Letrozole - anyone out there having side effects?

A previous thread from me indicates it might have given me icky guts. They come back with gusto every time I start back on letrozole. I also get significant abdominal distension when I’m on it so I think it is the culprit.

This week I also felt (for the first time) that my cognitive functioning was quite seriously impaired. This only lasted about an hour but was spooky. I work fulltime and travel as part of my job. Sitting on the loo using up loads of loo paper gets in the way of this. I also think it must impair my nutrient absorption as when it is bad I can go to the loo six times in half an hour. But guess what? I don’t have joint pains with it.

I’m thinking of asking for a hormone profile to be done on my bloods to begin to see what my actual estrogen levels are like these days. I’m prepared to pay hard cash for this if necessary. And I guess I’d need to have the estrogen levels checked more than once - maybe at different times of the day. Depending on the results it might help me rethink the whole hormone treatment thing.

Edinburghperson

Hi Edinburghperson,

I did take Letrozole for around nine months but I am now on Tamoxifen. I did have a number of side-effects on Letrozole but not the upset digestive system. I would certainly have a chat to your doctor about this but my guess is that it is a coincidence.

Good luck!
AlexG

I have been taking Letrozole for over 6 months now, I have not had
the problems as you described. My joints hurt a bit but not too bad and my hair has thinned although I seem to be the only one to notice it.

I took Tamoxifen for a while a few years back and I find I am better on the Letrozole as far as side effects are concerned, but we are all different.

If I had a choice I would obviously rather not take anything, but after 2 recurrences I had better stick with it.

Hope your problems resolve themselves.

Take care.

Jan

Hi everyone,
I’ve been on letrazole for 4 months now as it is very successfully shrinking a large liver tumour, I’m sticking with it as long as it works. I do however have very stiff fingers, wrists and ankles. This is bad in the morning but although it eases up, I still find my wrists, (especially today for some reason, hence why I was spurred on to post today) quite painful. No bottom problems though.
Louise

Hi

I’ve been on femara for just over a year. Initially I felt dreadful just like chemo, but then I was OK. After a few months I had aches in my finger joints, but that’s all. I do think that maybe I have other problems like sleep problems but nothing major. I’ll continue with femara as long as it’s keeping the BC away.

Mal xx

I have been on femara for 10 months & had very few side effects till the last month when I started waking with very stiff finger joints every morning,doesn’t take long to wear off but is such a weird feeling, fingers feel like triggers!

Pam T

I get the stomach thing and the achey joints. My feet are so stiff and awful.
julie x

I have been on Letrozole for nearly six months. I don’t have stomach problems, just the symptoms normally associated with low oestrogen, ie disturbed sleep and stiffness. I do have tinnitus, which may just be because of the poor sleep and I have a painful neck, which is probably wear and tear which has worsened. I am thirsty, too, but that could be the calcium I also take.

Ann x

Oh, yes - and poor memory. I forgot!

Ann x

im on letrazole and have been since dec09 after being taken off arimadex as the SE were so severe, i now ache from the tips of my little finer to the tips of my…errrrrrr yes and the memory thingy!!! tummy is ok tho, one of the side effects apparently is anorexia! but im still waiting to get that.
sue x

I have been taking letrozole for over 7 years for secondary cancer in distant lymph nodes. It has been an amazingly effective drug for me cancer wise despite the side effects. Originally I was told, I could only take letrozole for 5 years but the oncologist has now said to take it for as long as it continues to be effective.

I have stiff joints, thinning hair (now have to wear a wig permanently ), osteopaenia, poor memory and increased cholesterol but am still alive and reasonably well almost 8 years after secondary diagnosis.

I don’t have any choice in taking this medication but it must be so hard for you with primary cancer, balancing the side effects against the possible preventative effects.

Take care,

Wendy