Letrozole for Cancer. Lots of aches and pains.

[Yoohoo778611]

Posted on the General Health Board but no replies.

Over 2 years ago I started on letrozole after having breast Cancer.
Since I started my aches, pains and general stiffness is now getting worse.
Does anyone else get this.
Thinking of asking if I could stop as I feel older than I should I'm only 63
but feel older than my mum. I have tried different makes.

OP

I’m in the same boat. I am very stiff with lots of aches and pains.
Other side effects include fatigue, depression, high cholesterol, osteopenia and over active bladder.
Ive been on this a year and a half.
I would love to stop but I’m afraid of the breast cancer returning.

@graceinspace999 I never thought about cholesterol and the bladder.
Fatigue is also debilitating.
How my thinking came about was on a plane last week. The lady next to me was also given letrozole but stopped after 2 years with the consultant in agreement. And her symptoms near enough disappeared.
She was my age same type of breast cancer.
Think I will contact either my gp or see if I could speak to the consultant.

I was on Arimidex which is an aromatase inhibitor like Letrozole for 5 years.
It was miserable. Pain, stiffness and brain fog.
Because I was 100% ER+ I was determined to do the 5 years - I then moved on to Tamoxifen for 10 years. (I am 15 years clear.)
All I can say OP is that yes it can make you feel bloody awful - but it is gold standard for post menopausal ER+ women.
Once you finish the course all of those side effects go away - none of them are permanent. Hang in there.

Sorry to hear you are experiencing these aches and pains. I think you should press for an appointment with your consultant to discuss the options.
After my surgery and radiotherapy I had tamoxifen for a couple of years then switched to Anastrozole. I think this was because I discovered the cancer just after menopause. Felt fine on the Tsmoxifen but got worse and worse on the Anastrozole with aches in my ribs and hips, lower back seizing up etc. Felt terrible. The consultant sent me for a bone scan ( not a dexa scan for bone density) in fear of secondary cancer but fortunately it wasn’t. I struggled on but had to stop after nearly three years on Anastrozole. It’s a difficult situation, I was terrified of the cancer returning so felt I had to try and complete the course of medicine, but I was feeling very unwell and quality of life was deteriorating.
So get some skilled advice from your consultant to see what the options are. In the meantime make sure you self care. For example treat yourself to some very healthy food for one meal of the day. Engage in gentle, stiffness reducing exercise and gentle walk to help your body feel better. Find a distraction you enjoy and do it regularly.

@Gtsr443 I'm to be on it for another 7 years.
I've got a telephone appointment with my GP this afternoon will go from there.

@JussathoB I try to get a good walk each day.

Hi. This happened to me. When I first finished breast cancer treatment I was put on Tamoxifen as they weren't sure if I was post menopause. They did a blood test, decided I was and put me on letrazole. The joint pain was awful. I was hobbling around like an old woman and had to take pain killers before my Pilates classes. I told my oncologist and she put me back on Tamoxifen and the pain went. No other issues either.

The best place to ask advice about this type of thing is on the cancer support thread in the General Health section on Health. The lovely people on there have seen and endured it all and will likely have some very helpful advice.

I also take Letrozole, which has caused a fair bit of pain. A month ago I started taking Clarityn, an antihistamine tablet. I had seen other women comment that it had helped them and initially I didn't see how it could help. Well, would you believe it actually helped me, I am annoyed it took me so long to try it. I take glucosamine daily for joint stiffness, magnesium for hot flushes and leg cramps, and antihistamine which deals with the worst of the letrozole pain. It is worth giving it a try and if it doesn't work maybe chat with your consultant if one of the other AI's might be a better fit for you.

I'm on letrozole and zolodex. Switched after not tolerating Tamoxifen. I've had great pain relief and reduction in joint pain from cold water swimming. I go once or twice a week and it's made such a difference. I do recommend it.

They wanted me to stay on it for 10 years but I couldn't face that. ( My son was 1 when I was dx-ed so I was trying to raise a toddler at the time.)
I met with the onc after 5 years of Arimidex and opted instead for Tamoxifen for ten years. I tolerated Tamoxifen very well.
Only issue in post menopausal women is the womb lining thickening. I had a biopsy when I stopped Tamoxifen because I was bleeding a bit for a few weeks but all is fine now.
Hope you get to see someone soon.

Gosh another seven years. I didn’t realise they sometimes recommend it for so long. I was told five years treatment. Although I do understand that breast cancer varies and treatments are tailored to the individual to a certain extent…

Just spoken to the GP he is going to contact my consultant.
Thinks I could get a change of medication.
Advised not to stop taking until see someone.
Hopefully not too long to wait.
Even my GP thought it should be 5 years but 10 years is what all the letters say.
I did try my MacMillan nurse week before last still waiting for a call back.

I think its best to discuss with consultant, mine is for Tamoxifen for 10 years but I am younger. The Predict Breast model available online gives the benefits over 5, 10 and 15 years from hormone therapy and benefit means being alive at that point rather than dead. I checked what benefit meant. Though there is some overlap with chemo benefit in the model.

I have found vitamins help with aches for me. I also swim which helps me feel fitter around 2 miles a week but anything helps and can build up. There is a Facebook Group something like UK breast cancer which has lots of people on though varies by person what side effects from what. Tamoxifen I have mood swings, joint pain, hot flushes, insomnia but that could all be menopause. It's all annoying but liveable with though if there was little benefit I would not take. In my case there is around a 10% benefit.

I hear you! I've done almost a year and a half so another 8 and a half years to go, assuming my bones are ok. I've found the Cipla brand to be my worst enemy as that made me ache. It's mainly the stiffness for me, I was never super flexible but was always fit and active, now I feel about 90! Keeping active helps but then, I sit too long and I make those noises getting up.
I was premenopausal at diagnosis so assumed I'd be on Tamoxifen but I have Prostap injections to suppress my ovaries every 12 weeks and the letrozole. My oncologist told me this is the most potent to reduce recurrence risk but bloody hell, it makes me feel ancient.