Hi Everyone, Long story but I'm still here five years after initial diagnosis of OC, two bouts of chemo, two operations and two sessions of radiotherapy- I dont do things by half! Now about to start Letrozole (Femara) and upon reading the blurb with all the side effects that come with taking this drug, I wondered how other ladies have fared?
Also I take herbal tablets, namely turmeric, ginkgo biloba, and some bitter apricot kernels. ( Ive no idea if they help or not but I feel better through taking them). Do I need to double check if I can carry on? or is this a question for the consultant- will they know?
Anyway onwards and upwards...
XX
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Jersey-girl
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Been on it for 4weeks now first reaccurance after 3 mouths with first line carbo taxol been ok so far few hot flushes but nothing bad felt but sick at start of treatment but ok now my estrogen levels were 200 that's why we trying this before next chemo xxx
lerozole is NOT hormone replacement drug. it's rather opposite - it stops your body produce estrogen.
I'm not an expert but this is what I know.
there are 3 types of estrogen (you can read all about it on internet) and after hysterectomy (assume you've had it) the levels of estrogen drop by about 50%. letrozole and similar ER inhibitors block the rest. this may help if you are 1) pre menopausal age and 2) your tumour was ER sensitive.
my gyno said that they can only test estrogen that produced by ovaries so in most of our cases any tests will be literally meaningless. he did say we can do it but it wont mean anything. especially because nobody checked your levels pre-op I bet, so nobody can see how much they dropped. honestly this is first time I hear anyone mentioned levels of their ER but again, we all different and I'm not an expert
the other type of ER is produced by fat cells so if your body is ER dependant, you can put a lot of weight on.
after chemo finished I was on Letrozole for short 4-5 months and it was a total disaster. I was putting a kilo a month and was falling apart - joints pain was unbearable. 2 hrs shopping would whipe me out for days. I felt worse than I did during chemo. I am also on Avastin maintenance so side effects can be worsened by it.
then I was moved to Tamoxifen on which I put on 1kg a week LOL actually it's not funny at all because in 1 year since diagnosis I put on 30kg which is 1/3 of my weight.
my onc took me off all the drugs except Avastin by end of April and only now (!!) I managed to shift weight by 800g (about 2 pounds)
I'm 'only' 37 and obviously my body has different plans and demands estrogen it was deprived by cancer and surgery... and believe me no diet helped, no amount of exercise helped although it was almost a torture to work out. after my work and home and my 6yo daughter I have literally no time and energy to do anything else.
I'm not on 800 calories for 2 days, 1200 calories for 3 days and on weekend I can allow myself enjoy life a bit more. at least it has an effect because on Letrozole and Tamoxifen it was impossible...
as for the other remedies you are taking, none of them are proved to do anything really, or, in case of turmeric, it's impossible to deliver large enough doze into blood stream to fight cancer, but I don't think any of them should interfere with ER blocks
SmileNwave is right its not HRT that is something different. They can test tissues samples from your surgery to see if your cancer cells have oestrogen receptors.
I tried letrozole for a little while I felt sick during the first couple of weeks but that soon settled and I used to get hot flushes. However it wasn't an effective treatment for me and I ended up on weekly taxol.
Hi , I don't know - it's a serous tumour that's all I know , But they did test original tumour which is how they know it's oestrogen fed. Thanks for all replies , very helpful 😊
I'm also BRCA 2 and my white cells have remained very low even though finished chemo 2 years ago - can't have chemo or parp inhibitors so limited options 😐
Hi, I didn't have any side effects from the Letrozole, but it didn't work for me either. I would let the oncologist or hospital pharmacist know what herbs you are taking because some can interact with the action of the prescribed drugs.
I didn't have letrozole for my ovarian cancer but did take it for several months for breast cancer. I didn't suffer much in terms of side effects but on the other hand it didn't work as well as had been expected as far as reducing the tumour was concerned, though fortunately, a lumpectomy and radiotherapy seem to have done the job. As SmileNwave says, it is used to stop the production of oestrogen and I'm now on Exemestane for that purpose.
It is wise to speak to your consultant regarding any herbal remedies and as for Apricot kernels, steer well clear, they are poisonous.
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