Hi,
Sorry to hear you are suffering.
Have you researched alternative remedies? It seems odd you have to take these medications when you are no longer actively producing oestrogen.
I think there is a prescribed plan of action for all patients and that personal situations are not really accounted for. As it’s mostly based on research by drug companies there are no statistics for alternative approaches.
I wish you luck.
Sue
Mcnulcc when are you taking your tablets? I took mine in the morning at first and side effects were bad but my breast nurse told me to take them at 9 and it is much better. Most people ive spoken to take them in the evening. I have a daily rem8nder in my phone at 6pm! Hope you feel better soon xx
Hi there,
I was given letrozole and became very ill with depressive thoughts and shocking joints- knee and leg pains,after taking for a month so got changed to Tamoxifen and pains in all joints began within 5 days of taking. My diagnosis was grade 3 invasive bc, no nodes involved, Had a lumpectomy, was offered chemo due to grade but decided against this but had 15 rad sessions. I’m not sure what to do next, may try another anti oestrogen tablet. My bone scan came back as above average, so se don’t make sense to me.
I’m scared that I’ll get it again but if I can’t walk or function then I can’t work as my job involves driving and walking and my sick leave is maxed out now.
Today- I’m still in lots of pain from lower back and hips.
Hello Bella’s mum,
Sorry to hear you are still struggling with the letrozole. Don’t understand the Oncologist. Did he not give an explanation why he will not prescribe an alternative? I really could not do with the attitude described. I totally agree, I would ask for a second opinion from another Oncologist - go for it - nothing to lose. ? X
Hi Chick1
There wasn’t much discussion re medication. It was “well we will start you on letrozole, that’s ok isn’t it”
It didn’t feel like a question at all more of a statement. Perhaps I read too much or not enough into it and should have pursued it further. He mentioned bone health but I cannot recall being told of any other side effects. Just feel so fed up with it all!
Ps Chick1
I have rung twice over the last few weeks to discuss this issue. Spoken to oncologist secretary who has said I will hear back. No one has got back to me!
Hello again,
I know - it just feels like one thing on top of another wearing you down.
Strike back Bella! Are you still in touch with a BCN who you can discuss things with and they could help advocate your point? Or is your GP any use as they may help to move things along with Onco? Perhaps you may want to try and make use of patient advocation systems and gets in touch with PALS or equivalent, depending on your location in UK. They can help with communication to medical staff etc.
I know it is up to you whether you continue with letrozole or equivalent in the end. I think it would be a shame if management of your side effects were not fully explored or that a break wasn’t suggested and then to try an alternative if you are willing.
As far as I am concerned, most of the side effects anti-oestrogen treatment seems to have on us, even when post menapausal, demonstrates that oestrogen is still very much around in our bodies even if no ovary production. Bleeding stuff - a risk to be with or without!!!
Here’s hoping you get a resolution you are happy with. X ?
Hi
This looks like an old post. Have you already made your decision?
I too am asking this question, more so after reading some of the content here in this topic.
I have been on Letrozole for 7 months, during that time increased mobility issues due to joint pain and muscle weakness along with brain fog and anxiety. My prognosis is ‘poor’ Invasive Lobular 10cm tumour with 12 positive nodes seemed like a no brainer to take the little pills.
Then my hair, which had started falling out for fun from the beginning of treatment no longer covered my scalp … like glaring bright pink patches of skin shining through. Hair loss literally broke me into pieces, almost suicidal in my distress, unable to venture outside the house, constantly crying.
After explaining how I felt to my breast nurse and then to my Oncologist I’m currently 6 days into a 3 week drug holiday. Most of the joint and muscle pain has disappeared and I’m no longer bursting into tears at the slightest prod. I’m still very upset about my hair loss but instead of sitting around crying about it I’m looking at ways of dealing with the crisis, like using topical monoxidil, caffeine shampoo etc. and have ordered a wig so that if I want to … I can just shave the lot off and therefore stop worrying about the loss.
What is most worrying to me is the realisation of what Oestrogen deprivation was doing to my brain and my inability to cope with a problem !
My Oncologist is planning on starting me on Tamoxifen instead of Letrozole in 2 weeks … as far as I can glean, cognitive function is impaired with all these drugs.
After reading all comments in this forum I went to NHS predict … my 5 year survival with surgery only is 35% with the addition of hormone treatment this increases to 48%. A 13% chance of survival is not to be sniffed at BUT what good is survival if that is all it is ? I want to ‘live’ my life to the end and most importantly I want to be ‘ME’ to the end, capable of rational thinking and making my own choices.
At the end of my drug holiday I will make my decision whether to take Tamoxifen … Letrozole - I was more or less told to take it without any information ‘you will be on this for 10 years’ !
Maybe if I’d been better informed in the first place as to side effects I wouldn’t have taken the Letrozole would still have a full head of hair and been much less miserable for the last 7 months !
I admire everyone who perseveres with the side effects but for me, the most disturbing aspect of my mental and physical health under the influence of this drug, is that my husband of 40 years was also suffering greatly and I’d like us to be dancing and smiling at our 41st anniversary, even if it may be our last.
Hello
I have just started Letrozole and had my 1st Zoladax yesterday. I am 42 and had 1 grade 3 tumour 44mm and 3 grade 2 tumours, 1 micro mets and other lymph clear. I would like any advice on this treatment plan along with radiotherapy and they’re talking about me taking the new abemaciclib drug…
I requested the Oncotype test and my score came back as 5 very low risk of recurrence in 9 years and that was my grade 3 tumour tested! Very confused with it all and pre menopausal currently!
Hi everyone I to am on Letrozole and am finding so many changers in my body, sore jaw, problems with my teeth and stiffness in my joints. I was unable to have chemo as it nearly killed me ending in ICU for 11 days and hospital for 35 days. I am unsure what to do next.
Hi Milly
I do so wonder why these drugs with devastating side effects are doled out as routine when the percentage advantage is often so small?! I have a friend who, in her 70s, gave them up after being made so ill she couldn’t function properly so I was very wary of them when I was diagnosed with BC last December, but was told by the surgeon - before any of my results came back - that I’d definitely be taking them for the next 5 - 10 years - no discussion. I explained to the oncologist that, having already done one menopause, I was dreading doing any of it again and that I had an active job. He was very understanding and started by explaining my percentage risks and hormone therapy gave me only a 2% advantage! I was so relieved and said ‘no thanks’! He seemed happy enough with my decision - he didn’t try to persuade me otherwise. We didn’t even discuss it any more! I am 68 and we are still farming - the risks of osteoporosis or constantly feeling ill have to be balanced against that pesky 2%! However, the BC nurses and the radiotherapy nurse seemed to expect me to take the drug - to the extent of making me doubt myself, so that didn’t help. But I am horrified to hear of so many ladies suffering so much that some are incapacitated…your experience sounds awful! Quality of life sometimes seems to get forgotten!
Good luck?