I am coming up for 12 weeks of Letrozole and haven’t started it yet. That’s worrying!
@sam3 the injection is a hormone suppression injection xx to absolutely make sure my ovaries don’t work xx she doesn’t think I need it but it has to be prescribed with the exemestane to make sure xx she explained it that with all 3 the exemestane prostap and abemaciclib that will give me the best chance of non reacurrance xx each one can have different side effects so my fingers are crossed
I’ve been feeling ok and have been getting out more and socialising so don’t want to go back to feeling crappy !! I have 5/15 radiotherapy left and so far it’s been really ok xxx
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Hi @flojo - perhaps it’s different with Tamoxifen which is what I’m on. I just remember the oncologist saying that I’d need to start the tablet within 12wks of Tamoxifen starting. She didn’t tell me why though. Are you planning on starting it also? Xo
Hi @kd48 , I will keep my fingers crossed for you. I was going to ask my oncologist re ovarian suppression as I don’t know if I need that or not 
I was told by a nurse that my tumour was 100% sensitive to oestrogen so I have been wondering about that.
I was same with radiotherapy. I finished over two weeks ago. I’m tired (which is always the case anyway) but thankfully my skin is fine and it was not a difficult treatment for me.
I haven’t been socialising as much as I’d like as I want my hair to come in a bit so I can go out without a hat but I want to get some sense of normality and do not want the new med to knock me back!
Good luck re injection and I hope you have minimal side effects xo
Yes, @sam3 I am due to start it next and will give it a go as I’m high risk of recurrence. I have an oncology appointment on Friday but that will be 12 weeks on Letrozole so I might ask about it before then. I only finished my radiotherapy on Wednesday so I was hoping to give my battered body a little time to recover before the next onslaught. So we will see! I am not looking forward to it though. x
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Yes the v shape pillow had been a god send! Ive never been a back sleeper but have had no choice just now so its not been as bad as i thought!
Yes taking it easy managing to go out for coffee but needing a lift everywhere not able to walk far enough yet without my back hurting to much xx
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Never thought i would be so happy to see my period back, 
that would partly explain my back pain, did have surgery 2 weeks ago so part of that aswell 
xx
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That’s really interesting I’ve kind of written mine off haven’t had one since December. My specialist seemed to think I may start again but I’m not convinced I’m 44.
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My oncologist said it should come back i think my last one was December it was just after my 2nd round of chemo! I never thought it would have come back this fast 
xx
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Have any of you ladies had a zoledronic acid infusion? I had my first and started abemaciclib yesterday, and I’ve had the worst night, like a combo of the flu and a massive hangover, which I wasn’t expecting!
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Sorry to hear that @flowers5. I think the flu like symptoms are quite common with the zoledronic acid. I was warned of this and also spoke to a fellow inmate during radiotherapy who told me this was the case. She said that the first one was the worst - she nearly didn’t go back and have any more, but they were ok after that.
I am starting the two drugs separately a month apart because of the side effects that both can have and so they can tell which is causing the issue if there is one. I hope you feel better soon. xx
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Thanks for the reassurance, it’s good to know that it might not be as bad next time. With hindsight it does seem a bit foolhardy to give me both on the same day. x
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I think the flu symptoms last a couple of days, so hopefully you will be on the mend soon. xx
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Gosh so much to catch up on! I’ve now had my surgery (double mastectomy with temp implants on 17th April), have started on the Letrozole and am due to start 15 sessions of radiotherapy on 24th June.
It made me sad to read so many women feeling ‘shallow’ grieving for their hair. Hair is so important and it is such a symbol of cancer, so of course we want to look at ourselves and not always see the reminder of what we’ve been through. Personally, I decided to just stop covering up when it started to come through. To be honest I was only even covering my baldy head with a beanie when outdoors throughout the winter. For some reason wearing a wig or scarf made me feel terribly self conscious. Not sure why. But to be frank I know I’ve got a decent head shape for it and I wore my gear super short back in the 90’s! Plus I am not super grey yet…… @arty1 I think you look super chic actually - especially the grey! But I totally get what you mean about identity and wanting to see ‘you’ as you were before.
I’m hating the Letrozole and every night when I pop a pill I tell myself that it’s saving my life! Feel I’ve aged physically by 20 years. I’m 52 and have to crank myself into physical movement after sitting for any length of time, have flushes, muscle spasms at night and am sleeping terribly. But I am hoping that my body will ‘adjust’ in time. I’ve been on them for about a month now.
Anyone else struggling with this stage where we appear to be better and theoretically are cancer free, but are struggling with the creeping demands of family and life in general? Finding I am still in a bit of a self made psychological protective bubble and am finding the emotional demands of my family - in particular my teenage children - really hard. Struggling to be ‘present’. It’s particularly hard with my daughter who has come home from university and is very emotionally needy of me, and I just don’t seem to have the emotional capacity for her! Then I feel like a shit mother!
Was pleased to hear one of you say that radiotherapy hadn’t damaged you - I’m hoping I’ll be lucky on that front and that I don’t lose one of my implants. Last hurdle….
Last thing. That exercise report saying that it was more effective than drugs in terms of stopping a recurrence was really interesting. But it has sent me into a funk. Because I feel so bloody tired physically and unmotivated and so it’s just another thing for me to feel I’m failing at!! Why can’t I just get off my bum and do some exercise!!!
Love to you all. Rosie.
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Hi, thought I’d share an update… After the last chemo in early April, I had 15 sessions of radiotherapy starting 8 May. i actually found this really easy, and apart from some itching for a few days about 1 week after finishing it all I had zero side effects. They gave me some creme when I started which must have done a really good job as my skin did not even go red. The only time I felt tired was when I didn’t eat enough, the radiotherapy nurse told me I needed high calory food and she was right, it made all the difference.
I should have started Letrozole at the same time, but after discussing with the team they said it was up to me if I wanted to start immediately or wait until after radiotherapy as it apparently can make side effects worse. As I already had plenty of hot flushes while staying in the hostel accommodation provided by the hospital (on top of the hospital, south facing, wall to wall sunshine, bloody hot, but fab views) I only started Letrozole about 2 weeks ago. So far I am actually feeling better on it than I did off it! I take it in the morning, and for the first time in a very long while I am able to fall asleep when I go to bed and sleep through most of the night. The legs do feel heavy at times and I have felt a bit fuzzy, but going for a walk and doing something physical seems to help. Not sure if more side effects will come up the longer I take it?
This coming week I will have the first calcium infusion. Not looking forward to it, but it can’t be as bad as the chemo…
Best wishes x
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Ladies - I’m
So sorry I’ve been absent … my adult son has been staying for a week and that’s taken up all my time and energy … I put him on the train back home on Friday … but that wasn’t without drama ! The daft so and so left his house keys at home … so had to get off after 45 mins . Then get a train back … then get another train which was the. Held up by a points failure and he nearly missed his connecting train which would have been a disaster as it was the last train out of Newport !
Finally he arrived home to Chester at 2 am and I collapsed in an exhausted stressed heap . He basically didn’t three hours going back and firth to Newport 
A few weeks ago I found a lump in my remaining boob … a worrying time waiting for the urgent breast clinic . I finally had my appointment on Thursday and nearly passed out with relief when they said it was a fatty cyst !!! I actually cried as All the awful memories of last year came flooding back when I went into the scan room after my mammogram
@shannon27 - So glad you are recovering ok from your surgery , you are looking fantastic btw !
At nearly 53 I assumed that chemo would permanently put my ovaries to sleep so I’m outraged my periods have returned ! Im having such dreadful heavy periods which is not helping my anemia 
I’m going to ask for a referal back to gynae … at least they can’t insist I try a mirena coil this time ! (Was fobbed off before )
@rfg - I’m with you on the hair thing . We shouldn’t need to apologise for feeling upset at losing our hair … cancer obliterates you and it’s devastating to have everything that you identified with as YOU … disappear…
I’m struggling with the demands of daily life … I’ve gone back to working weekends and spend two hours a day driving my daughter to and from school … on top of everything else … It feels like everyone expects you to return to normal despite it being proven that it can take a long time to recover from
Chemo alone 
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So relieved for you that it was all ok @arty1. xx
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Hi Rosie. I tried different times with my Letrozole - last thing at night…kept me awake; first thing in the morning…felt ropey until mid-afternoon…So currently, I take it just after 5pm. I don’t sleep terribly well still but otherwise, that seems to work best for me.
Good luck with the radiotherapy. I finished 15 sessions a couple of weeks ago. I found it harder than I thought - mostly, it’s a bit undignified and I was tired afterwards. Going back and forth to the hospital every day is a bit relentless too. My chest looks like a terrible case of sunburn, but I had a bolus where I had a mastectomy (basically, a gel pad) which acts like the missing tissue and makes sure the radiotherapy gets through to the chest wall…I think! They warned me it would likely be worse because of that and they weren’t wrong! Hopefully it will clear up in the next week or so though.
Don’t beat yourself up about exercise - our poor bodies have been through so much! xx
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Aw km so glad it was a fatty cyst ! And it got checked fast for you!!
Thank you recovering well, have been suffering a sore rib today but need to rest and painkillers and i should be all good again! Xx
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Hi Ladies - how are you all ?
@shannon27 - I’ve had sore ribs on that side since my mastectomy … I wonder if it’s a documented side effect ?