Letrozole side effects

Josephine66

Last monday at the age of 52 i started my daily dose of Letrozole. Fast forward 7 days and i feel like ive aged 30 years. Every bone & joint hurts, even bones in my face hurt !

My Oncologist said she was concerned i may not do well on letrozole given my pain in recent months (none of which i had before BC). 

Should I stop? Will it get better or worse. Cant sit on the loo without screeching from pain in my knees. 

I want my old self back and i want it now 😡

arpie

Hi @Josephine66

Yes, Letrozole can be a real 'Pain in the Proverbial' .... I was on it for about 6 weeks initially and found it incredibly painful - with everything aching (for a 1% chance of reducing recurrence!)  So I had a chat with my oncologist & I swapped over to Exemestane - and I've found it much less painful!

There is another thread that pretty well covers most things that might arise now & in the future if you stay ON Letrozole - should you like to check it out!  
https://onlinenetwork.bcna.org.au/discussion/19231/early-days-on-letrozole/p1

Don't be afraid to ask about alternatives     All the best  

sickgirl

Hi Josephine, am also on letrazole since about March and also have the joint pain particularly worse during the night. Once I’m mobile during the day I dont notice it so much. It seems to affect different areas at different times started worst in my legs also now just bit stiff if sat for too long. Then got bad in my finger joints and at the moment I have a particularly sore area at side of my wrist it hurts so bad to wipe my bum during the night (sorry for that info lol) my onco said if it ever got too much I could change to another med. I get fairly minimal hot flushes which I hate so worry could be worse off. I don’t know just scares me this is for at least 5 years 😫

iserbrown

We all react differently as our bodies adjust. Sometimes changing the time of of day of taking the medication can make a difference. 
You have mentioned side effects prior to starting letrozole.
My Onc has suggested panadol osteo for me.
Keep a diary and see if the symptoms are similar to what you were experiencing prior. If diet and or panadol osteo (if you can take it) and or other adjustments make a difference.  Maybe exercise!
https://www.breastcancer.org/research-news/20140131
Take care 

Josephine66

Thanks @arpie,  I  did see this thread. And yes oncologist said we could try another type. 
After all the crap with surgery, chemo and radiotherapy not too mention the weightgain and joy of juggling one boob, having to put up with intense bone pain and hot flushes coming at me thick and fast is just more than i can deal with.
How on earth do you get up and on with life, get back to work etc without feeling like a freak?
Ok @sickgirl you poor bugger. One should be able to wipe ones bum without pain. 

I did the online stat survey and apparently my 5 year survival rate is improved 3% and 15 years by 8%.

Though my oncologist did say they dont really know which treatment  (chemo, radio or meds) actually dtops reoccurrence if at all.

Feeling like a guinea pig playing russian roulette 

arpie

@Josephine66  - are you able to get out for walks, or resume any sporting activity that you enjoyed before your diagnosis?   Taking small steps towards getting fit again & resuming some pleasures in life will hopefully help you with the next step.   I have the occasional hot flush with Exemestane, but nothing like the big night sweats etc.    I take my tablets at night so they can 'work their magic' during the night ..... so maybe changing yours could help with the pain?   I also take an anti inflam tablet as well at night.  All the best with your treatment xx

@sickgirl  - funny how the pain swaps from one joint to another, eh?  My feet have been a bit wonky in the last week - but not as bad as when on Letrozole!  Hoping things settle down for you soon xx

sickgirl

@arpie it is weird how it moves around that’s for sure. Maybe I’ll try taking mine at night I wondered if that could help at all actually. I just don’t want to have to rely on pain relief meds as a constant. I wonder if it will settle as been almost 7 mths on them now. My onco suggested fish oil so might give that a try unless anyone else has any other miracle natural cures for joint pain?

Josephine66

@arpie and @sick ive had a couple of acupuncture appts and i take soooo many supplements and i fear none is helping or perhaps pain could be even worse if i didnt take supplements. 
Ill try taking meds at night. 
As for exercise, i try to walk 30 mins most days and keep as busy as possible to avoid couch/tv as long as i can. Im checking out a gym tomorrow. 

kmakm

Hi Josephine. I started the Early Days on Letrozole thread so if you've read it you pretty much know my story so far on this drug.

I'm the same age as you and have been on Letrozole for four months. I'm afraid I can't offer you much hope at this stage. The constipation I suffered at the start has eased off a fair bit (though not completely), and the mucosal dryness isn't quite as bad as it was. I woke up with aching ankles on day four of taking Letrozole and they have not stopped since. The ache has spread to my knees which I don't notice much during the day when I'm moving around but boy do I notice it at night. Last night I slept with a pillow between my legs I was so uncomfortable.

My hands became very very painful through the winter. Some days I was almost in tears with the pain and it became difficult to hold the steering wheel. However I'm happy to say the warmer weather has seen that pain pull back a lot. 

It's also got into my coccyx and my neck. I had no arthritic aches and pains of any sort before Letrozole.

As I type I'm having my third hot flush of the hour. I've lost count of how many I've had today, well into double figures. They are often accompanied with painful needle sharp pin pricks all over my hands and forearms, and now my ankles. They go on for ages, at night they can be 10 minutes or more. I hate them.

My new oncologist confirmed that for some women all these side effects can settle down after about six months. So I am persisting, taking pain relief when I need to, and trudging on. Some people report exercise helps. It doesn't seem to make any difference to me. I've also tried Krill Oil and Magnesium. They seemed to work for a bit and then stop working. The last one to try is Curcumin. As someone here says, I could just be making expensive pee, but I've gotta try. I'm also going to try taking it at night instead of the morning. Dunno if it'll make a difference but again, gotta try.

I mourn the loss of my old self, my physical health and strength, my emotional robustness. I am still struggling to accept my diminished quality of life. I accept that it's better than the alternative and intellectually I am committed to my treatment, but emotionally I just want someone to give me a big cuddle, and make it stop.

I'm taking a drug holiday in December for a month, and then will go back on it. If it's no better, my oncologist says she'd like me to try Tamoxifen. Letrozole is the best oestrogen stopping drug we've got so I hope things improve enough that I can stick to it. Or maybe I'll just get used to the constant pain.

I hope things get easier for you, that your body adjusts. Always happy to be an ear for Letrozole whinge or solution. Us 66ers gotta stick together. K xox

Josephine66

Thanks @kmakm, i dont know how youve persisted this long. Im seriously thinking of quitting after 1 week. Your right, theres no quality of life with all this crap. Right now my collar bones are aching so bad. WTF!! 
My Oncologist ran blood tests to confirm i was post menopausal and also to check my bone /joint pain. Results came back and apparently im way over the top of the range. Sorry i don't remember what the name of test was. My bone density is fine. From memory shes concerned i may have early stage arthritis. 

kmakm

I have the blood test to check my hormone levels every three months, will be doing my next one this week. I haven't heard about one to check joint/bone pain. Sounds interesting. I had the bone density test before starting Letrozole and the results were 'normal'.

All my drs seem to be test adverse. No one's ever offered me anything other than a blood test, one CT scan to check for viable veins for my DIEP, and the DEXA.

These drugs have a high drop out rate. Hang in there Josephine. K xox

Josephine66

Im going to GP tomorrow so ill ask about that test and let you know. I did hear that about the drop out rate. 

arpie

@kmakm   @Josephine66    I think you'll find that the blood test may be CRP (C Reactive Protein) - it tests for inflammation.  I've always had 'high' CRP due to my arthritis, so would expect it to still be high now, possibly higher!  (Tho there is a specific one for rheumatoid arthritis ...... ESR)

I'll definitely get it included in my next bloods, which must be due soon, methinks.

Josephine66

@arpie @kmakm yes thats it ESR & CRP. My CRP is 8.7 (range is less <5) and ESR is 35 (range is <19)
I think oncologist was more concerned with ESR. 

primek

Iinitially had really stiff joints intially. I started on fiah oil and panadol osteo. Once I dropped some gained weight from treatment and became more active within 6 months mostly I have few issues. I now wonder if some of the pain was related to taxol as I did have awful issues with thi chemo.
Anyways for some...it does get better. I found taking mine at night helped also. Why? No idea.

kmakm

I'm very stiff in the mornings but when I get moving it eases.