Joint pain, muscle stiffness

OTISMYCAT

Hi all I  am 5 weeks post radiation for invasive lobul ar carcinoma. 6 lymph nodes removed. I am on letrizole. I started getting joint pain and muscle stiffness in my knees shoulders hips and muscle tightness. When I mentioned it to radiation doc she said it would not be from radiation to breast area. Has anyone experienced similar symptoms. I had a mastectomy. No chemo.

arpie

Sorry to hear this @OTISMYCAT .... How long have you been on the Letrozole?

Sadly, many of us do get aches & pains from the hormone suppressing tablets, but with gentle exercise & over the counter meds, it can be reduced ... I'd suggest chatting with your Medical Oncologist about it (and/or your breast care nurse, if you have one.)   

Your Onc may also suggest changing you to Anastrozole or Exemestane (after 3-4 weeks off Letrozole), to see if they have less side effects.   I started on Letrozole, then tried Exemestane & finally went to Anastrazole - and was on Anastrazole for 5 years (stopping shortly!)  it had the least side effects for me xx

take care & all the best xx

OTISMYCAT

Hi arpie thank you. The aches started before the letrizole. I very been on it for nearly a month. I started on osteoeze helps a bit. The worst side effect from letrizole is hot flushes. I was on hot for yrs when I stopped them the flushes started but oh boy these ones on letrizole are big. I end up wet. I'm seeing my oncologist next week so I ll mention it.

arpie

That is really Weird that the aches & pains started before you started Letrozole!  Were there any lifestyle changes before that?   You didn't take up going to the gym?  Chopping wood? (only kidding!)   It's just weird! 

Hot flushes are a real pain - but there are a few meds that can help there too!   A patch called Oxybutynin can help & there are other tablets too I believe ...

Here's one recent discussion on hot flushes ...
https://onlinenetwork.bcna.org.au/discussion/comment/224193#Comment_224193

take care

Tri

hi @OTISMYCAT
Your situation sounds very tough 🌸🌻 and it’s great you can talk it over with your oncologist. I experienced aching joints (mainly ankles) and calves after initial chemotherapy, surgery and radiation therapy.  I went on to have additional immunotherapy and chemo after radiation therapy and these aches started just before I started taking Letrozole, so it was hard to pin the ongoing aches on Letrozole.
I finished all other treatments in April and until about a month ago I was taking Letrozole. I started a 4 week break and have noticed the evening joint ankle aches have almost disappeared. 

I don’t know if they would have disappeared even if I hadn’t had the Letrozole break but I’ll able to see how it goes when I restart Letrozole in a week or so. 

It’s great hearing about @arpie’s experience (where she found a therapy that worked well for her) and I do hope that’s also the case for you. I hope you can manage with the aches. I found it was helpful to start yoga and also when it was very sore, would take Panadol Osteo or Nuromol. Sending you all the best, 

OTISMYCAT

Hi I was taken off letrozole monrh ago by medical oncologist. Am now on exempting. Just started. 25mg two daily. Not sure when to rake them. Anyone else give me advice. I am on bone infusions every 6 months for next three yrs and vit days two tabs daily for ever. Did your hot flushes get worse or better on new hormone. I also have become over sensitive to heat since radiation. Ughh tough business this breast cancer. Take care all.

Abbydog

Which of the Aromatase Inhibitors suits best, is different for everyone.
I started on Letrazole and changed to Exemestane. I'm only on one tablet a day. I take it at bedtime.
I've been on that for 3 1/2 yrs.
I think I have gotten used to it. The side effects seem less.
I had muscle tightness, particularly in the upper legs, front and back. It was painful and difficult to pick something off of the floor. This seems better now.
Poor tolerance to heat, is continuing, and also hot flushes.
I always carry a little fan. (from Temu)
I don't think Radiotherapy can cause heat sensitivity. Probably it is the tablets.
 I'm also on infusions (Zometa), to increase my bone density, 6 monthly.

OTISMYCAT

Hi i will start taking it at bedtime. Hopefully may help.its not nice to be having these side effects but good to hear there is someone going through it the same as me. Sorry you are. I will stay positive and try some different things to help. The joint and muscle pain is annoying. But i keep doing things as normal. Cant sit around feeling sorry for myself just get on with life. Nice of you to answer my  questions. Take care hope you have a nice xmas.

Tri

Hi @OTISMYCAT sounds like you and your oncologist are doing what you can to find an aromatase inhibitor that works best for you 🌻 🌸🌺
I take my tablet around dinner time in the evening.
On the point about heat sensitivity after radiation therapy, I didn’t feel unduly hot but I covered up from the sun once I had a bit of exposure (to top up my vitamin D) to avoid heat rash. 

Hope your symptoms settle, and they don’t disturb your sleep overnight. Everything is better when I feel rested! Merry Christmas to you 🎄🌻

OTISMYCAT

Hi all hope you had a nice Xmas. I am now on aromatase 25mg 1 a day. I am having a tough time dealing with joint pain. Especially  my shoulders wrists knees and hips.my muscles are also stiff. Hot flushes not as bad as when on letrozole. Night time is worst time. Can't sleep with the pain.i end up having to have a nap later in the day. I get up in the morning feeling very stiff but life goes on. Just keep on doing what I need to do. I have lymphodema in my left arm so here in brissy it gets very hot having to wear my garments. Oh well hope everyone's new year brings new hope for cancer research.
 

Tri

hi @OTISMYCAT great to hear the hot flushes are a bit better but I am sorry to hear about the joint pain- it cannot be easy ❤️ on top of lymphoedema.
Sending you lots of positive energy. 

OTISMYCAT

Thankyou take care

OTISMYCAT

Hi all. I have been on exemastine for nearly 2 months. Now joint pain is vertually gone. Hot flushes are not as bad. Mainly nights. Have heat sensitivity and tingling in fingertips and feet. Weird. Just get up and get on with day. Not sleeping though. I dont sleep anymore than 2 hours at a time then wake up. Mentally tired. Try nap during day.Take care.

arpie

GREAT that the aches & pains aren't too bad & the hot flushes too @OTISMYCAT... but the lack of sleep is so annoying, eh?

It is SO muggy just now, even here (where we don't normally get the muggy weather!). It makes it very difficult to sleep.   Even just a small fan (desk fan) moving the air can help cool it down a bit.... 

take care, all the best

Tri

hi @OTISMYCAT I am really happy to hear your joint pain is almost all gone!! Fantastic 👏🙃🌸🌻 good on you for discussing the side effects with your doctor and trying an alternative aromatase inhibitor and what’s more - it’s so encouraging to hear that it appears to have been a change for the better.  Thanks for sharing.
I am sorry about the sleep interruption though - I have fortunately dodged that side effect (except in the days when my neuropathy sometimes woke me up, now in the past). I do try really hard to keep my activity levels high because I think it probably helps me on the solid sleep front. 

Hoping your lymphodaema is improving too 🌻

OTISMYCAT

Hi all omg how many ladies have had to change their hormone blockers because of side effects. Im on second one. Side effects are if anything worse than first one. Excess sweating..hot flushes are a given..are joint pain also a given no matter which one you take. Sleep disruption..sensitivity to heat in finger tips..tingling too.I am going to talk to medical oncologist and find out my options.I am 7 months post surgery..4 months post radiation. Feeling a bit overwhelmed atm by everything. Take care.