Oh Sally, I’m so sorry, I’d want to cry too, after you’d done so well with your hair through chemo. Have you spoken to a BCN at all? Hugs
I’ve just started taking Anastrozole and I’m fearful of thinning hair from it. Like you I’ve already gone from long thick hair to short and the thought of it not growing back properly is almost too much to bear.
LJ
Oh Sally how unfair about the hair, is it caused by the medication? I just picked up my tamoxifen and bit worried about taking it but needs must. Big hugs to you. Xxx
Yeah, unfortunately it is. Hair thinning is a common side effect of letrozole according to the leaflet and I’m losing far more than I did during chemo. Nearly 5 months, 20 weeks, of cold capping, and 4 weeks after all that’s done it looks like that was a big old waste of time. I’ve also lost my appetite and can’t face eying much, except in the mornings. The hot flushes I’d got past are back with a bang, worse than ever and I’m itching like a flea-ridden dog.
I was better off on chemo. I had none of this.
I have my meeting at Guys in the morning about the drug trial. See what joys that adds.
@Sally – That is so upsetting. Worth noting that I am sure I have read on another thread that some people have trouble with letrozole and have been switched to one of the other two AIs and fared much better. (And some do well in letrozole, and don’t do well on another.) So do report your symptoms – especially lack of appetite – to your team and see if they might want you to switch sooner rather than later. (There might be a “breaking in” process, of course, where they want you to stick with it for a few weeks before trying something else.)
In personal news: just in time for cycle 7 – last hurrah! – it seems I’ve got shingles. I just thought I had a rash on my forehead, some eyebrow acne from hair regrowth, and a sty on my eyelid from lash regrowth. The pain and weird tingling should have been a clue. Now on antivirals and curious to see if Friday’s chemo will be the full cocktail or if I’ll only be given my HER2 infusions and skip the docetaxel (an option thrown out by the oncologist this morning). My body does not like this stuff.
Bloody hell, shingles isn’t pleasant. Hopefully you’ve only got a mild dose.
oh dear Reddi sorry to hear you have shingles to add to everything else. My Husband had it and its not nice. Hope you don’t suffer too much and that the chemo can go ahead or not if thats what you would prefer.
Sally - I do sympathise with the hair loss, I read all the side effects on the Tamoxifen leaflet and one of those is hair thinning and am hoping this doesn’t happen, am only just getting used to my silver skinhead! You did so well with the ice cap too.
CDC I took my first Tamoxifen last night before bed, thought I’d start with nighttimes and see what happens. So far so good, I was able to get to sleep but did wake in the night, although I have been doing this for some months now, had a hot flush, but no worse than those I was already getting and I still have the aches and pains in joints and back from the hateful Docetaxol. So far today feeling fine… but having only had one I am sure there is more laying in wait for me. At the moment the aches and pains are the problem for me and the fact I think I have developed cording under my arm, although the seroma is almost gone. Just seems you get over one thing only to have something else crop up. When will get a break??? Now feeling like a 90 year old when I bend or get up and finding walking painful sometimes… whatever next.
Kip#xx
I never paint my nails. Such a skank 
I had meeting about the trial at Guys this morning. It seems I may not be able to do it due to the DVT I had during chemo. It depends if it was a superficial one or more serious one. I don’t know?? She has to get more info on that. Also she queried me not having rads and is going to bring that up with the MDT team as it would be to a different area as previously, the axilla as opposed to the chest itself which is where I had it before so there’s a possibility that I could yet have rads.
HI CDC - wow to have the last chemo will be great, I know its not the full amount you were initially set to have but the equivalent to 3 docetaxols seems to be the standard doesn’t it, thats what I’ve had. It will be a relief for you to get to the end of that and let your body get some normality back. I’ve found the se’s after finishing chemo are fading, just the aches still and the nasty looking nails, apart from that feeling ok, except the naff armpit which is still stiff and tender and numb.
Sally - shame about the trial, but I guess better to be safe than sorry if it turns out you can’t do it. How do you feel about having more Rads if they suggest it?
I’ve now had 2 tamoxifen and so far ok, awake again in the night, but I think that is just me nowadays, I was constantly waking up hot before I started them so nothing new there… I am sure it will be like chemo and cummulative but fingers crossed it stays ok.
Kip
xx
@cdc my oncologist told me the reason I have 7 cycles, with 4 of docetaxel, is to get 4 cycles of the HER2-targeted drug Perjeta, which they only give with chemo pre-surgery. As I said I may not get any T today. But in any case, we can virtually ring the bell together this afternoon! Hoorah!
@Kip I am sure you’ve already got this lined up, but just in case: get some cuticle oil – OPI makes a version that brushes on, and Boots has a drop applicator version – and apply it 2-3 times a day. That should help with the dryness and flaking. (I ended up taking off my nail varnish midway through first T cycle and doing intense moisturizing instead as I had dry nails before chemo and worried about not being able to treat the nails themselves.)
Thanks Reddi, I’ll invest in some, they look like they are going to dry up completely and fall off! EEK
@Georgie Gee I have been using polybalm, too – but less often than suggested to stretch it out. Usually once a day – topped up with cuticle oil – and some days just cuticle oil (when in a rush in the morning and exhausted at night). Combo makes it impossible to tease out which is helping more.
I’ll have a look at that Georgie, thought not sure its a bit too late for some of them. You do seem to be collecting referrals don’t you. Hope they get that sorted for you and also probably a good idea to wait to start Rads once you are feeling a bit stronger, you have had a rough time of late.
Kip
x
Hi ladies. Think it’s too late for my nails. Ones already off and think 5 more will be following. Sat here with them wrapped up in medical tape. They hurt and snag when bag them, wish they would just come off. Awkwardness when doing anything involving hands trying not to bang them. Xxx
Little bit of and update on me, final oncology appointment on 23rd, rads on 26th x 4 weeks. Then a break for Christmas ?. January will see me returning to work if possible but still suffering the side effect of chemo, weak arms, aches, poor concentration and not being able to walk far. Tiredness comes in waves. Feel fine one min but next fee exhausted. On a good note I have some spikes stubbly bits appearing on my head but still no eyelashes unfortunately. January will also see me returning to genetics and consequently breast and gynecologist to discuss further surgery or monitoring. Also a bone scan as I wasn’t told, chemo, rads and ovary suppression could effect me, it’s only from you guys that I picked that up. Thank you. No hormone treatment for me. Feels weird now chemo done and the routine of oncology, bloods, chemo, feel like ?. Repeat has finished, so god knows what I’m going to be like after rads. Suppose I ought to stop thinking about trying to get back to “normal” when I feel anything but. I need to find my new normal and be ok with that. Xx
red rose you will find your new normal it’s all part of the journey??great news on bit of fluff starting ??you’ll have lots of fun as hair comes back and will warn you you have to go through the ‘mullet’ look while trying to get it long again if you are ???hope yours comes back nice and straight, mines a right 80’s curly mullet???my hair was same as yours prior to all this, you just have to ???and have fun trying new styles ??sorry your nails not made it, t is a ???
everyone Shi xx
I really do hope they won’t sneak in some more but it’s a possibility and I have been booked in just in case. I will certainly celebrate all over again next Friday if needs be! Did yours go ahead Reddi ?? I was thinking of you.
So great you’ll have a break for Christmas Red Rise but sorry to see your nails are so sore and some have come off. I agree with Shi, I think we will all find our new normal. I’ve certainly been changed by my experience of BC. Im amazed it hasn’t been all bad as I’vee learnt to appreciate some of the small things in life- I’ve said it before but I remember being able to get my arms high enough to put the washing on the line after my first surgery. It was a lovely Sunny day and I will never forget the pleasure I got from the warmth of the sun and the scent as the washing billowed in the breeze. I hope we will all have many of these moments of appreciation and be able to recall them when having the s***t times. Sending hugs.
Sorry not Red Rise!!- Red Rose!