AFIB AND LETROZOLE UPDATE

[SilverliningsForNow]

Will make it quick 🤣 Spoke to my Oncologist, a Professor at Guy’s, who although they think its bizarre fully concurs that Letrozole has caused/affected my AF and is writing a letter to that effect to my cardiologist and doctor. Hope this helps any other breast cancer sufferers with similar symptoms.

[Kevinder23]

I really hope ghey can get a solution for you fingers crossed godwilling xx

[SilverliningsForNow in reply to Kevinder23]

That is so kind of you. To be honest now I am off the Letrozole again everything is much more normal and settled right down. I was told yesterday if I don’t take any cancer medication there is 5% chance of it coming back - I might take that chance - we’ll see. Lovely chatting to you.

[Auriculaire in reply to SilverliningsForNow]

If you do take that chance then you could help yourself by making sure you have a good level of vitamin D- at least 100nmol/l. The Russians had data 40+ years ago that women who sunbathed topless had lower rates of breast cancer than those who did not. This is probably because exposing the torso is the most efficient way of making vit D from the sun. There have since been studies that show that women with higher levels of vit D have less reoccurrence of breast cancer. Iodine intake is also important so one should eat foods high in iodine .

[SilverliningsForNow in reply to Auriculaire]

Thank you so much for taking the trouble to write that to help me. I will take that advice on board.

[Linkj]

Thank you, my breast surgeon says my chemo, zometa and I think exemastane may have caused AF but my cardiologist says it is my age!! I have so many continued effects from chemo, irritable gut, painful joints etc that I would not be at all surprised if they cause/ exacerbate AF.

[SilverliningsForNow]

Yes my cardiologist said its because you’re over 60 and overweight so maybe we will never get acceptance - at least if we know we can take action. Thank you for your reply.

[cassie46]

I had AF and HF before I was diagnosed with breast cancer. Taking Letrozole (was also on Anatrozole for last two years) for five years has made no difference to my AF certainly has not made it worse. As joint pain is one of the side effects of Letrozole I had hoped that when I finished the five year course last year I would see a difference - but sadly that has not been the case. I know of many women who have had breast cancer, various groups I belong to and I do not know of anyone who has developed AF while taking Letrozole. I am not saying that it does not cause AF in some cases but I do not think it is that common.

[SilverliningsForNow in reply to cassie46]

Thanks Cassie. I think that’s exactly it. Some people are more susceptible than others. I have a lot of data because I have documented every attack and the times when I have been on and off Letrozole and the link cannot be coincidental. I was one whole month post ablation without even the slightest palpitation and two days after taking Letrozole again the flutters and palpitations are so bad that I go into AF again. There is empirical evidence available showing a link. At least for me I know when I am not on it my heart settles. I am sorry to hear about your joint pain. I honestly think more data should be available. For me, QOL outweighs longevity.

[ange1960]

I've had AF for some years. Had ablations without success so a CRT-D pacemaker was implanted in 2018 and then bisoprolol prescribed. The plan was always for an AV node ablation when needed. That got rushed through last year when I was on Steroids (Prednisolone) which caused uncontrolled AF. It was dreadful. So AV Node ablation was done and I thought I wouldn't feel or be aware of any further AF. I got quite ill in October with Gastritis, lost 50lbs in weight and had long episodes of AF which showed up on downloads with my home heart monitor. They eased as the intensity of the gastritis slowed up. Still not right, but not as bad.

I've just been diagnosed with Breast Cancer, bi lateral. Left breast is Invasive Lobular Cancer, and right is Invasive Papillary Cancer. Original plan was Surgery, chemo or radiotherapy then hormones. But they are concerned there may be cancer in Lymph nodes so I have already started on LETROZOLE. I didn't want to. I read the leaflet and worried about a lot of the side effects, particularly the heart ones. I've only taken it for 4 days and have already had episodes of AF again. Feel stuck between a rock and a hard place. I need to take the Letrozole to turn off the supply of hormones to the cancer and give myself the best chance, but in doing so I know I could shorten my life because of the cardiac issues it can raise. It's a horrible choice. I do believe for some people it really can affect the heart function and arrhythmia's.

Hopefully you can find a type that you can take without it affecting your heart and it sounds like your oncologist is at least listening to what you are telling him. My EP told me he felt it likely that it would cause some affect. Nothing I couldn't cope with was how he put it, but just to not be surprised if my heart kicked off. I have proved very sensitive to medications. The steroids were awful and I know I am likely to have to take them again at some point during this cancer journey, Having breast cancer is bad enough, but how it, and the treatments affect all our existing health conditions is hard.

[SilverliningsForNow in reply to ange1960]

Hi Ange pretty much the same cancer as mine. They swapped my Letrozole for Tamoxifen and it has been fine. Any chance they could do that for you?

[ange1960 in reply to SilverliningsForNow]

How long have you been on Letrozole? I'm only on day 3-4, so feel I have to give it a decent go first? I did read somewhere that Tamoxifen was aimed at pre menopausal woman, and I'm post? not sure if that's true or not. But I am glad there are other alternatives to try if things do go haywire on this one.

[janeblakelock]

I had never had AF until I was on Letrozole for about 8-9 months. Episodes were occasional, but often several times a week for 15 min to several hours. My blood pressure was erratic, also new. Both my oncologist and cardiologist denied it could be the Letrozole. Fast forward—my 5-year course ended June ‘23.

My last episode of AF was in October. I think the Letrozole caused paroxysmal AF and perhaps I’m OK now. (I had not gone more than a couple weeks w/o incident for 3 and 1/2 years, until after finishing the med, and now it’s been 4 months.)

I am glad I resisted medications and ablations and other treatments advised that now seem quite unnecessary. I do not suggest my experience is typical, just that it may certainly be true for some.