After a break, Letrozole, continued...

Your Onc sounds a good guy, @Sister.  They really DO need to work something out re the side effects tho .... it is just not ‘us’ complaining about it - but probably hundreds of thousands around the world, and more. 

I found almost immediate relief using prednisone prior and during my uke festival earlier in the year .... and still have some left over, but know they don’t like you to be on it for long periods as it can weaken your bones if used over a long time.  If it works well, next time you see him, maybe ask him about going on it one week on, 3 weeks off?  I will do the same with my Onc when I Speak to her in the next week+,  after the end of my 4 week break.

Shame you can’t take standard anti inflams as I’ve had some success with indocid and voltaren (not taken at the same time.)

take care xx

Yes, it is.  This stuff is hard enough without feeling as if you don't have your doctor on your side.

That is excellent doctoring! I'm glad you had a satisfactory response. And heartening too. So good. K xox

Okay...had my appointment with the onc yesterday.  He was running late and called me to his office and went back inside.  I struggled to get up after sitting for so long and eventually managed to hobble into his office where he'd obviously been standing waiting for me.  His smile turned to concern and he asked me if I had hurt myself to which my response was "Letrozole" which started the discussion of what he termed frustrating side effects.  He agrees that the effect is not acceptable because it will either make the treatment unsustainable due to the misery of constant pain or lead to other detrimental effects on my health as it is limiting activity.  He did say that I could have a short break but I would prefer to keep that as a next level option given that it's still early days and my cancer developed so quickly and he's happy that I feel that way.  I'm guessing that many women are keen to stop the medication, understandably.  He did also say that inflammation of the joints is going to cause problems with the soft tissue surrounding them.

So, my immediate course of action is a week's worth of prednisolone and see if that helps as I'm unable to take any of the anti-inflammatory pain-killers.  I'm also going to have some blood tests to check for any auto-immune arthritis that, although not caused by treatment, could have been brought on by the trauma of treatment.  But this is more of a ruling out as he's pretty sure that the arthritis appearing in my hands is Letrozole related.

Another possible course of action down the track is changing the hormone therapy drug. 

I go back to see him in 6 weeks if the prednisolone doesn't help.  If it does, then I don't see him for 3 months.  All in all, I feel pretty positive about the response.  While he's not promising any magic solutions, he's listened to me and not dismissed my concerns.  I have some hope that I may get some normal movement back.

I found this UK web page quite interesting. It's a bit dense, but not impenetrable. The side effects list indicating how common or uncommon they are was fascinating. I had to look up a few of the medical terms! This link is for Femara, and there are pages for other brands. Gives details of the filler ingredients etc. 

https://www.medicines.org.uk/emc/product/1029/smpc

Last night my son was cooking dinner. He called me into the kitchen for some advice. I'd been sitting down for a bit so I was hobbling over, wincing slightly from the ankle and foot pain. He says "Do you need some help walking Mum?"

FFS I'm 52! This is a nasty nasty drug. I know it's helping stop a recurrence (probably), but, GARGH...

@iserbrown I had a look at the blog. I am unclear why you want me to read it. Was there a specific post?

I bought a pair late last year, @kmakm - I must start wearing them again at night ... mine are quite snug.  I'll be taking them with me to Thredbo, for sure, too!!

This is her blog if you can't open the newspaper article

I have been fortunate to meet Lauren. 

https://laurenrusso.com.au/about/

Exactly!  You still should get it assessed as I am talking from experience.  Medication isn't always the cause. Others on here have found it sets off existing conditions.

Have you been on Tamoxifen? Don't assume the worst with Tamoxifen or other AIs we all metabolise meds differently.

Buying compression gloves may prove to be useless without a proper assessment. Oncologist don't keep you miserabe with pain when there are other choices. I'm on my 3rd AI and this one suits.

Read the Herald Sun story sbout terminal  Breast Cancer patient Lauren Russo. A beautiful girl that I met last year at  ExMed Cancer.