Letrozole: Evening everyone, hope you are all... - My Ovacome

My Ovacome

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Letrozole

Samjane profile image

Evening everyone, hope you are all coping in this awful scary time.

Just a quick question, after 12 rounds of chemo and a fluctuating CA124 between 30-49, and due to my white cells not behaving, my oncologist has decided it’s not worth the risk of more chemo with COVID-19 being around while I’m struggling with cells. Only had 6 more to go. Anyway he’s put me on 2 months of Letrozole to see how I go. Anyone else had experience of this drug?

Much love to all

Sam xx

18 Replies

Hi Sam, So sorry to hear you're having to put chemo on the back burner due to low white blood cells. The same happened to me. You need to be very careful that you don't pick up an infection- I did and ended up in hospital with sepsis. I don't mean to frighten you but just be careful and ring your dr if you have any issues. As far as letrozole is concerned, I was on it for bet. 15/18 months before it stopped working. My cells are oestrogen positive/progesterone negative. The only real side affect I had was arthralgia - a cross between arthritis and neuralgia and which only seemed to affect the top quadrant of my body - weird, but it did get me down a little - but I managed without pain relief so couldn't have been that bad! Let us know how you go on with it. Gwen X

Samjane profile image
Samjane in reply to thomas62

Hi Gwen,

Thanks for replying. He said I won’t be having anymore chemo as I’ve done a good chunk of it already. I will be careful,

I was in hospital 6 weeks ago with pneumonia for 8 days. I heard mixed reviews about side effects, but there has been some positive results and good remission times. I must admit I was ready to give up earlier, just feel like I can’t do anymore. But I’ve taken my first tablet before bed so we will see how it goes.

Sam xx

thomas62 profile image
thomas62 in reply to Samjane

Hi again Sam,

We're all individual and meds can affect us in different ways. However, over quite a long time that I've been on this site, i.e. 5 years plus, I've heard of more positives with Letrozole that negatives and yes you may have side effects and perhaps some more challenging than others but, on the other hand, you might sail through it. Good luck and best wishes. Gwen x

I’ve been taking Letrozole for nearly 2 years. I do have a few joint pains sometimes, though I also have some arthritis, so I don’t know how much it is due to the Letrozole, & I don’t find it too bad, just take occasional Paracetamol. Also get tired, but overall I find the regime quite easy, much easier than chemo of course. I know they are expecting to eventually need to put me back on chemo, but I,m putting it off for as long as possible, Di

I've been taking letrazole as a maintenance treatment for three months. My onc told me any side effects might take six months to fully manifest. So far it's been fine - I'd say I have a bit more joint pain added to my existing osteoarthritis. There can be "menopausal" type effects like hot flashes, mood swings and the like because the way it works is to suppress your remaining estrogen production. I haven't had those but have had vaginal dryness which is manageable with OTC lube. I have not yet had a scan to see whether or not it is effective for me - that will happen in June. Basically the plan is for me to take it as long as it is giving me a benefit AND the side effects, if any, are tolerable. Hope this info is helpful! Deb in Colorado

I took Letrozole for many months before it finally stopped working. The side effects I had were insomnia and hot flushes. Both were quite manageable. I hope you do well on it and wish you well! Love Julia

I started taking it on Saturday, so we're in it together. I'm at the end of the road as far as chemo goes so it's worth a try. Xx

Samjane profile image
Samjane in reply to LittleSan

Hi, just wondered how you were getting on with Letrozole? Xx

LittleSan profile image
LittleSan in reply to Samjane

I'm not getting any side effects other than hot flushes but it doesn't look like it's working because my ascites have returned. 😔

How are you doing? Xx

Samjane profile image
Samjane in reply to LittleSan

Not too bad to start, hot flushes and insomnia was main and mild constipation. Last few weeks, aches and pains, just updated about it all. I’m worried incase it’s growing again cause back ache, tummy pain on and off and indigestion. Although these can all be side effects so I’ve no idea.

Aw no that’s crap ascites is back 😥through my reoccurrences it never came back from first time 6 years ago.

Keep in touch let me know how your doing g xx

LittleSan profile image
LittleSan in reply to Samjane

Will do. Hope your niggles are just that. Xx

That’s very interesting Samjane

I was on Nirapabib for 2 weeks and taken off it because of low blood blood platelets and had a blood transfusion. Bloods today practically back to normal but advised not to go back on Nirapabib even at a lower dose because of risk of having to go into hospital again. He’s ringing me in a week to see what I’ve decided to do. I didn’t know Letrozole could be an alternative. I’ll be interested to know how you go on. Can’t help you with your question though but I’ll google Letrozole

Love to you and good luck

Angela xx

This post is so relevant to me at the moment, Niraparib stopped working and had bad side effects,Consultant said because of Covid would not consider chemotherapy therefore to start on Letrozole 2.5mgs tomorrow.Just read possible side effects somewhat scary.

Also wondered with me coming of parp inhibitor am I still in high risk group,our can I go out.

HOPE you are all keeping your spirits up, getting the treatment you need and deserve

Sorry, I've only just seen this post. I have been on Letrozole since January of last year. So far, so good, it seems to be able to keep the cancer at bay. I had a few side effects at the start, headaches, hot flushes and night sweats, these slowed down after about 6 weeks. Still have the occasional hot flush, but bearable. So glad my oncologist put me on these tablets. Take them at night to sleep through worse side effects. Best wishes.

Update on Letrozole... first few weeks were ok, some insomnia, few aches here and there. Then from week 3/4 boom! Constipation, indigestion, hot flushes (which are not bad at all and not that often), and this last week aches and pains in fingers (especially in a morning, struggle bending them), ankles and odd knee and shoulder pains. Appetite has got less as some days feel queasy. These side effects don’t Happen every day, some days I’m pain free and eat like a pig and can do lots of stuff around house. Other days just want to lie on settee have a sleep in afternoon. Today has been rough day, not eaten as much, aches and pains, and feeling queasy. Fingers crossed tomorrow will be good day! Heard few people have struggled with pains. Better than chemo on the whole but tough some days.

Hugs to al xx

Hi Samjane I’ve just started Letrozole as chemo not doing a great deal. Wondering how you’re getting on now? Jane

Samjane profile image
Samjane in reply to DouglasPouch

Hi, I had to stop the Letrozole as it wasn’t doing anything and my markers were starting to rise slowly, only to 105 but my onc is always straight in the case and won’t let it rise much more. I’m now just starting 4th line chemo and see how that goes. It was fine to take with little side effects for me. Fingers crossed it works well for you.

Sam x

DouglasPouch profile image
DouglasPouch in reply to Samjane

Thanks for letting me know Sam. Good luck with the chemo. Jane

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