Aromatase Inhibitors

WhiteLight

Thank you @FLClover,

It's good to know other people have similar symptoms, so maybe not early dementia. Has your brain fog cleared now you are off them? I hope so. I already wear knee supports and wrist supports for doing my knitting but they get in the way much of the day (when cleaning, baking, etc). I have now added ankle supports.

I think I will ask my oncologist if I can try another AI but as you say they all have different side effects, but maybe others may be more bearable than on Letrozole. My GP has said giving up was not and option but my oncologist seemed to be of the opinion that as it was so small (to me it was still Cancer, no matter how small !) I could do without AIs as the risk of recurence was so small. I was quite surprised when he said that. I don't want any recurrence !

WhiteLight

Thank you @iserbrown,

I admire you being able to put up with side effects for 10yrs, that's amazing. I have been told I need to be on them for 5yrs by my GP but my oncologist seems to not be as concerned! I am willing to keep going on Letrozole if I knew the side effects would settle down, or try another one. 

I am not able to take Tamoxifen as I have Factor V Leiden blood (aka. sticky blood prone to clots) and have had many uterine polyps removed. It's a shame as I know a friend who has done okay on that with no side effects at all, I was hoping I'd be able to try it to but my surgeon warned me it was not an option.

I will persevere and hope changing around the AIs or having a break for a few weeks will help 

arpie

@WhiteLight - I have a letter from my Onc saying that I am on the Medicinal Cannabis Oil for side effects from Breast Cancer treatment ..... I carry it with me every time I am in the car.   I haven't been tested yet. ...   I take a number of drops under my tongue about 30 mins before I go to bed ... I've never ever felt 'compromised' the next day ....   It is the THC component that shows on a roadside test ... not all Medicinal Cannabis oil HAS THC in it ... so could be worth a try?

take care  

WhiteLight

So that's how it works. You only take oil not actually smoke it.

Yes it does sound worth a try but maybe as my cancer was so small he might not consider it worth prescribing. He already told me if I had too many side effects, it was such a low risk of it returning I needn't take any AIs. But that's my fear that it will return somewhere else in my body, so I have to give at least 5yrs a go.

Thank you @arpie

arpie

Yes, @WhiteLight - you take the oil orally.  There is currently a HUGE movement trying to get Medicinal Cannabis Oil made legal and on PBS as it is a 'natural herb' - as the alternative are opioids and other strong drugs that are highly addictive & people can die from overdoses.  

Depending on the strength of the oil that is prescribed for you - you may need fewer drops, too!!  Everyone is different - and when starting on the oil, you 'work up' gradually, from a couple of drops an hour to the number of drops needed to reduce your symptoms.  That is then 'your dose'.  It is called 'titration'.   

AI side effects aren't relevant to the size of the cancer eith .... they can hit anybody, hard!    Luckily, some get NO side effects! 

My cancer was only small too - and like you, I chose to do the 5 years for AIs .... then, in discussion with my Onc, I've increased it to 7 years - so I finish up on AIs this time next year.   

Check out this thread for lots of info on Medicinal Cannabis Oil - the movie, in particular ....
https://onlinenetwork.bcna.org.au/discussion/19569/medicinal-cannabis-oil-amp-reduction-of-pain-improvement-in-well-being/p1

take care

WhiteLight

Hi @arpie

Thank you so much for the information and link on medical cannabis. I will definitely look into it as abetter option than the opioids I am currently on.

FLClover

Hello @WhiteLight, 

Yes, those splints and supports do get in the way. That’s probably why I was told to wear them at night, but I did try to wear them during the day too, just not as successfully for obvious reasons. 

I do feel that the brain fog is lifting. Slowly, but surely. Overall, I feel fantastic compared to what I felt like on these AIs. I am taking natural supplements and doing other things to avoid a recurrence. I want to also get myself on cannabis oil, as that’s supposed to kill cancer cells amongst other things. 

I do understand why you want to stay on them for 5 years. They feel like a security. It’s the reason I went on them too. But they’re not as helpful as I initially thought. My onco told me they only benefit me by 4%, so they’re not really ‘life savers’ and sadly, lots of women have had recurrences even after being on them for years. This helped me make my decision. 

I want to be really honest and say I don’t agree that your GP has the right to say that. GPs are not specialised in this field, and shouldn’t be giving out that kind of advice, in my opinion only. And there’s always other options. So, I’d rather listen to your oncologist than your GP. These pills really can cause damage and sneakily too. 

However, if you choose to stay on them, definitely ask to try another AI. It can make a difference in your symptoms for the better, and it doesn’t cost you anything really. 

Good luck with it all, these are such tough decisions to make 🤍.