14-11-2018 08:45 PM
Quite a few of the symptoms overlap with chemo side-effects, and my pain level isn't too bad, thankfully. But I think I'll need to visit the ophthalmologist tomorrow so that they can check out my cornea, as the throbbing is getting a tad too persistent.
14-11-2018 07:57 PM - edited 14-11-2018 08:42 PM
@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.
14-11-2018 05:46 PM
14-11-2018 01:57 PM
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.
14-11-2018 09:00 AM
Thanks CDC, I think i am going to try for nightime first off, if thats a problem I'll switch to morning, its got to be taken whatever so sleeping through it might be the best. Seems crazy to be worrying so much about a pill when we've had chemo, operations etc doesn't it.
Sally - What a mare! How on earth does this sort of thing happen... keep on at them!!
13-11-2018 11:13 PM
13-11-2018 11:07 PM
Aaaagh! Makes my blood boil Sally. It’s so unfair that you’re having to go to the effort of detailing all the inaccuracies and misinformation, Surely the whole point of the investigation was to work out what exactly had gone wrong, issue a fulsome apology and explain how they’d prevent anyone else going through what you’ve had to. I hope you can get some proper answers soon. Xx
13-11-2018 05:04 PM
13-11-2018 02:34 PM
Hello, just back from Rads planning session. All painless, tattoos in place and only took about 10 minutes. I saw a lovely nurse and when I burst into tears (been very emotional recently) she was very kind and talked me through my diagnosis and treatment adn explained its all normal to feel this way at Rads as its another treatment but also the light at the end of the tunnel. They got me to fill out a form to say how I was feeling and will offer me some therapies and counselling should I want it. Annoyingly before I could start the planning scan she said they hadn't got my results from the ANC (panic moment as thought I had been given someone elses last week) so she had to see the ONC as they had written I needed Rads to middle of chest. ONC told her the nodes were clear so I don't need the rads to the middle of the chest after all! Good job she checked. Wish they would talk to each other. Now going to start Rads on 29th November for 3 weeks. Still haven't got the Tamoxifen as the GP hasn't sorted it yet. I hope I do as well as your Mum does CDC, can't decide whether to take them last think at night or first thing in morning?
13-11-2018 02:10 PM
12-11-2018 06:31 PM
12-11-2018 05:37 PM
12-11-2018 05:28 PM
12-11-2018 01:32 PM
12-11-2018 09:41 AM
Hi Ladies, sorry for not replying over the weekend, had Mum to stay as OH and step dad took a boys holiday for the weekend. Been very busy.
Georgia Gee - hmm your seroma problems sound like mine, I am getting movement back in arm and the seroma is definately going down but its still there and tight around the joining bit from armpit to breast (or what was my breast). Its not painful but tight and still feels like a lump when I put my arm down. I guess I'll keep on with the exercises and see what happens. I keep my heart cushion pressed under there most of the time and that helps too. Just hope my arm movement is enough for the CT scan tomorrow.
JacB - good to hear that your seroma went eventually, although not great about the scar reopening. Nothing is ever straight forward is it.
Meesh73 - your post made me smile... I imagined sticking to the fridges in the supermarket with my knicker magnet.. I haven't read any very convincing posts about it helping but worth a try sometimes I guess. I haven't got the Tamoxifen yet as need to get to GPs to pick it up. Do you take yours in the morning or evening? Any ideas for whats best?
CDC - how did the chemo go, hope you are fairing ok this time round.
KTK - how are the rads going?
I've got CT scan tomorrow and rads planning, looking foward to getting this bit started, but actually after the euphoria of gettting good news on Thursday I've felt a bit down really, it seems its up and downs all the way doesn't it? Just now feels like another huge hill to climb and then the unknown after that?
RedRose - how are the nails? I'm going to remove my nail varnish and see whats what with mine, they keep breaking very short so not exactly attractive at the moment!