LETROZOLE

[Rosebud1803]

Hi all, I had surgery last December I had a mastectomy with immediate reconstruction. I didn't require chemotherapy nor radiotherapy and feel very fortunate.

My tumour was receptive to oestrogen so I was put on LETROZOLE , my first 'brand' gave me terrible joint pain. I am taking a different brand now ,but I am now quite light headed most of the time, but no joint pain thankfully and back at work now .

I am just wondering wether the symptoms ease with time ( only started taking them in February 16).

Or is it worth while trying different brands .

Best wishes XX

[linlow]

Rosebud1803 I can't comment from a personal point of view but my mother was on Letrozole and her side-effects just seemed to compound over time. However she has stage4 cancer and did not try alternative brands. I don't know if this would have made a difference. She was also swapped to Letrozole after a period on Tamoxifen cancer.gov/types/breast/res... (although I might be inclined to take the research with a pinch of salt as it was funded by the maker).

Not having to submit to chemotherapy nor radiotherapy treatment is a fantastic result for your future but have you looked into lifestyle changes to avoid recurrence? I have done loads of research but don't want to overwhelm you with everything I have found in case it might bore or offend but can I suggest you check out chrisbeatcancer.com - a very comprehensive site created by a survivor.

[Rosebud1803 in reply to linlow]

Hi thank you for your reply , I am happy to look at any information, I have no family history of breast cancer. thankyou I will look at that. Xx

[linlow in reply to Rosebud1803]

You are more than welcome. I have been looking into alternative and adjunct therapies since mother's cancer returned 5 years ago so have done a lot of research. There is a good 'starter video' here that explains some simple strategies for moving forward drhyman.com/blog/2015/10/02...

There is an awful lot of information on Chris Wark's site so let me know if you feel overpowered or you want any more suggestions to look at. Feel free to PM me if you prefer or simply have any questions you want quick answers to.

[Mandywilson]

Hi .. I have been on Letrozole for six & half years .(i had a double mastectomy chemo & radiotherapy .) At first I had so many of the side effects I thought I wouldn't cope , but now the main one I am left with is hot flushes and insomnia.... I go to the gym & do tai chi , I feel this has helped my joint & muscle pain ...

We are all different , and cope differently with our medication & side effects .. All you can do is persevere and if you're still not happy have a chat with the breast nurse .. Good luck xx

[linlow in reply to Mandywilson]

Mandywilson have you come across turmeric as a painkiller? It might well be the answer to your aches and pains since research shows it to be more effective than many prescribed medications including something like 34 different painkillers and steroids. The bonus is that is also used as an adjuvant in the treatment of cancer ihpmagazine.com/curcumin-as...

[Rosebud1803 in reply to linlow]

Hi thank you no I haven't I shall look at the link xx

[linlow in reply to Rosebud1803]

Hi Rosebud

This comment was actually in response to MandyWilson's - but turmeric is one of the things I would have suggested you investigate. It is a wonder-drug powerhouse of the plant world and has been used for thousands of year in Ayurvedic medicine. To get the best out of it isn't quite as simple as reaching for the spice rack though

[Mandywilson]

linlow .. Hi .. I have heard of it but never tried it .. Up for anything . So thanks x

[linlow in reply to Mandywilson]

If you have access to fresh turmeric this might be best as it has its own bioavailability mechanism otherwise you need to look at how it is absorbed. The liver, its first port of call after the gut, sees it as something that must be eliminated from the body so, in its simplest form, will eliminate it before it has chance to make its way into the bloodstream. This is why many who report no benefit have no success. Curcumin is the active ingredient but needs to be made bioavailable with fat/oil or piperine (the active ingredient in black pepper). The oil helps it bypass the liver and piperine survive the journey through it. There are lots of recipes on the internet for making golden paste. Alternatively it is readily available as a powder/capsule/liquid through health shops and sites like Amazon. There are many options but I can give you no advice which is best other than that you need to look at something that has a 95% concentration (and probably mentions bioavailability).

Good luck, I hope that it does work for you.

Willow bark and comfrey are also good painkillers but I don't know how they would co-relate to your current treatment.

[Hidden]

Hi Rosebud1803. I have been taking Letrozole for three months now. My side effects have been tolerable, just some tiredness in the afternoons, some pain (during sleep) along one femur until I turn over, and only a few very brief times -- just instants -- of light-headedness. I have another chronic condition, though, that could account as well for the light-headedness.

Do not drive an automobile with your light-headedness! It might indicate something is going on about your blood pressure.

What time of day do you take your Letrozole? I understand that most patients are less bothered with their side effects if they take it in the evenings.

I have read that some patients' side effects subside in a couple of months, some of them in about six months.

There is another breast cancer website having a whole long discussion thread on Letrozole side effects experience, including some talk of perceived side effects differences with different brands.

I hope it works out well for you.

[Mclally in reply to Hidden]

Hello there. Can you tell me where you read another conversation about the side effects of letrozole please

[Hidden in reply to Mclally]

In the Hormonal Treatments section on breastcancer.org. Look for the longest thread on Letrozole. It might be titled Femara. Please be aware that most women do just fine on the medicine. There is also a discussion titled Doing Well on Aromatase Inhibitors (or AIs).

Please also be aware that there is a lot of fearmongering done in the Hormonal Treatments section of that other website -- some of the most active posters in there do not take and have never taken the medicine, and they apparently make a hobby (or career) of trying to scare others about it.

[lovesradio]

You have reminded me of how weird I felt when first on letrozole and the alendroic acid. My body seemed to gradually begin to tolerate the combination better. I found it was good to have some activity planned for my alendroic acid day (Friday) as I was better if I had something to focus on and do rather than sit about feeling weird! Also better if I ate little but often certainly at the beginning. Almost 5 years on it very rarely makes me feel odd but it can still happen occasionnally.