I thought I was tough until I went through Chemo and tried the Letrozole. My friend going through it also having a hard time with the inhibitor. She wants to quit but doesn’t dare, due to having breast and then ovarian. I wish I had seen the forum about trying magnesium. I do not test low, but you know how their normal in testing might not be our normal individually. Found that out when I knew I was dehydrated and I was told my readings were NORMAL. I had to persist until dr ordered the fluids. What a difference. We know our own bodies. Best to you.
Hi,
I have just been reading this thread as I too am on Letrozole ( have been for about 9 months now ) and have all the usual side effects, stiff joints, depression, head aches etc but they are not too bad I can live with them but a few months ago I had terrible “gastric” problems and I decided to go back to basics and take them as it says on the packet, i.e. with a large glass of water, I also have a large cup of tea and some plain biscuits after taking them and have a large meal before I take them, I make sure the meal I have before them is very starchy/high in carbs, usually lots of boiled potatoes, with just a very small amount of veg and it seems to have stopped the “gastric” problems, I used to eat a lot of veg but it just does not seem to agree with Letrozole so I may end up putting on a bit of weight but if it makes me comfortable for the next five years its a small price to pay.
Any of you that are having gastric problemst may find it worth trying this kind of change in diet before you give up taking them all together and I also think drinking plenty of liquids around the time I take them helps.
Good luck.
Hugs
Sunflower
Hi,
Fat cells do indeed produce estrogen but that is what your Letrozole is there for to stop them doing that so you dont have to worry about weight its just about getting through all the side effects of the letrozole.
Sunflower
Ditto. So much negativity. I felt positive and thankful that there is/are things to help (eg. Radiotherapy, Letrazole) me go forward after my world turned upside down in March 2023, following a routine mammogram. Im waiting for a date to start 5 sessions of radiotherapy (saw Oncologist last week and just started Letrozole - after wide incision op 7 weeks ago). But now I’ve read forum posts on both radiotherapy and Letrozole I feel sick with worry again. So much negativity and so much negativity. Feel like I’m going into a dark place again and worried. NHS strikes, no idea when radiotherapy will start (I’m fed up with hearing ’staff shortages in NHS and long waiting lists’. I was feeling positive but not now. Worried about side effects, what’s to come and when that might be. I don’t know what to ask or who to contact tet things moving. Feel if I don’t try and move things on it will be forever until I hear anything… frustrating but also worrying and scarey.
Its all scary to be honest, which probably comes over as negative, as we are all flying blind a lot of the time. I was terrified of the radiotherapy, but it was explained to me that radiotherapy is so much more advanced now, and is used with pinpoint precision to the exact area, not the whole breast, so less likely to have any long term side effects. I was also told its like a mopping up of any stray cancer cells, to stop them moving elsewhere in the body, so it seemed a good idea in prevention of a return somewhere else.
I was very concerned about taking the Letrozole, after reading of some of the side effects. I decided to start and see for myself, as some people have very little to no side effects. I didn’t have any for the first year, and have some now, but they are manageable if you eat healthily and take a few supplements for joints and calcium etc. The surgeon told me any time on letrozole will benefit you in stopping a possible return in the first 5yrs, so just see how it goes! I was more worried about not taking it to be honest, and the cancer returning.
We all have the same fears, and all have to make our own decisions on what to do, when we dont really know what side effects we will get.
Yes, the situation with waiting for radiotherapy is a concern at the moment. I had mine in early lock down, before it got delayed for some.
Not sure how you can hurry it along, as everyone waiting is in the same position regarding delays.
You can contact your breast care nurse with your concerns, who may be able to reassure you at least. I had to wait 4mths after surgery to get my radiotherapy started, so i understand your worry.
@Bluebell22 I agree with @dawn2412. It can be terrifying reading posts in these forums - when I was first directed here after my diagnosis, it scared me so much I didn’t come back to it for over a year!! People who come on these forums are largely a self-selecting group, ie you wouldn’t need to post if everything was tickety boo, so there’s a negative bias from the start. I had WLE in Nov 2021, followed by 5 days of RT in March 22. I think I started the letrozole after the surgery, so I’m c 18 months into it. The RT wasn’t too bad, I was running meetings for work part way through. I was a bit tired for a week or so after, but that was it, and as Dawn says, it’s very targeted to minimise how much they give you, and the radiologists were lovely.
I’ve always thought of myself as having “breast-cancer-lite”, as others have a much tougher journey than I did, and frankly it’s been a lot easier than the hip replacement I’d had 6 months before the cancer diagnosis, which they’re still working on, but at least my hip wasn’t trying to kill me.
The letrozole has been harder than I expected (but certainly a LOT better than Tamoxifen from what I’ve heard), but most of the time I just get on with life and work around the joint stiffness and random tendons firing off. The low mood could be attributable to many causes in my case, I suffer from mild depression anyway, and life has thrown a whole raft of other nasty challenges at me recently, so it’s hard to pin it down just to these pills, although I doubt that they help. But however decrepit my body feels, I don’t think there’s any way round it and I would far rather be on these than play Russian roulette with the cancer returning.
**The way I viewed my cancer journey was “ok, they’ve found a nasty lump, they’ve cut it out and chucked in the bin, and gave it a kick up the bum with radio therapy, and these pills are my little soldiers to make sure it doesn’t even think about coming back”. Then I just got on with life again. I work in construction and was back up the scaffold 2 weeks after surgery. I have times when the side effects of the letrozole get me down (I won’t lie, sometimes to the point of flattening me), but I do my best to ignore it and just crack on. A trick I **learnt from my horrific arthritis journey was to lose myself in something I enjoy when things get bad. It doesn’t make the discomfort etc go away, but it does push it to the back of your consciousness and gives you a dopamine hit, which does no end of good.
We all have a tendency to fear the worst, but you may be one of those that can cope pretty well with letrozole, (I was blissfully oblivious to all the side effects, even when they were in full flow - I just thought the near robotic stiffness was due to lack of exercise!), and give it a go with an open mind. For me the worst of the side effects were over in the first few months, which was about when I found out it was the pills that made me stiff. I’m glad, in retrospect, that I hadn’t realised it was the pills, or I may have been tempted to stop them, but having got through the worst bit, most of the time I feel fairly “normal” and would rather have this discomfort than cancer any day.
I also had well you could say easier BC than many of you.
And scary enough for me hats off to you ladies going through hell.
I had lump removed clear nodes radiation 15 rounds did well even though petrified going in same starting letrazole side effects scary but im doing well but then you never know what’s going on internally.
What side effects did you get after a year?
Bluebell, I’m going to echo what some other people have told you. Yes, letrozole is scary because the people talking about it on-line have trouble with it and come here to find others to talk about it with. And good thing, too! Glad they have sites like this for that. But most of us do fine with letrozole. We are doing so fine in fact we don’t feel a need to talk about it. Letrozole is a non event. My side effects are mainly stiffness and I’ll notice a little pain sometimes after a workout. But when I say a little, I mean a little. No pain medication needed and I sleep fine. And once I’m up and moving the stiffness subsides. It just hasn’t been that big of a deal and I consider everything I feel to just be normal menopausal symptoms. So yeah you can be nervous but don’t let it overwhelm you. Chances are great you’ll be just like the rest of us and just move on with no real issues.
Hi Bluebell,
I concur with what the other ladies have said re-yes, it’s scary reading about other people’s experiences, and yes, to some extent, I do agree that many of the posts are from women who have had a tough time (though I don’t agree with this entirely because when I was diagnosed in 2018 I came on here and learned a heck of a lot from *all* of the posts-in fact they helped me put together my own list of Q’s for my surgeon, oncologist, etc). But what you have to remember is that we are all different. Our pre-cancer health differs, our tolerance for different types of pain and symptoms differ, so whilst we can learn from one another, we must not let another person’s experience lead us to think “that will happen to me”. I met some lovely ladies in my early days of diagnosis-some of whom *stopped* taking Letrozole because they just couldn’t tolerate the symptoms. Of course that caused me some concern, but I didn’t let it stop me from starting Letrozole with as open a mind as possible. Also, keep in mind that when others stop Letrozole, it says more about their own tolerance for symptoms and their own mindset, than about the drug. If 1,000 women/men take Letrozole, there will be 1,000 different variations of how we feel on it. I hope I am making sense. Just because 500 struggle (as an example), doesn’t mean you will. Like one of the others has said-possibly Kay (I can’t see whom while I compose this reply)…she is still able to get on with her daily life/routine, she still exercises, yes, she may feel stiff at times (as do I when I get out of bed and if I sit for too long), but nothing that somebody else with osteoporosis doesn’t experience. Letrozole *is* known to weaken bones, which is why we need Dexa bone scans every other year-but this is manageable. I’ve even had a couple of falls since starting Letrozole (I’m accident prone-not because of the drug)! & yet I did not break any bones-even though they say that Letrozole increases the risk of fractures. And so please don’t be scared-the power of Letrozole (to keep cancer away and shrink it) far outweighs the negative-in MY view. Of course, for others, their view will differ. But given you are going to be starting the drug and need some reassurance, I am here to tell you that the positives outweigh the negatives for many, many of us.
And like one of the others has said, I, too, worked throughout my 20 days of radiotherapy. I had my videocalls in the mornings (it was during lockdown) and then drove myself 45 mins. to and from each way) my radiotherapy sessions. It was fine. I was tired by the end, but that was from the combination of the radiotherapy, the driving, and the stress of it all. We have to remember that a cancer diagnosis and treatment is very stressful, and stress causes it’s own symptoms:).
And just to add, it sounds like the uncertainty of when your treatment will start, given the upcoming strikes, etc. is adding to your anxiety, and understandably so. I started my radiotherapy during the beginning of COVID (end of April 2020)-it was meant to start two weeks prior but hospitals were not taking on cancer patients at that time. All this to say-your treatment will get rolling and you’ll feel like you’re moving forward. For now, try not to worry yourself sick-I know-easier said than done. xxx
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- To everyone who has replied to my post - Thank you so much for taking time to respond. Has helped me feel more positive about taking Letrazole. You’re right - everyone is different and will be different for everyone. I must try and think and focus on the benefits and positives. Still the unknown to come and scarey. I dont want to go back to the dark place I was in at the beginning of this BC journey, which no one wants/ed to go on and hopefully now the Radiotherapy, drugs, a healthier lifestyle etc and support of others (including BCN Forum) helps me get through the twists and turns of this labyrinth and find my way again. Xxx
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After a year, I started to get pains in my left foot that made it very painful to walk, then my right foot. I have peripheral neuropathy in my hands and feet now, which can be very painful, and is due to nerve damage. I had a break from the letrozole when it was bad, but it didn’t make a lot of difference, and when i started taking it again, I felt awful for a few weeks, and wished i hadn’t stopped. Just have to put up with the side effects, or stop taking it. Its manageable, so decided to carry on with it. Only 2 yrs to go!!
So sorry to hear you have been having side effects, and hope things improve soon. All drugs unfortunately have side effects so it is finding the one that works best for you and having a sympathetic oncology team/GP who can then prescribe it. Personally, I have been on Letrozole for two years now and have recently had issues with Pharmacists running out of stock, so get what I am given and notice different versions cause different side effects, but in my case none that is causing too much trouble. I am now tracking my side effects and what version I was on so I can go back to GP to have an informed discussion. Hope your situation gets better soon.
the anxiety could just be related to your diagnosis and the underlying anxiety we all have re: recurrence etc. I was quite upbeat and optimistic in the spring and then plunged into anxiety and depression and am aware that I’m feeling anxious about all sorts of things - daft things. We must all be kind to ourselves and rest as necessary as much as we can. I’m awaiting counselling and maybe this might help you to keep the anxiety under control? All the best.
I gave up on Letrozole Friday.
I can’t exercise without becoming so dizzy 1 breath away from passing out with BP of 97/47.
Letrozole Aromatase Inhibitor 2.4 mg By Prescriber - Dr. —, — Oncology — , TN (began 2/20/2024 to ended 4/5/2024)
- Hot flushes and sweating
- Feeling very tired / exhaustion
- Loss of sleep / night sweating / awakening to urinate
4, Losing appetite - Hair loss
- Low mood
- Muscle weakness, pain or swelling in the joints or tendons in your or legs, shoulders, and chest
- Chills / Sweats alternating
- Unstable angina, pain, wildly fluctuating blood pressure over 200/100 to below 87/47 each day M, W, F.
- Sunday even without exercise BP spiked to 198/102 at 9:38 AM with cardio meds including Clonidine add on went to 88/62 standing BP at 10:42 AM.
As a result, unfortunately too ill to attend Church Service.
Hoping to be able to complete Physical Therapy for a full session of 1 hour next Monday 8, Wednesday 10, Friday 12.
April Monday 1, Wednesday 3, and Friday 5 only got in 45 min. of exercise until BP diastolic dipped below 50 and was too dizzy to continue.
UPDATE:
Was able to complete Physical Therapy Monday.
Took mononitrate after exercise.
Took regular heart medication approximately 2 hours beforehand.
Relieved this is over.
I will not look back.
Looking forward in prayer that cancer remains gone.
I will know the last week in July when I get another 3D mammogram, sonogram, and MRI if the cancer remains gone.
Hoping the neuropathy in legs goes away caused by Letrozole and the lipids start going down.
Upshot:
Slept somewhat better last night.
Should get my dopamine booster pills soon.
Letrozole kills dopamine levels.
Hope mine level does come back.
Without dopamine we head for Parkinson’s and dementia.
Pray for me ladies as I will pray for you also for complete healing.
~ Mabellean
Surgery 1/26/2024
DX 1/2024, Right, Intrusive Carcinoma, Stage IA, Grade 2, ER+, PR+, HER2+, ISH
Letrozole Aromatase Inhibitor 2.4 mg,
*(began 2/20/2024 *
DISCONTINUED 4/5/2024 - Serious, life threatening cardiac reactive)
Hi - I’ve been on Letrozole (Accord brand whole time) but have come off twice and back on. I’m 46….
M6 two main issues were:
-
Daily hot flushes & night sweats increasing all the time. It stopped coming off it within 2-3 days,To support me to keep taking I now take Oxybutynin twice a day and significantly helps, as recommended by my cancer nurse.
-
Joint stiffness in my feet/ankles/toes and wrists/hands/fingers……it starts early evening and over night and feel like concrete in the morning……
Any ideas?
I started approx 8 weeks ago taking a collagen sachet (absolute collagen), take a product like menopace for menopause….
I’ve just ordered magnesium tablets as per other comments on here….
I take my tablet in AM - not sure if help to take at night….
I start my 6-monthly Zoledronic acid drip next week - so not sure if this will help ?
Hi vixsterr11, I got diagnosed last year at age 46 & have been on monthly zolodex and letrozol since April last year. The medicine SEs have been so bad that I was on the edge to stop this horrendous treatment as my quality of life was very poor! Extreme night sweats and hot flushes and very disturbed sleep, joint stiffness, low mood & insomnia. I have cleaned up my diet significantly & exercise very regularly but 8KG plus in weight in 8 months.
I started Ozempic back in Feb to get rid of my weight & not only I have started losing weight but all my SE are almost gone! Life seems again normal and I feel really healthy and active & good energy & I don’t know if there is a link but this seems like a miracle drug for SEs of hormone therapy…
Been taking letrozole, adcal and abemaciclib 150mg (twice daily) now also on an extra bone protector ibandronic acid.
Only se are stomach cramps then sudden diarrhoea usually late morning.
Think I must be one of the lucky ones!
Worst thing though was being prescribed ibandronic acid without any prior explanation from onc as not scheduled to meet onc that month. Opened packet of repeat meds and saw it then read it was for metastatic breast cancer, spread to bones, had massive meltdown and believed the worst which showed best not to jump to conclusions.
Ive just been to the docs because my hot flushes have really started to impact my life. Im going to try gabapentin but ive just seen a note on the box to say it may cause drowsiness. Has anyone here tried gabapentin and if so have you found it best to take at a particular time of day?
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Just today switching from Letrozole (on it 1 1/2 months and side effects daunting).
Convinced ONC to switch me to Tamoxifen.
I HOPE it has less side effects.
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Hi KChest
I took Gabapentin, actually prescribed for sciatica but they almost wiped out the hot flashes I was getting due to Letrozole.
I did have fatigue on them, but was advised to keep increasing dose to try to cover my sciatic pain- up to 12 a day!
At the lower dose the fatigue wasn’t too bad at all. I think you should have been advised to slowly increase the dose, by 1 every 3 days?
I took them at night & they helped with sleep too.
Best thing I’d say is try them & see how you go. Good luck
Laura x