Breast cancer

Affected by breast cancer? Join this group to share experiences and ask questions to people who understand what you're going through.

Agreed 4 week Letrozole break - diary of findings

moomy
Posted by

Hugs xxx

Moomy

moomy
Posted by

As for lines, hubs had horrendous ones at his Grammar school;

’there is nothing so disturbing to a well regulated mind than to see a small boy who ought to know better, disporting himself at inopportune moments’

he said if you got 100 of those you knew about it!!!! 

Hugs xxx

Moomy

AnnJac
Posted by

By heck you certainly would know about those!  And what a waste of time doing lines was.  Much better to put them doing good works - cleaning out the ink wells or something.  Polishing the trophies.  . .etc

Anne xx

moomy
Posted by

I quite agree! My school was rather different, if caught you had to report yourself to whichever member of staff the prefect chose, and you felt extremely small doing so! (Yes I did, once!) The worst punishment of all was to sit in the entrance hall outside the headmistresses office and know she had been informed. (No I didn’t!) So relatively short punishments. 

hugs xxx

Moomy

AnnJac
Posted by

Day14:

  • Still getting flushes and sweats (but to be fair was having these before Letrozole!)
  • Foot drop - no improvement
  • Achilles pain and stiffness - no improvement.  Think it is a bit worse.
  • Walking with aid of rollator - can no longer go very far.  Walker has prevented falls though particular in hospital where super non slip floors play havoc with my dragging foot.  I have to try and remember to walk making sure i lift that foot quite high.  A bit like a clown walk!
  • Can only go upstairs if there are handrails both sides and can haul myself up.

I am now becoming certain that not Letrozole related.  But will stay off for another 14 days to be sure out of my system.  Bone scan after radiotherapy (team does not think there will be any issues but cannot refer me to a neurologist until secondaries have been ruled out.)

A bit down as cannot really go outside much anywhere.  Went to Tesco yesterday and balanced basket on Walker but really struggled to get round shop and back to car.  Luckily driving is not a problem now i have changed my car to an automatic.

Will let you know if any improvements  . . . .

Anne xx

moomy
Posted by

Dear AnnJac,

I'm gutted there are no improvements, I really wish there were! 

Thinking of you

hugs xxx

Moomy

seaspirit44
Posted by

, so sorry you are struggling so much and it appears to be getting worse, and that you have to do these journeys alone. Big hugs xxx

Onwards and flatwards (don't do hills) and keep walking if you can!

WhatHappened
Posted by

Owww dearest

This is so unfair, I can't see why they can't send you to Neurologist or at least start the ball rolling with getting an appointment, this way you are 'in the queue' so to speak.  There are so many things this could be from minor to serious, I think the quicker this is looked into the better for you. 

I think this journal on here is very good, as you can look back to symptoms etc.

Thinking of you and sending gently hugs and very best wishes xxx

Caz90
Posted by

I have been taking Letrozole for 17 months and my joint pain is getting worse especially in my feet, toes and soles also my hip. Currently I’m taking Dr Reddy, I’ve tried Cipla, and another couple. It’s really bothering me now and I’m not certain what I can do. Any advice would be appreciated. I live in the Hull area.

AnnJac
Posted by

I don't have pain apart from Achilles tenderness and no longer think my issues are letrozole based.

Other ladies on here recommend glucosamine,  cod liver oil, vit d and b12, and the antihistamine claritin.  Might be worth a try?

Not far from you - I'm York and currently having RT at Castle Hill. 

Do hope you find something that helps.  Some ladies try different drugs so could be worth talking to BCN.

Anne xx

AnnJac
Posted by

Day 21.

No improvement unfortunately.   Even finding moving and turning over in bed difficult now.  Full body bone scan scheduled for 5th July.   Not worried about that just need to get it over with.

Now half way through RT.  That going ok.

Anne xx

moomy
Posted by

I’m gutted for you, AnnJac, I really was hoping it was treatment related. Just a thought, I know neuropathy affects some folk worse than others after chemo and associated treatments; might you be one who has been badly hit? 

Hugs xxx

Moomy

chellesimo
Posted by

I’m sorry to see that you haven’t had any improvement. I was sure it was going to letrozole related, knowing how badly it effected me. Hope they come up with some answers for you after the bone scan. X 

Chelle 

AnnJac
Posted by

I was hoping it was treatment related too Moomy and Chellisimo!  But at least we are ruling it out.  I had wondered about neuropathy too but started at least 3 months after chemo finished.   So would have thought some symptoms whilst on chemo?  

I do think it is neurological of some sort.  Something is affecting my nerve functions.  I suspect it may be a long search for answers.  Going on holiday to Anglesey with all family on 12th july.  We have booked a big house with big garden that is a 10 minute drive from a fabulous beach.  I will manage there as we are not intending to do much apart from play in Garden and on beach.  Dictated by 21 month grandson.  But when we get back I am going to look at maybe a mobility scooter so I can get out and go places.   Don't want to become a prisoner at home.  I can drive but cant walk far when I get anywhere.   I only live a mile  and a half from centre of York and miss being able to walk in and sit by the river and meet friends.  And hubby and I can't have a holiday just the two of us if I can't get around.  We can just sit and look at each other at home!  I can sell it on when I'm better but in the meantime I need to be looking to my mental health too.  Breast cancer at back of my mind - this has taken over. 

I do think whatever it is has been set off by chemo though - I think chemo has triggered something.  

Trying to keep cheerful and upbeat but very hard at times.  Little grandson here this weekend with his Dad so he makes me smile.

Thank you all for you fabulous support xx

Anne xx

seaspirit44
Posted by

, so very sorry you are no better. I do hope you manage to enjoy your holiday, and that you get some answers from the scan. I think you are amazing the way you are coping with this. Big hugs xxx

Onwards and flatwards (don't do hills) and keep walking if you can!