Letrozole and abemicilib and pain

Hi Musicmumma,

I'm 58 and had my mastectomy in July 2023. I also had chemotherapy and 15 sessions of radiotherapy. I've been on Letrozole for a month now and no side effects so far apart from some really weird aches and pains all over my body. For now it's nothing I cannot tolerate, but it's kind of disturbing. I started Abemaciclib a couple of days ago which made me very nauseous for a while and a bit tired. I will feel lucky (given the situation!) if side effects don't get worse. My oncologist told me that the pains and aches are normal side effects. You can ask your oncologist for some painkillers if you find it hard to cope with them. I also have that numbness on the side of my mastectomy and occasional pain which I was told was to be expected. So don't worry too much but speak with your oncologist just for your piece of mind. All the very best with your treatment!

Lana xx

Peace of mind. Also, it's good to know that we are not alone in what we are going through! xx

Hi Lana..thanks for your reply. I'm same as you, although I ended up in hospital and was taken off chemo as it was damaging my lungs unfortunately. I knew I would get aches and pains and oncologist said take pain relief, which I am. Some days are worse than others plus I've had bad diahorrea with the abemaciclib so they lowered the dose. As for the Mastectomy site I thought it would ease after almost  year but no such luck! I will keep telling my oncologist how the symptoms are. Good luck to you too   ️

Hiya

im a little while ahead of you with treatment and I  still have the symptoms/ side effects you describe ! My mastectomy / radiotherapy area is sore at the ribs and the underarm / back of arm area still has some numbness. I’m on cycle 14 of Abemaciclib and still have some gastric issues , I’m on 100 mg x2 

I have loads of aches and pains but put that mainly down to the letrozole which is worth changing brands to see if one is better suited to you than others , I’ve found a couple brands which give lesser side  effects 

just another thing in case it’s relevant at any point , my oncologist says over 90% of her patients on Abemaciclib are on antidepressants, this could be down to many reasons including the drug I guess but people don’t talk so much about the mental side effects of drugs 

I’m in my forties and I had surgery in November 2022

hugs xx

Hi Dolly...

• Thanks for your reply not that I'm glad you're suffering! But glad it's not just me! Seems it doesn't always go that quickly! I'm exactly the same with pain areas and numbness too!!! I'm already on Prozac been on them years but had started taking every other day..now back to one a day as I felt so down! I will see how it goes and if the pain is constant, I'll have aword with my oncologist . Thanks again...let's hope we both don't keep suffering! Much love  xxxx

Hi Musicmumma

march 2023 had mastectomy and lymph nodes removed I had chemotherapy, followed by radiotherapy started letrozole november 2023 then December 2023 started abemaciclib I went through chemotherapy and radiotherapy no problems at all, since on these tablets aching joints terrible acid reflux and sleeping most of the time losing weight and generally feeling awful. I have been taken off abemaciclib for a break , I am now due to have a gastroscopy in a few days time and my oncologist will decide after this procedure and results whether to put me back on ambemaciclib but they told me they will reduce the dose.  But I definitely cannot come off the letrozole

Hi Janey...sorry to hear how much your suffering. I'm still getting diahorrea not as bad though. These aches and pains are awful though. I also hate feeling so tired most of the time. I'm just hoping it passes! I want my life back! Look after yourself.....xxxxxx

Hi I had mastectomy 2 years ago and still have slight numbness.   I take a supliment for joints and vitamin D  which help me.   Small price to pay for still being with my family. 

Hi all. I created a similar thread a while ago as I was struggling with letrizole/ambleclib and rib pain. I'm afraid to say I'm on number 19 of Ambleclib and just over 15 months of letrizole. I'm on 150mg X2 . The pains have not subsided and the rib pain I have (mastectomy January 2022,) has gone worse. I am awaiting results from a nuclear bone scan. It's taken me over 12 months of mentioning the pains. My oncologist nurse tried to persuade me it was all in my head! 

I now use a heat pad I bought online to ease the joint pain in my hands and knees. It does help when combined with pain killers.

I still get upset stomach from ambleclib but now try to avoid dairy and eat a banana first thing in the morning to try to calm my stomach down. Sometimes it does help.

Hoping that the banana suggestion might help a few of you that are experiencing the upset stomach side effects.

Sending hugs to you all going through this.

Hi Fe1..I'm definitely not alone then from the replies I have got! Obviously I know we need to take these medications but always horrid side effects!! My rib pain is really sore at times and I think it was wrong of your oncologist to say it was all in your head!! Bananas sometimes give me indigestion  I love them but they don't always love me!! I do hope all your scans are OK. Keep us posted and take care xxx