It’ll take a bit of time to get things back to how I like them, there are too many leaflets lying around for my liking and my books need sorting. I’ve also had a bit of a hiccup with pay, but that will be sorted in March paypacket (should have had full holiday pay but was still paid half sick pay), and had to send various emails to sort out silly little things, and 3 lots of online training. But it’s good to be back and feeling normal again . Day off today so I’m having a lazy morning.
I have bloods again tomorrow morning, and oncologist phone appt Monday morning so we shall see what happens with them.
@louise15 congratulations to your son and his girlfriend. Work is fine (see above) but I am having to write notes to remind myself of tasks I need to do - it’s something brain, that’s for sure! But that will hopefully ease off once I’m back in the swing of things properly. Everyone seems to be very kind and understanding at the moment, but I’m not sure how long that will last?!
@pips12 I’m on letrozole and have had no issues with it, but I also have a 3 monthly hormone blocking injection Leuprorelin I think it is, as I hadn’t hit menopause when all this kicked off, and that hasn’t affected me so I was told letrozole probably wouldn’t either. I do get a bit warm but I don’t know if that’s hot flushes down to the meds, or just me (I’ve never been one to feel the cold so tend to “run warm” in general) especially now I have quite thick hair under my wig when I’m wearing it! Hope the radiotherapy keeps going ok xx
You know now that you’re mentioning that, yeah at my appointment with my oncologist prior to radiotherapy she went through everything with me, then I had to sign a consent form. I would have also thought that with a change in meds, they should have contacted you. I’ve realised through being on these forums though that different with different NHS health boards, the standard & processes across them all is not the same at times
Glad the return to work has gone well! I have always used a to do list in work anyway, think once I return fully I will be utilising that so much more!
Dropping in to catch up on your news. Treatments are settling down for most of us but I don’t think this ever really leaves you does it?
Letrozol has been making my knee and ankle joints really stiff and a bit sore. It takes a few moments to get my body to not feel like it’s made out of ryvita, brittle and about to snap. Funny if it wasn’t so tragic.
Energy levels are somewhat improved and spend Feb school break in Brussels doing food, waffles, fries with mayonnaise and leffe along with the cultural elements of the city. Three days on my feet all day and I had to spend my last day of leave sleeping and resting as I couldn’t do another day of energetic activity.
Back to work full time and still having to pace quite hard, energy for work and not a lot else which feels like the wrong way round somehow.
Hi everyone, so wonderful to know we are all through this now and life is getting back to some sense of normality.
I have now completed my 2 weeks of radiotherapy and have started taking letrozole and calcium tablets. Feel quite stiff first thing, especially knees and lower back, but I’m doing very gentle chair yoga (for seniors, as I am one) and hopefully will start to move a bit better soon.
As I retired 2 years ago, I don’t have that extra pressure from work, and am in complete admiration of those of you who work and cope with children.
@emma-jayne how’s the healing going? Have you managed to start radiotherapy yet, or are you still having issues?
I’ve now done 3 weeks back at work and think I’m a bit less tired. Still trying to get used to these flippin’ abemaciclib tablets but I’ll get there. Mainly sore tummy and diarrhoea but not all the time so it’s manageable, just draining. I did revolt the other night and “accidentally” forgot to take one, but I’d had 2 lots of diarrhoea that evening and just couldn’t face it. It probably wouldn’t have stayed in the system anyway! But I’ve been very good apart from that and am half way through cycle 2, just 24 to go
I also had a phonecall from the breast care nurse on Tuesday, to check how I am doing after all the treatment, physically and emotionally/mentally, and also remind me that over the next 5 years if I have any concerns about breast, armpit, upper chest area etc I can go straight to them and not through GP. She was lovely, we were talking for about 45 minutes. She’s sent me the moving on booklet - have any of you done the course? I’d have to do it online but am not really sure if I want/need to. Anyway she said I will hear from them again in June/July for breast screening and a catch up with my breast consultant. Meanwhile I have bloods again to look forward to next week.
@outdoorsy mine was shoved straight in the drawer of doom . I can’t say the course really appeals, I feel fine and just want to get on with my life. But I guess it’s nice to know it’s there in case I hit a downer in a few months time
Hi @bramble1 and @outdoorsy I’m due to do the Moving Forward course (chose the face to face one) in a few weeks time, so will report back afterwards. I’d booked onto it last year too after my first IDC, but after my second one was found a few months later in t’other breast, I was told it was no longer open to me. …I asked at the time if they had a Moving Backward course but I don’t think they found it funny (made me laugh tho). Tbf I get why it’s only for people who’ve finished active treatment - am still slightly worried it might be a bit tambouriney for me but we’ll see!
While am on, has anyone suffered from hand rashes since chemo? I had my last paclitaxel in December but am still struggling with itchy hand rashes. Some days better than others. The chemo team just tell me to keep moisturising but it doesn’t feel like a long term solution given am still getting them 3 months after finishing. I’d blame the Ribociclib (which seem to be tolerating well) if it wasn’t for the fact the rash came first
@pollypox I didn’t have hand rashes but did have really itchy face rash which was annoying. I think it was my moisturiser, I switched to plain old Nivea and it cleared up. So might be worth trying some different cream? I was told to keep moisturising too, but that doesn’t really help if it’s the cream that’s agitating it!
Please do let us know how the course is - I like the Moving Backwards comment, they obviously don’t get our sense of humour when we’re going through this stuff.
Hi @louise15 thanks for the message, I’ve been hibernating if I’m honest. I still haven’t started. They wanted the wound to be fully healed. But was due to start yesterday as it’s doing really well and they had to do a new planning scan as after my second surgery my shape has changed. They thankfully squeezed me in yesterday but have to wait on a new date now. My arm has cording too which I’m still doing my exercises, but it’s hard.
So pleased you’ve not had any issues from it. Looking forward to finding that sound bath sooner than later now
HI @bramble1 thanks for the message. I’ve not yet no. I went to start yesterday but they had to do a new planning scan in the end as my shape/measurements have changed since my second surgery. So they’ve rang this morning and said provisional for next monday subject to this and that. So keeping my fingers crossed. I’m still having my wound dressed so that was also an issue, but i’ll keep going with that and hopefully I’ll be all healed by Monday. They said it’s the size of a pin prick now but still has a tiny bit of cavity.
Mum’s in hospital too now having had a fall at her flat so I’m seeing hospitals in my dreams atm too.
3 weeks has flown by I expect. Glad you’re less tired. Are you still managing to eat ok with the side effects? That’s nice you had a long chat with the nurse. They’re worth their weight in gold aren’t they.
Hi @emma-jayne fingers crossed for next week then, at least they haven’t postponed it again at the planning scan, so I’m sure you’ll be fine.
Hope your mum is doing ok .
My appetite is a bit all over the place, and definitely down on normal, but I need to lose weight so I’m not complaining . I have lost a stone since January, so not excessive fast weight loss and I do need to lose it but I’ll have to keep an eye on it. I’m scared to eat some days, yesterday my tummy was so sore after a couple of bouts of diarrhoea on Monday evening that I couldn’t face food. I did eat, but not a lot. Today I’m ok, but I know that my next diarrhoea bout I will basically lose that days food (or at least one meal) and then I won’t want to eat the next day . I have to have bloods done tomorrow, and then again next Friday 27th (supposed to be 2 weekly but it hasn’t worked that way) so we’ll see what they say. It’s just mentally/emotionally exhausting (not really sure which word is more accurate), especially not knowing what to eat or drink, but I think I’m doing ok physically.
but I only work part time so should be ok, just 12-5 today. I’m a bit nervous but looking forward to getting back to normal. I’ll be wearing my wig for a month or so I think, like you my hair is pretty much back but it feels a bit patchy at the front (I may be being over critical?!!) , probably about 1cm in length all over and nice and thick still, but hard to tell at this length if it’s grey or still my mid brown, I think the colour is taking a while to settle. Anyway it’s still just a wee bit short for my liking so I’ll stick with the wig for now - luckily my library is in what was a Victorian school and it’s very cold even in the height of summer, so I’ll be glad of the extra warmth for now 
. Eyelashes and eyebrows are back to normal, I’m just hoping they don’t fall out again or anything silly. Leg hair seems to be growing a lot faster than head hair but that may just be because I don’t want it to! Abemaciclib doesn’t seem to be affecting hair at the moment, and they say it can, so hopefully you’ll be ok on your ribo too 
xx
I finished up radiotherapy last Friday. I only have two transtuzemab injections to go and then that will be me finished with active treatment - I can’t believe it! Other than my Tamozifen of course. How is anyone else who is on Tamoxifen finding it? I don’t feel I’ve noticed much from it, which I guess is good?! Is anyone else finding there are times they doubt themselves and their body when things feel it’s going ok, or is that just me?! 
. Day off today so I’m having a lazy morning.
afraid I binned my moving fwd booklet…..oops. wasn’t in the mood the day it came!
