Oh Sheelagh, what a bitch!
Deep breaths… I might be able to shed a little light on this because I’ve had somthing similar… have they tested your thyroid?
I had some anomalies come back on a blood count and when I was diagnosed with bad boob, my gp went into full on catastrophe mode, totally freaked out and said “ultrasound fast track”… possible thyroid cancer!!!
Turns out, it’s nothing sinister. Are they sending you for ultrasound?
Mine showed inflammation in the area but they said it’s not cancer, nothing close to it. It’s possible thyroiditis in my case but could just be lymph issues from all the boob stuff… they are keeping an eye on
me and will re-test again in a month.
A good ‘bedside manner’ used to be part of a doc’s training… a lot of these white coats need to have a word with themselves
Had the same thing with anastrozole. First prescription brand Key Pharma was good.
Second brand Amarox? was dreadful- pain, cluster headaches and I felt really teary (see above )… told the gp and I had a merry go round trying to find another brand. I’ve got Sun pharma now and it’s better than the worst but not great.
I gave myself a break for a few days. It helped. Bugger what your nurses say- that’s what they all say and, frankly, they don’t bloody understand how much this stuff hurts! So… if you are really struggling- give yourself a few days off, at this stage, it’s not going to affect your stats and at least you’ll have an easier few days to deal with the other issues from radio.
I had 4 days respite and it made all the difference. Get back to your go and ask for another prescription, explain that this new brand doesn’t suit you. then take it to an independent pharmacy (rather than a big boots for instance) and ask what brands they have… that’s what I did.
I’m so sorry you are having a shit time. It sucks but you can’t carry on in that dirt if pain. Get a new prescription.
At the really least, it will tell you if it IS this brand that’s causing it, or just letrozole in general.
There are other AI’s. If you keep struggling- speak to your onc and maybe try mine (anastrozole) it’s not quite as aggressive but works just the same?
Good luck hon. Dont put up with it if it’s that’s bad…
Hi, I’m on Accord for letrozole and asked my pharmacist to only give me that brand. I think it depends on their supplier, but they should try and help as it’s for 5+ years. Good luck and hope you can get it sorted xxx
Couldn’t agree more Amanda. Accord seems to be a good brand for AI’s. I’ve read a few posts on this and it’s one that seems to tolerated by most of us. I haven’t managed to get that brand, so far, but I might try and source it next time. I’ll keep you all posted.
I’m on Sun Pharma and it’s ok. Not as good as Key Pharma though hay ho.
Hope your sore throat doesn’t linger too long let them know tomorrow. Perhaps they can adjust your zaps a wee bit in that area
Thank you lovely xxxx
I spoke to the radiologist team yesterday before my next session and they checked my throat on the xray for inflammation. It all looks fine so that was reassuring even though I can still feel it… they will monitor it every day. So I’m feeling ok about it at the moment, taking some paracetamol etc. The team I see daily are amazing, they are so caring and calm, it’s really helping me get through this. I’m 4 down and 11 to go
Thanks for all the support I slept so much better last night and that makes me feel more human and less emosh and crabby!!
Hope all well with you lovely ladies, onwards we go
I just got my next oncologist appointment for 11 December, hopefully that’s the last one… 🩷
Still in pain today so I decided not to take the Letrozole tablet. The doctor has sent the prescription to the chemist already! Simon popped in there on his way to work and they only have the brand I don’t want at the mo so they have placed a new order with their supplier which should be here by the end of the week. The brand which I have had such bad effects from is Amarox, seems strange that Ali suffered too with this brand
I have a follow up phone call tomorrow with the radiology nurses and oncologist appt on 3rd December.
Good luck Charlotte, I hope you get the right tablets. I would definitely stop taking them until you get the brand you want. In the short term, it’s not going to have a big impact. Day 5 done today … apparently I get a rest day next week because the machine needs servicing…. Planning a full day out
Lots of love
FWIW lovelies I’ve been using Parmacy2U for ages (great service!) and they automatically supplied me with Accord. I’ve no idea if applied across the board?
I use those for my mums tablets and they have been brilliant @bellalasagne1
I didn’t want to have lots of different tablets arriving at my house so thought I’d try the local pharmacy first! To be fair they have been very understanding.
Had a follow up with radio team today and ended up having to go back to the hospital to have the blisters cleaned and treated. They told me that I can turn up anytime if I’m concerned about the skin at all and the invitation is open until it’s fully healed which could be months. I can’t fault the treatment I’ve had even there though this particular North London Hospital doesn’t always get positive reviews
Got 2 weeks off work now as I can’t wear any form of bra/bra top and I’m not leaving the house with my boobs swinging round my waist . I’m gonna do a few hours from home and see how I go. Hopefully the back will feel better soon so I’ll be a new person returning to work!!
It really is very painful @bellalasagne1 it’s basically like a bad sunburn but under the poorly boob which makes it worse as there’s no air getting to it easily!
I’ve been given something called Flamigel RT to put on it which is really good at alleviating the soreness and stops the itching. Hopefully will sort itself out soon
Poor you, when did the blisters start? I assume this is from the radiotherapy? It sounds very painful. Hope you manage to get some rest and heal. This is the journey that keeps on giving
xxx
Hi Amanda, yes this was from radiotherapy. I had 5 sessions and on day 10 after I’d finished I felt an itchiness. By day 12 small blisters had formed so I contacted the RT department who gave me a gel. 2 days later I had to go back to have the area cleaned as there wasn’t much improvement. I now have one huge exposed/burst blister which goes from one side of my under boob to the other. It’s not overly sore, just very uncomfortable but I am very wary as I don’t want to get any infections I have to pat the area to keep it clean and dry and not rub but the skin is just coming away and is very thin. This sounds disgusting I know so sorry for the detailed explanation!
Oh Charlotte, it sounds horrible but hopefully it will heal quickly and not cause any problems. I’m doing ok thanks, I’m just halfway through RT, 8 more to go over the next 2 weeks. I’m a bit achy and sore, but fully aware that side effects might build after the treatment. I’m probably drinking too much red wine but have had a few social events and enjoy being out! So mentally, that’s really helping me along with planning trips and meeting friends I’ve not seen this year. I’ve decided there’s no point waiting …
I’m glad to hear you’ve got some time off, I hope you relax and remember to put yourself first. Sending big hugs and wishing you all the best xxx
So sorry to hear you blistered Charlotte. Was that during or after the treatment ? I’ve done 5 out of nine so far. My appts are all around 7pm and I hadn’t envisioned how tired I would feel. Hey ho ! Sounds like HT is a bit of a nightmare for some of you. So far I’ve been fairly ok with them . I have noticed that they have given me a different brand this time. Thanks so much misswoofwoof for the neck reassurance . I’ve put it to bed for now. Meeting my new GP on Wed which should be fun. He has no idea what he’s in for. Poor man. . Sending love and hugs to you all xx
)… told the gp and I had a merry go round trying to find another brand. I’ve got Sun pharma now and it’s better than the worst but not great.
hay ho.
let them know tomorrow. Perhaps they can adjust your zaps a wee bit in that area 
. I’m gonna do a few hours from home and see how I go. Hopefully the back will feel better soon so I’ll be a new person returning to work!!
