66911members
353153posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Do I HAVE to take Letrozole??

59 REPLIES 59
Highlighted
Member

Re: Do I HAVE to take Letrozole??

Hi, I stopped taking letrozole because it made me feel awful, old, lots of joint pain and really moody. I now take Indol-3-Carbinol Plus. I read a lot of positive stuff on this tablet so have a read and see what you think. My breast cancer was hormone receptive and this tablet is a hormone inhibitor. I’ve got on really well with it and you can buy on line.  Hope this helps. Good luck to all you lovely ladies. Linda x

 

Highlighted
Community Champion

Re: Do I HAVE to take Letrozole??

Hi Bellas mum, I think you have been given sound advice on here, but I am concerned at the wording in your latest post. I hate that you feel you may be railroaded into treatment you don’t want. Can you take anyone with you who can support your point of view? I’m also worried at your wording of natural methods. As far as I know there’s no such thing. If cancer could be cured by supplements I think the NH S would have cottoned on and we’d all be taking them for cheapness. Letrozole works out about £100 per pill, so don’t take the prescription if you’re not going to use it. I do think you’re onto something re diet and exercise. I’ve found cutting down on sugar has minimised my sweats, and exercise has helped my joint pains. I do need a good nights uninterrupted sleep to combat fatigue, so know where you’re coming from. It took months for my body to settle down, and I have had a drug holiday when things got difficult. It’s your body, so it’s your decision. Good luck. X

Highlighted
Member

Re: Do I HAVE to take Letrozole??

My life expectancy is adequate after chemo and rads to come but I still choose to take Letrozole from next Friday because I want to make it as adequate as I possibly can . My cancer was hormone receptive so why not take the meds which block oestrogen ? trust the medical team ... 

Highlighted
Member

Re: Do I HAVE to take Letrozole??

Thank you for taking the time to write such a well-articulated piece. You echo my own sentiments exactly. I'm afraid that it's not just the younger ones who do this..my 'experienced' and mid-forties oncologist not only made it obvious that she hadn't read my notes but only did NHS Predict because I asked her to (I had already done it so I knew the result). In the face of the small amount of risk reduction which would ensue, she rail-roaded me into agreeing to take ET which I don't want. I will re-discuss but I have no confidence in her opinion and anyway she told me what 'they'  had decided at MDT. Just pure laziness in my opinion. I will decide but I am not feeling inclined to poison myself for five years and cause different damage to my body when my life expectancy looks adequate anyway. 

Highlighted
Member

Re: Do I HAVE to take Letrozole??

Hi two steps forward 

 

yes i I decided to stop taking it. I really could not face taking it with the way it made me feel. It took a few weeks for the side effects to to stop but feel so much better. Thank you for your interest x

Highlighted
Member

Re: Do I HAVE to take Letrozole??


@Bellas Mum wrote:

Hi All

 

been on Letrozole for 3 weeks and am feeling awful, whole body aches, terrible brain fog, feel really low, tired and lost all energy - moaning here but feel a complete mess. My cancer was very small and classed as low-intermediate risk, no lymph node involvement. Had Hysterectomy 5 years ago along with ovaries removed so not a lot of Oestrogen in my body at all as not had any sweats for years.

 

I am putting it out there as to whether I really need to take the meds. Happy to have the Rads but the side effects and subsequant risks of Letrozole make me really question if its worth it. I just feel that I am part of a plan where "this is what all women have so you will have it". I also saw an article on Letrozole only being used for advanced BC which is something I dont have.

 

Any advice/hints/tips and wise words please??


Hi

This looks like an old post. Have you already made your decision?

Highlighted
Member

Re: Do I HAVE to take Letrozole??

Aromatase Inhibitors (AIs) block the production of Aromatase in our fat cells which consequently blocks the production of oestrogen in our fat cells so, if we are post-menopausal, we stop producing oestrogen altogether.

 

Tamoxifen operates differently. There are two main oestrogen receptors, ER𝜶 and ERβ expressed throughout the brain. In general, ERβ is expressed at high levels in the hippocampus and temporal cortex, whilst ER𝜶 is expressed at higher levels in the amygdala and hypothalamus.

 

Multiple studies indicate that AIs and Tamoxifen can cross the blood-brain barrier. All AIs inhibit both ER𝜶 and ERβ whilst Tamoxifen has a mild stimulatory effect on ER𝜶 and completely blocks ERβ activity. 

 

My own experiences

Letrozole caused an allergic rash.

Anastrozole caused the following side effects after 9 1/2 weeks:

  • Severe joint and muscle pain well above normal, particularly left shoulder, upper arm (axillary node clearance) and left wrist (fractured May 2017). Increased pain in right wrist (arthritic). Both knees painful and stiff (already osteoarthritic but not normally painful).
  • Increased fatigue (above earlier level of chronic fatigue). Extreme sleepiness.
  • Mood changes, including severe depression and extreme irritability similar to PMT and menopause. Symptoms similar to earlier experience of hormonal disturbance, including problems with HRT and coming off it. No interest in anything or in doing anything.
  • Slower cognition; like thinking through pea soup. Difficulty finding words. Poorer short term memory than usual. Felt as though someone inside my head tinkering with it.
  • Slight metallic taste in mouth; at times, lack of taste altogether. Nausea.
  • Loss of interest in food; slight increase in weight despite small quantities of healthy foods.

The following information has come from research papers obtained from: NICE, the BMJ and the Lancet.

 

Exemestane is likely to prompt the same adverse effects as Anastrozole.

The Electronic Medicines Compendium states for Exemestane: ‘Most adverse reactions can be attributed to the normal pharmacological consequences of oestrogen deprivation.' 

My Consultant Oncologist has confirmed that the actions of all three Aromatase Inhibitors is much the same pharmacologically and that they all have the effect of removing all oestrogen from the body.

 

However, oestrogen is important throughout the body for its functioning, including in the brain for effective operation of neurotransmitters.

 

From a research paper (source: NICE) published 2014, several studies report the negative effects of Tamoxifen on cognitive function, patients in this group being significantly impaired on tasks involving memory, information processing and decision-making. The findings suggest that Tamoxifen plays an antagonistic role in the areas of the brain where oestrogen receptors are present, including the prefrontal cortex (higher level functioning), the hippocampus (factual and episodic memory) and the amygdala (controlling fight or flight and emotions). Other papers support this. The information on Tamoxifen in the electronic medicines compendium suggests that adverse effects are closely related to the drug's effects on the two oestrogen receptors. 

 

Other papers maintain that Tamoxifen and its active metabolites inhibit dopamine transporter function independently of the oestrogen receptors. Dopamine controls movement, cognition, mood and reward. The dopamine transporter modulates dopamine levels in the brain. Tamoxifen, as a dopamine antagonist, has the effect of lowering dopamine levels in the brain.

 

Dopamine levels can be significant in forms of depression, as well as the neurotransmitters serotonin and noradrenaline.

 

Some women are much more sensitive to oestrogen deprivation than others. I have decided not to continue with Endocrine Therapy on account of the conflict between the common side effects and aspects of my medical history. My BCN and GP are very sympathetic and supportive about this. My Consultant Oncologist is very sympathetic also, but unfortunately my review last week was dealt with by a very junior registrar (I would imagine about 25 or 26 and very under-experienced) who kept repeating that as I am strongly oestrogen +ve I need Endocrine Therapy to prevent cancer returning. It transpired he hadn't read any of my medical notes. Neither was he able to discuss the pharmacological implications of the different drugs. It was also clear he had no understanding of the pharmacology of antidepressants or the differences between different ones.

 

I wrote to my Consultant and so did my GP (who described my session with the Registrar as dysfunctional). My Consultant has invited me to make an appointment to see him personally to discuss issues further, so that should be within the next couple of weeks. 

 

I mention my own experiences because it seems the medical profession is still bent on treating cancer as though longevity is of prime importance and quality of life is secondary or not significant at all. The statistical information they quote (NHS Predict) is based on this view and takes no account of lifestyle, circumstances, diet or anything beyond age and pathology of tumour. It seems that young practioners especially are programmed to force treatments on to us which themselves can cause serious health problems.

 

No doubt some women benefit greatly from Endocrine Therapy and I am not attempting to put any of you off persevering with it, if that is what you feel is right for you.

 

I would say be prepared to question your Oncologist and BCN over the side effects and longer term effects of the drugs, and stress your own needs and requirements in your day-to-day life. Don't let anyone bully you into taking something you find intolerable. Medical opinions are gradually changing anyway.

 

Good luck.

 

Highlighted
Member

Re: Do I HAVE to take Letrozole??

Like you I have had terrible side effects from taking letrozole and have switched to exemestane but sadly this is not much better and am considering taking nothing and taking my chance with a recurrence of bc.

This is my second diagnosis in 15 years and last time was put on tamoxifen for 5 years and don't remember having any side effects but am beginning to feel that I can't put up with this for the next 5 years what is the point? I don't understand how differently these drugs work on breast cancer or why 1 is better than the other can anyone explain it to me in words that I can understand so hopefully I can make an informed choice and take back control of my life.

Highlighted
Member

Re: Do I HAVE to take Letrozole??

These vitamins and minerals are vital for our bodies to fight cancers. VIT B12. VIT D3. VIT C. MAGNESIUM. OMEGA 3 FISH OILS. TURMERIC WITH PEPPERINE ( BLACK PEPPER )  Pearl probiotic soft gel  for immune system is a must for all of us who are fighting to keep this at bay!! Even what we use on our underarms has to be rid of..Our shampoos etc' even our makeup contains Parabens which all have Carcinogenics in them. What moisturiser we use must NOT CONTAIN PARABENS..... YOU MUST BUY PRODUCTS THAT CONTAIN  (NO PARABENS ) THIS IS ESSENTIAL TO HEALING US.      READ THE LABELS 

Highlighted
Member

Re: Do I HAVE to take Letrozole??

These vitamins and minerals are vital for our bodies to fight cancers. VIT B12. VIT D3. VIT C. MAGNESIUM. OMEGA 3 FISH OILS. TURMERIC WITH PEPPERINE ( BLACK PEPPER )  Pearl probiotic soft gel  for immune system is a must for all of us who are fighting to keep this at bay!! Even what we use on our underarms has to be rid of..Our shampoos etc' even our makeup contains Parabens which all have Carcinogenics in them. What moisturiser we use must NOT CONTAIN PARABENS..... YOU MUST BUY PRODUCTS THAT CONTAIN  (NO PARABENS ) THIS IS ESSENTIAL TO HEALING US.      READ THE LABELS 

Highlighted
Member

Re: Do I HAVE to take Letrozole??

Thanks Chick1

 

not got much faith in my local hospital tbh. Contacted the BCN and she insisted that I take it. Am currently have a self imposed break until I see the surgeon on Friday. Not the best but couldn’t stand it any longer. No doubt I will get a telling off re stopping but I feel so much better and have been off it a week. Still getting hot flushes but joint pains have gone along with the headaches, depression, brain fog, gut issues etc. Have removed all dairy from my diet and eating chicken, fish and loadof veg. Lost a stone so far and have stopped alcohol apart from a cheeky G&T on a Friday so am trying to lessen my further risk by helping myself. 

 

My previous Oncologist was in another city and would be prepared to travel to see her as have not been discharged. 

 

Will see see how I get on

Highlighted
Community Champion

Re: Do I HAVE to take Letrozole??

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 🐥



Highlighted
Member

Re: Do I HAVE to take Letrozole??

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!
Highlighted
Member

Re: Do I HAVE to take Letrozole??

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!
Highlighted
Community Champion

Re: Do I HAVE to take Letrozole??

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
Highlighted
Member

Re: Do I HAVE to take Letrozole??

Going to ask for a 2nd opinion I think 

Highlighted
Community Champion

Re: Do I HAVE to take Letrozole??

Deb

 

Well you wont lose anything by asking your other oncologist to see what she says. xx

Highlighted
Member

Re: Do I HAVE to take Letrozole??

Nope he just said you will take this tablet. I asked about alternatives and he just said not suitable and went on to something else. Felt a bit railroaded to be honest 

 

Deb

Highlighted
Community Champion

Re: Do I HAVE to take Letrozole??

Deb

 

Did he say why?  Surely it is about what is best for you we have to take these tablets for such a long time.

 

Helena xx

Highlighted
Member

Re: Do I HAVE to take Letrozole??

Hi Helena

 

wouldnt entertain the idea when I discussed it with him. Back to the drawing board!

 

Deb x

Highlighted
Community Champion

Re: Do I HAVE to take Letrozole??

Deb

 

I dont know if your oncologist has thought about your taking tamoxifen.  I know it has its own side effects.  I am post menopausal and have osteoporosis so insread of having letrozole my oncologist put me on tamoxifen as it is kinder on the bones.

 

Helena

Highlighted
Member

Re: Do I HAVE to take Letrozole??

Thank you Bella99

 

i would love to hear how you get on. I really don’t want to take it as the side effects have been evil. I have trouble with my joints due to osteoarthritis and these damn tablets meant I could hardly move. 

 

I have looked at Predict and with the information I have it is a very low risk for me.  I have read and re-read so many studies and articles and like you have found that Letroziole does not completely stop the cancer returning. I am still under a different oncologist as had thyroid cancer 5 years ago. I could request a 2nd opinion from her but I feel that she would be just as cautious. I have also found some evidence that the treatment of radioactive iodine they gave me for the thyroid could cause breast cancer and that there is a possible link between the two cancers. 

 

The side effects re bone health, heart disease etc etc really put me off taking it especially as they had very clear margins, small tumour size and no node involvement. 

 

Please let let me know how you get on

 

Deb

Highlighted
Member

Re: Do I HAVE to take Letrozole??

We must be related I am Bella99!

Like you I am struggling with side effects of Letrozole.  I have found it hard to get engagment about risk with my medical team and indeed some of the cancer community.  My very nice oncologist talked to me about risk and my very low risk.  He even agreed that my risk was low and could understand why I might consider coming off the drugs - he then wrote to my GP with my prescription without mentioning our conversation or use of the NHS predict tools.  Cancer doctors are quite rightly a cautious bunch but it would be good to have the conversation and explore risk tools.  I am getting a second opinion this week from another hospital and want to explore the other risk tools such as the oncotype DX test (currently used to see whether someone should have chemo - but actually it assesses risk of reacurrence).  If I do decide to stay on or come off Letrozole I want to do so in an informed way looking at the evidence.  After all taking a drug like Letrozole is a long term commitment and only reduces risk (but does not prevent cancer reaccurence) and its side effects can impact quality of life including an impact on bone density.

I am happy to let you know how I get on.  I respect that everyone must make their own decision about what treatments they are or are not prepared to take.

Highlighted
Member

Re: Do I HAVE to take Letrozole??

Hi Lin

 

you really are suffering by the sounds of it. Not sure what to say really. It is difficult when having had breast cancer and the thought that it may come back but the thought of having 5 years of feeling crap is also daunting. Maybe have a conversation with the medics re alternatives? The only way I got a bit of relief is by taking the drug at night. 

I am dreading going back to work not feeling 100%. I like you drive and walk a lot as part of my job and I work in a quite rural part of the country so my driving covers a huge area. Daft question but have you tried pain killers? Sorry to be so obvious. 

Contact the forum and speak with a volunteer. I found it very helpful 

 

Hugs x

Highlighted
Member

Re: Do I HAVE to take Letrozole??

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.
Highlighted
Member

Re: Do I HAVE to take Letrozole??

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
Highlighted
Member

Re: Do I HAVE to take Letrozole??

Hi Lin

 

you have had an horrendous time by the sounds of it. Like someone said to me you don’t have to take it as it is your choice to refuse. It is difficult weighing up the pros and cons of treatment. My side effects do appear to be lessening but then I am not back at work yet so that my be a different story. I changed the time of day I took them and this has helped. I spoke to a volunteer from the breast cancer forum who was really helpful. There are different brands. 

Others hve spoken about natural remedies. There are plenty out there to boost oestrogen but I don’t know of ny to reduce it. 

I can fully understand how you are finding it depressing. The swollen leg does not sound good at all. 

I know the BC nurse will tell you to carry on taking it but at the end of the day you do have the right to refuse.

 

Big Hug and hope you get sorted x

Highlighted
Member

Re: Do I HAVE to take Letrozole??

Hi there,

I'm back on the forum as I did stop taking the letrozole after awaful se's and was given tamoxifen by my consultant. I started taking this two weeks ago and I've now stopped those as the se were horrendous for me. Pain in both shoulders, hips, hands and a swollen right leg! this was after a week of them...I've tried to be postiive, thibking it may be a different drug and I'd be alright.

 

I've looked at predict calculator so many times, trying to weigh up pros and cons of tking these drugs and wondering if I'm making a mistake stopping them, or whether having a quality of life now is more important...terrible diilemma.

Also, I wasn't able to drive because of my right leg, and I need to do this for my job,I've used all of my sick leave up and I'm single so rely on my income and god knows what will happen to me if I lose this.

 

I'm going to speak to bc nurse and see what they think...it's so depressing and stressful.

 

Lin

 

 

Highlighted
Member

Re: Do I HAVE to take Letrozole??

Hi Suzannah

 

i am nearly at the end of my radiotherapy and apart from a bit of pinkness to the skin have been ok. It is difficult as like you I have other medical issues and have had cancer elsewhere before. When I first started the Letrozole it was shocking but now I take them at night and am feeling a bit better. Currently tired as have a 2 hour round trip for the rad sbut nearly done. There are other threads on here re different makes of Letrozole and I spoke to someone from Breast Cancer Care support. They have been given Femara which is the original make of Letrozole and have found it better but very few medics will prescribe it due to the expense. 

Sorry to hear of your reaction to the chemo.  Horrible stuff. 

 

Hope we you get the treatment that’s right for you. Ask loads of questions. 

 

Good luck

Highlighted
Member

Re: Do I HAVE to take Letrozole??

Hi,

 

So sorry to hear about your dilemma.

 

I also have lots of underlying problems so am not looking forward to taking Letrasole either.

I have declined radiation treatment for the same reasons. I reckon extra years of pain and misery are not what  one wants to sign up for.

 

I had to abandon the chemo after one session due to dreadful reaction to the treatment.

 

I guess we will just have to decide according to our personal circumstances,

 

Good luck,

 Sue

Highlighted
Member

Re: Do I HAVE to take Letrozole??

Thanks Oh Suzannah 

i agree but apparently I have been told that even post menopausal women still produce oestrogen due to their fat!? I did start to take them at a different time and this has helped a bit. Have looked at natural remedies and the medics were very sceptical. I agree that it does appear to be a standard treatment plan so will ask more questions when I next see the Oncologist 

 

onwards and upwards!

Highlighted
Member

Re: Do I HAVE to take Letrozole??

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

Highlighted
Member

Re: Do I HAVE to take Letrozole??

Hi Chris

pleased to hear that things have improved due to taking the meds at a different time. 

Yes they did a CT as part of the planning session. They were brilliant and explained everything. I also attended an Enhanced Recovery Session which was put on by members of the Radiotherapy team. It was a couple of hours and went through everything. Got lots of useful information too so it may be worth asking if they do them in your area.

My bone scan is booked for 3rd July so an afternoon at the hospital for me.

You shouldn’t have to pay for parking if you are driving. The hospital I am at make sure anyone attending for treatment doesn’t have to pay. 

 

Let me know how you get on

 

Deb x

Highlighted
Member

Re: Do I HAVE to take Letrozole??

Bellas mum. Deb glad your session went well and you have all your future dates. My planning session is on 13th July so that's my next target date. Still waiting for my appointment for bone scan but understand that they are very busy at the moment. Did you have a CT scan at your planning meeting?. Glad to report feeling better after changing the time I take the Letrozole. Not feeling sick now just ache a bit in knees and ankle but I used to do a lot of running when I was younger so I'm not surprised the joints are playing up. Hope today's session is as positive for you. Chris x
Highlighted
Member

Re: Do I HAVE to take Letrozole??

Hi Mcnulcc
Had my first radiotherapy session today and it went well. Was nervous but nothing to worry about. Got the dates for the next 14 sessions so hoping they are all going to be as easy
Take care
Deb x
Highlighted
Member

Re: Do I HAVE to take Letrozole??

Hi BizzyLizzy

Thanks for replying. I was telling my OH about the se's. Not good is it and very scary. I hsd s break of a few days and started the meds again. Seems a little better. I also take pain killers before bed. My BCN told me that 2 weeks is not long! You have been through a lot recently not only with the BC but also moving home! Look after yourself x
Highlighted
Member

Re: Do I HAVE to take Letrozole??

Thanks Bellas Mum. Will call the number you suggested a bit later today. We have a sunflower centre here in Liverpool and I've been going to mindfulness sessions there but they have other groups so I'm going to ring them today and see if they can help in any way. Thanks again for your help it helps to know I'm not on my own in this. Good luck tomorrow let me know how you get on xx
Highlighted
Member

Re: Do I HAVE to take Letrozole??

Yes I spoke to 2 BCN,s one who made me feel about 5. I also rang and left a message with the Oncologist secretary to ask what would be best and heard nothing! The conclusion is not to stop taking them but at the end of the day they can't make me. I have spoken to someone from Breast Cancer Care and they are putting me in touch with a couple of volunteers who have been through what we are experiencing and how they coped. The number is further down this thread from Emily.

I had a break of about 5 days off the tablets and the started them again. I now take them mid afternoon. I have aches and pains again but have found that taking 2 paracetamol before bed helps me to get a better sleep which does help,with the pains a bit.  Have also invested in some fans recently as this heat wave is not helping.

i take lots of tablets too for other things. Spacing them throughout the day helps. I start my rads tomorrow and not looking forward to it but hey ho!

You will feel yourself again.  I would encourage you to talk to someone other than family,friends and OH. Whilst they love you and can support you they have not walked in your shoes.

 

You take care and you are not moaning and at times I don't think we give ourselves permission to be miserable when we are going through a crap time and struggling.  Xx

Highlighted
Member

Re: Do I HAVE to take Letrozole??

Hi Bellas Mum just wondering if you have any further news have you managed to get in touch with the BC nurse and if so what did she say. . I don't feel as sick now but have developed pain in my knees and ankle it's kept me awake almost all night. I feel as if I'm about 90 this morning. I have been getting more and more depressed since Friday and wonder what's the point. I'm taking so many tablets these days I hate the person I am becoming. My OH is still sleeping in the spare room as I'm so restless with the night sweats. I have only been taking this for two weeks and realise I need to give it a chance but I am so down this morning. I still have to get through my 15 sessions of Radiotherapy which do not t start until the end of July Sorry for the miserable post I just want to be the pre Cancer me again

Highlighted
Member

Re: Do I HAVE to take Letrozole??

Sorry my last post said 2years instead of two weeks 

I can't imagine taking this for two years !!! 

Highlighted
Member

Re: Do I HAVE to take Letrozole??

I am also wondering about this drug 

I have had ME and Fibromyalgia for 30years now but finally had managed to cope with part time work and freelance arts projects which I love.

I had a lumpectomy and stage 2 Grade 2 invasive ductile cancer with 3 lymph nodes positive and was recommended Chemo and Radiotherapy plus Hormone therapy 

I am 53 years old and refused Chemo as my immune system would not cope with it and the benefit was 6% over 10yrs in terms of life excpectancy.

I have 73% chance of being here in 10years according to Predict without letrozole .

i have only taken it two years and feel dreadful 

it is like having ME all over agsin

 muscle Aches - joint pain - fatigue - headaches and loss of appetite and anxiety 

i feel dreadful and needed to be ok as returning to work this weekend so couldn't take them as never would have coped. I felt better could walk - bend over - use my arms - keep awake and work and enjoy it.

i feel that as there is no guarantee that this drug will work and my quality of life will be seriously affected again.

I have agreed to persevere but have looked at alternatives- diet / supplements and exercise 

I know others who will not agree but it is our choice and nobody can force us to endure these SE 

Also stress and depression can make the body produce Cortisol which in turn can over time contribute to cancer recurrence.

i have had severe  depression and anxiety before and fear that this drug and its affects will bring it back which is to me as scary as cancer.

 

Highlighted
Member

Re: Do I HAVE to take Letrozole??

Hi Lin
Thanks for the reply. I had virtually the same as you in terms of tumour and surgery/treatment. Have started to take the medication at a different time of day and not with the rest of the medication I am on. So far so good.
Did not get a reply from my Onc when I rang so am going to talk it through with someone from BCC forum volunteers.

Good luck too x
Highlighted
Member

Re: Do I HAVE to take Letrozole??

Hi, I was given Letrozole following my lumpectomy stage 1-grade 3, no nodes involved and underwent rads for 15 sessions. I took them for around a month then felt so ill with leg pain which just didn't abate and moods swinging to and fro and feeling quite suicidal, which was v scary, that I spoke to the helpline, then my bcn and saw my Oncologist May 18th and he changed me onto Tamoxifen which I'm yet to begin as I've just moved home a month after finishing rads, and I'm already shattered and  the idea of side effects spiking has delayed me starting the tabs!

 

I'm dreading taking them, but will give it a go, if the se's are awful then I'll have to rethink again.

Another friend took Tamoxifen and couldn't tolerate them but was changed onto another tablet.

 

Ofcourse, I think it depends on what sort of tumour you've had, so talk to your Consultant, BCn, ask questions and be comfortable in making the right decision for YOU.

 

take care

Lin x

 

 

Highlighted
Member

Re: Do I HAVE to take Letrozole??

Thank you Sue and Bellas Mum will try taking at night and see if it gets better x
Highlighted
Member

Re: Do I HAVE to take Letrozole??

Thanks Sue x
Highlighted
Community Champion

Re: Do I HAVE to take Letrozole??

Ladies

Nausea can be a side effect initially, but it does wear off. Try taking the tablet in the evening, with food, and that seems to help.

Sue xx

Highlighted
Member

Re: Do I HAVE to take Letrozole??

Hi mcnulcc

I have had nausea, headaches and loss of appetite so I think it is a side effect. One lady on here didn't get any side effects for 6 weeks but mine weee virtually straight away and got worse. I will be ringing the BCC line later today

Highlighted
Member

Re: Do I HAVE to take Letrozole??

Hi I was prescribed Letrozole a week ago at my post surgery appointment. I had a lumpectomy and snb on 2 23rd May all good news from surgery just take tablets and start Rads on 30th July. For the last few days I have experienced nausea and wondered if this is common. I know its early days but I feel so sick I would just like reassurance that this is a temporary thing. Thank you
Highlighted
Member

Re: Do I HAVE to take Letrozole??

You're welcome Bellas Mum, we're open 9-5pm all week.

Best wishes,

Emily

Highlighted
Member

Re: Do I HAVE to take Letrozole??

Thanks Emily
Will call tomorrow and thanks again. That will be very helpful