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Side effects gone after 3 days off Letrozole

4 REPLIES 4
Chick1
Member

Re: Side effects gone after 3 days off Letrozole

Hello again High2k, 

 

In the end,  the decision is obviously yours and you have to make the best decision for your quality of life.  

 

 If AIs were making my life intolerable, I would stop too after:

 

1. I had discussed it with appropriate medical staff - Oncology staff not surgical or GP

2. I had explored all the other  medical options to no avail, for example tried the 2 other AIs -Exermestane,  Anastrazole as well as maybe Tamoxifen. Tried a break and a restart.  Discussed reduced dosing. 

3. I was fully aware of how the decision may affect me based on my individual tumour characteristics  (receptor score, grade, stage,  node involvement,  prognostic benefit score of treatment etc) 

4. I am comfortable with my decision that the benefits of no AI treatment outweigh the risks of no AI treatment.

 

I am not implying that you should do the same but that I always like to make an informed choice.

 

By the way,  you say that:

 

"I noticed that in the US women can have their Oestrogen measured to allow them not to take AIs. Many of them using diet and DIM instead.  It just makes me wonder why we aren't given that as an option".

 

Not sure why you feel you need to be given the option.  Why not just make it happen as they do? You could always book yourself an appointment with a Naturopath/get your levels checked/buy some DIM, plan your diet and off you go.  Naturopaths or even the Internet is full of alternatives whether it is promoting "natural" aromatase inhibitors via high dose supplements or diet, or ways to  reduce oestrogen dominance and  promote progesterone balance and all other theories.  You may find some good research although it seems limited on actual human studies.  

 

Good luck and best wishes, 

Chick 🐣 X

 

 

 

 

 

High2k
Member

Re: Side effects gone after 3 days off Letrozole

Thank you both for your really informative replies. I only saw an oncologist at the start and end of chemo. Since then my appointments have been with my surgeon/consultant who is quite obviously time-poor. They suggested tamoxifen a while back but it feels like I'd be swapping one set of SE's for another, and with less protection. Maybe I need to take this to my GP?
I have discussed this dilemma with my family and we all agree that I should be doing what I can to make today better as none of us know what tomorrow will bring. I don't think I would have regrets if I was to stay off the pills and the cancer were to come back as I feel so damned good off them.
I noticed that in the US women can have their oestrogen monitored to allow them to not take the AI's. Many of them using diet and DIM instead. It just made me wonder why we don't seem to have that as an option.
I have tried other brands and had much worse SE's. Accord seems the best out of a bad bunch.
Maybe I should try going back on them and see what happens? See if I can be brave if the Se's are as bad.
My gut is telling me to quit and take my chances, and to be accepting of the consequences. But there's a teeny bit of me that's not too sure....
I may be back with an update if that would be of interest to anyone else with a similar dilemma.
Anniej
Community Champion

Re: Side effects gone after 3 days off Letrozole

Hi, I'm really sorry to hear that you are having such a grim time with Letrozole, and more than surprised that your consultant ( Onco?) appears so unsupportive. I have been on Letrozole for 14 months and it has got easier' I'm pleased to say. I do better on one particular brand, so my pharmacy always gets that for me. When I was struggling with joint pain my Onco gave me a few weeks rest, and then I started again. He is adamant that I have a good quality of life, and has been very firm with me when I have wanted to go against his medical advice, much to my hubbys relief! I am concerned that you feel you are not receiving good quality advice which supports and enhances your health. My team have always presented the facts, and answered my questions, and listened to my input. It is my choice, and any patients choice, as to what is put in my body. I take Letrozole and Palbociclib in the full knowledge of it's side effects. So far, so good! 🍀 However, if my quality of life was compromised then I would look at alternative meds before stopping treatment. But my Onco would be with me on this. I wonder if a change of oncologist might be helpful? Someone who has more time to listen, and is more supportive of your goals. You got a very full and helpful response re oestrogen from another member, so I don't think I can add to that. Whatever you choose to do, I wish you well. X

Chick1
Member

Re: Side effects gone after 3 days off Letrozole

Hello High2K,

 

So sorry to hear that you are having such discomfort whist taking Letrozole.  Really glad that you enjoyed your cycling and camping trip.  What a shame that you had to come off the tablets to do it and feel more like you again.

 

I cannot answer your specific questions - not enough medical and chemistry knowledge for that.  However, what would it really tell you if you had your oestrogen levels measured (every day, week, month??) What is deemed a "safe level"?   I really would not think that the NHS would conduct such tests.  If there was a "safe level", then imagine the scandal if this came out - and they had al of us poor women on either aromatase inhibitors or tamoxifen for all these years when we could have just tested ourselves every so often like a diabetic testing blood sugars.

 

Post menapause our oestrogen levels are pretty low compared to what they were.  Rather than the ovaries producing oestrogens, they are now mainly derived by the aromatase enzyme converting adrenal androgens (mainly androstendione and testosterone) to oestrogens (estrone and estradiol).  Letrozole will inhibit the aromatase enzyme and stop the conversion to oestrogens in body tissues and in any cancer tissue itself so reducing the chance of recurrence of oestrogen sensitive tumours through the body or new primary oestrogen sensitive tumours. 

 

Regarding whether high levels of  oestrogen go hand in hand with a high level of recurrence, well it would depend if the recurrence was oestrogen sensitive.  However, you were  prescribed letrozole, so I am assuming your tumour was oestrogen positive.  Taking tamoxifen or an aromatase inhibitor like letrozole will not totally protect against recurrence but it certainly can improve your odds.  That's the thing in my opinion, it's a bit of a lottery and in the end you have to weigh up the pros and cons for yourself and make your own decision about your quality of life.

 

My tumour was very oestrogen sensitive at ER8 - so I am giving the aromatase inhibitor I was prescribed a really good go.  I have been on it for over a year and at the moment I have just got some creaky joints but nothing major just yet.  I had more issues with excrutiating leg pains and cramps as well as locking thumbs and fingers in the early days.  This very rarely happens now and seemed to reduce when I took 2 calcium/magnesium supplements a day rather than one. Also, like you, I am on a bishphosphonate - I have an infusion every 6 months - hopefully this will help regenerate the lost bone mineral density as well as decrease risk for bone spread.

 

If you do not know already, then perhaps it would help you to find out if your tumour was strongly or weakly hormone sensitive (it should say this on your pathology report if you have a copy).  You say your Oncologist said it woud benefit you by 12%.  Perhaps ask them how they got to this figue. Was this from NHS Predict or some other prognostic index?  Is this 12% over so many years?  What does this 12% actually mean? 12% seems relatively high and could  indicate quite a potential benefit for  you.

 

My opinion is this.  The medical profession should be working with us in order to support us to maintain a decent quality of life whilst continuing to take potentially life saving medication.  When you say your "consultant" , do you mean Oncologist, as this is the person I would be asking and holding them down for a full discussion.  How insensitive and ignorant to just expect you to take painkillers - for how long?  No doubt you will end up with bleeding problems from the painkillers!!

 

I am surprised that since you are finding it so debilitating that they did not suggest a short break anyway.  I am also surprised that they did not suggest trying another type of aromatase inhibitor.  This has sometimes worked for people.  Where postmenopausal women cannot tolerate aromatase inhibitors or there is low risk of recurrence, then Tamoxifen can be prescribed (unless medical conditons dictate otherwise).  So before you throw in the towel, maybe give something else a try.  Tamoxifen works a bit differnently and some people (but not all) have found it kinder on the joints and bones).  Some women have even tried a tablet every 2 days or other ways of varying dosage.  Perhaps some is better than none!!

 

If you decide to go "au naturel" then there have been a number of Threads and posts on the forum from people who have done this so you could easily do a search.  You could always easily do an internet search and look up ways to reduce oestrogen for post menapausal women.  Healthy diet and a healthy weight no doubt will go some way whether we take the tablets of not.

 

Before you do give up, if that is what you decide, then ask yourself this - if you stopped and you got a recurrence in your body, would you beat yourself up about it and torture yourself with the "what if I had just continued?" etc.  I am not saying this to put you off or scare you.  It is more about me - this was one of my tests and I decided I would have to give it a good go because I would not be able to cope with the What Ifs!You have to be comfortable with the decision you make.

 

All the best to you,

 

Chick X

High2k
Member

Side effects gone after 3 days off Letrozole

I have been taking Letrozole for ten months now along with Ibandronic Acid. The SE's have been pretty grim. I am an active 52 year old and I have tried to maintain a high level of activity (cycling, running, swimming) despite the pain, as my body hurts whether I am active or lazy and I figure that being active has to be better. However, I have been feeling like a 90 year old these last months. I had to roll out of bed in the morning and the pain in my back, hip and legs was ever-present.

My consultant was adamant that I stay on them because they are giving me a 12% benefit (which didn't sound like much to me). I had a big cycling holiday planned and told him that I wanted to try coming off them for my trip as I would be camping and didn't want to be incapacitated with pain. He advised against this and recommended that I chow-down on some painkillers for my trip instead.

I decided the week before my trip that I would stop taking Letrozole and Ibandronic Acid and within 3 days I felt amazing! I still have some issues but they seem to be natural age and menopausal symptoms. I had a wonderful three week cycling holiday and managed to camp and crawl in and out of the tent no bother.

I now have the dilemma of whether or not to go back on them....

I really don't want to go back to feeling that way again and I don't feel that any health professional is going to give me a neutral answer to my question as they seem to employ and one size fits all policy with these drugs.

I guess my questions are:-

1. Would it be possible to have my estrogen levels monitored, because maybe they're OK and I don't need to be on these drugs? Is this feasible, and if so, is this something I can ask of the NHS?

2. Does the fact that I felt better so quickly mean that my body has had a surge of estrogen, and if so, is that bad?

3. And does high levels of estrogen go hand-in-hand with a high risk of recurrence?

 

My consultant is great, but whenever I see him it is so obvious that he is short of time and not able to enter into the in-depth discussion that I feel I need on this matter.

 

I'd be so grateful to hear from anyone who can offer some advice, and anyone who has found a natural way of controling estrogen levels.

Many thanks,