Member
Posts: 118
Registered: ‎01-05-2012

Re: LETROZOLE - I want my wife/life back.

I am really struggling with pain in my lowers arms they just seem to be aching all the time . I was diagnosed with DCIS 5 years and have been great until I was changed to letrozole. I am really worried that it might be more than the letrozole should I ask for a bone scan? 

Member
Posts: 391
Registered: ‎01-10-2013

Re: LETROZOLE - I want my wife/life back.

Hi (I can't call you Pecky!)

 

I am so sorry you both are going through such a long and difficult period. It can take a long time to recover from treatment and in many ways things never get back to 'normal'.

 

My experience was lumpectomy, snb, radiotherapy and Tamoxifen, starting just over two years ago. I too experience the tiredness, hot flushes, cold sweats and mental fuzziness. I do not know what to put it down to, the whole experience, the surgery, the trauma or the medication or the cullmination of it all. I guess some of it is just getting a little older too!

 

I try to excercise as much as I can, I take lots of vitamins and omega pills. The tiredness comes and goes, some days I am yawning my head off mid-morning, other days I am out for the count by 8pm. 

 

I too find the mental changes the most disturbing and when I have bad days I really wonder if I am suffering from early-onset dementia. My stategies are to ensure everything gets written down, to-do lists, passwords etc. I have found cognitive training to be helpful and the more I do and get organised the better it is.

 

Have either of you considered some counselling? Free counselling is available and I really found it helpful.

 

Take care.

 

Mary 

Member
Posts: 1
Registered: ‎04-12-2015

Re: LETROZOLE - I want my wife/life back.

Hello everyone. I'm not sure how many men you have contributing, but I'm sure I'm not the only one.

 

My lovely wife was diagnosed with Breast Cancer just before her 40th birthday in December 2010. She had 9 months of Chemo which included Herceptin and Docetaxel, Radiotherapy, and  a mastectomy with lymph node removal. This was followed by a couple of years of Tamoxifen.

After suffering abdominal cramps, she had both Ovaries removed due to cysts, (I'm convinved this was the start of Ovarian Cancer caused by Tamoxifen.), but no one ever biopsied them. I still wonder why.

 

At 42 she was then post-menopausal, (she was happy never to buy sanitary towels ever again),and the meds changed to Anastrazole. Unfortunately, the side effects meant a change to Exemestane. These were no better. The only other option was Letrazole. She is now 5 years down the road from diagnosis.

 

We expected the side effects during all the hospital treatment, not 5 yrs down the road.

She is tired all the time. Her libido (and mine) has gone. Which is bloody annoying since we have been together for 26 years and always had a great sex life. (well I enjoyed it !)

 

She is in constant pain from her finger, elbow and knee joints. Walking, flipping the bird and elbowing her way to the bar all cause her pain. Her sight had deteriorated rapidly, so much so that she has gone from single lenses to variofocals in a year. She gets blinding headaches at random times. She gets dizzy spells and heart palpitations at really odd times when there has been no physical or sporting activity . Then there are night sweats - but she complaints of being cold most of the time. She has nightmares and mumbles and shouts incoherently. She jerks around quite alot too. Sometimes for hours. Its like trying to sleep whilst Usain Bolt does laps round the bed. She / We havent slept properly for five years and for the past year, I've slept mainly in the spare room to increase the chance of at least one of us getting some sleep.

 

These symptoms are miserable but my greatest fear is for her mental health. This is a woman, who was good with numbers, who could make quick fire, informed decisions in high pressure situations. She was confident, outgoing and well respected in the organisation that we work for. She could juggle numerous work and home tasks, whilst enjoying a glorious social life.

 

Now she struggles to remember the dog's name. She will start a sentence and forget what she was going to say by the end of it. She cant remember words for things, and generally we just point at things now, or go through a game of Charades with me shouting out words like, "tea pot", "skirting board" and "butt plug" just for a laugh. She is definately going to win at Christmas - unless she forgets the name of the film / book/ TV programme. Our friends are all called "Thingy" or, "You know...your mate..." Her short term memory is worse than mine. I normally get asked three times if I want a cup of tea. Sometimes it never arrives. When it does arrive, sometimes its coffee.

OK, some of this is an exaggeration, but its gone on for so long now....

 

And she's got so aggressive and argumentative. (she'll deny it). Most husbands are wrong at some point. I'm wrong most of the time, and probably wrong for the rest of it too. I can never win an argument and minor discussions normally turn south.

 

I am absolutely convinced that many of these symptoms are side effects of these drugs. (Most are listed on the paper info sheet in the box). I want her to stop taking them, but shes convinced the Cancer will come back. The yearly Oncology check up was **bleep**e. It wasnt even her Consultant, just some Egyptian dude on a work visa. He was more interested in looking at the new breast than talking about her meds. He didnt even do a blood test. It would appear that after the third year of survival, you become a bit of an inconvenience to the Oncology Dept. We have become very reliant on the MacMillan nurse and regularly call in with tea and cakes for a chat.

 

After keeping it all together for five years, running around all the hospitals, bringing up our child, keeping house, running a Sea Cadet Unit and holding down a full time job as a Police Officer on shifts, around about Christmas last year, I had my own quiet mental breakdown.

I turned the light off, and for a while and my mind went for a little walk.

I never saw it coming. I was diagnosed with stress, extreme anxiety, depression and PTSD. I went back to work after five months and now train others to do the job I can no longer face.

Was Cancer a contributing factor? Probably. Were the side effects a contributing factor - Hell yes!, just see above.

 

I'm not sure I can stand to watch another five years of these side effects or the continual detriment to her health. Is Osteoporosis, Dizziness, Joint pain, and deteriorating mental health worse than secondary breast cancer?

Which is going to extend her life expectancy or degrade our quality of life.?

 

Is there any alternative or are we stuck in a Catch 22?

 

This all sounds like a moan and whinge, but its not. Its become normality for us. We have laughed a lot in the past five years, mainly at ourselves. We have become emotionally closer and sometimes she remembers my real name (Which I think is **bleep**head by the way). I am just grateful that I have my wife and she has her life.

 

Member
Posts: 7
Registered: ‎16-01-2014

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Grumpy,

 

I am on Adcal also but, thankfully, I don't seem to get any side effects' from taking them. Glad you managed to find an alternative that provides the same dosage hope they continue to work well for you.

 

Deffo worth a try though for those of us that experience problems from the tablet.

 

Member
Posts: 989
Registered: ‎01-05-2012

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Bone thinning when taking AIs...... I was prescribed Adcal, only took them for 4 weeks, couldn't cope with gut problems at all. My GP worked out how many of the over the counter calcium and vitamin d tablets to take to get the same dose (4 each day) so that's what I do now. Clinic happy with this strategy. Might be worth a try.

Grumpy

Member
Posts: 2
Registered: ‎15-05-2014

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi everyone,

 

What interesting reading this thread makes!    I have been on Letrozole for nearly 2 years and these past few months have been horrendous, I seriously feel like a 90 year old!   My oncologist had always told me it was because I was taking Letrozole and Zoladex but I finished my Zoladex in Feb 2014 and since then I've got worse, not better as I had hoped!   I saw my oncologist again last Wednesday and he has told me to ask my GP for Femara brand so I'm seeing my GP tomorrow.    Hopefully I will start to feel a bit better!    I also had an xray on my knees last weds whilst at the hospital as I have been complaining of them being really painful, the oncologist says my bones do look like they are closer together than they should be but got to wait for the report to be done - now my ankle has started and I'm struggling! I'm hoping (and silently praying) Femara will help!    

Member
Posts: 7
Registered: ‎16-01-2014

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi everybody,

 

I previously posted about the awful side effects I was experiencing from Letrozole.  I made an appointment to see my GP and he agreed to prescribe me with Femara again instead of all the other brands I was getting. Since that time I am pleased to say that the side effects have much improved.  Although they have obviously not gone completely and probably never will,  I am grateful for the improvement.

 

Love and hope to everybody

 

Patsy

 

 

Member
Posts: 7
Registered: ‎16-01-2014

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Thank you so much for that information June.  I will most definitely call the number you provided and keep my fingers firmly crossed whilst I do so.

 

Many thanks

Patsy.

Member
Posts: 3,842
Registered: ‎01-05-2012

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hello PatsyT

 

Welcome to the forums.

Whilst waiting for replies to your post maybe you would like to give our free helpline a call where the staff can offer practical information as well as emotional support. 

The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

 

Best wishes

June, moderator

 

 

Member
Posts: 7
Registered: ‎16-01-2014

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Everybody

 

I have just found this forum and I am so pleased that I did.  I have been taking Letrozole for 4 years and at first the brand name was Femara and I had no problems.  I went to collect my prescription one day about a year ago and noticed that the box containing my Letrozole was not labelled Femara.  I queried this with the pharmacist and he stated that the strength was the same and the brand doesn't matter.  After reading some of the comments on here I am beginning to wonder. For the past ear I have been in pain with aching joints and hips.  I have always been active but I feel this is really affecting my quality of life, no matter how I sit or stand I have a pain somewhere.  

 

Although  I would never wish this on anybody I am really relieved to find that there are others experiencing the same problems.  I have read some interesting suggestions on here and I will defintely try some of them especially the supplements.  I am going back to my GP to ask about being put back on Femara just to see if there is any difference,although as somebody said due to the cost I don't suppose I will have much luck.

 

 

Member
Posts: 49
Registered: ‎28-08-2013

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi

I just wanted to offer another view.

 

I've just passed my 5 years on femara and am on them for another 5 years. At first  I thought 'I can't do this for 5 years.....it's as bad as chemo'.............but after a few months the side effects gradually eased. Ok, I've put on weight, my libido is zero, my bone density has decreased......but I'm still here & I'll gladly put up with the side effects that I have as an alternative to stage iv.

 

I do feel for those who have horrendous side effects, but there are some who don't persevere and give up at the first hurdle.

 

 

Member
Posts: 49
Registered: ‎28-08-2013

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi

I just wanted to offer another view.

 

I've just passed my 5 years on femara and am on them for another 5 years. At first  I thought 'I can't do this for 5 years.....it's as bad as chemo'.............but after a few months the side effects gradually eased. Ok, I've put on weight, my libido is zero, my bone density has decreased......but I'm still here & I'll gladly put up with the side effects that I have as an alternative to stage iv.

 

I do feel for those who have horrendous side effects, but there are some who don't persevere and give up at the first hurdle.

 

 

Member
Posts: 2
Registered: ‎10-12-2013

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

I didn't see the original post but I reduced 10% or more of bone density in my first 2.5 years on letrazole then my naturopath and I talked about other symptoms like cramping and jaw tension and I stopped taking calcium tablets (only once in a while) and went on magnesium and Vit D ... have regained 7.6% bone density. Just finished tablets yesterday.

Member
Posts: 126
Registered: ‎01-05-2012

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Try phoning the Osteoporosis society , there are lots of different drugs, even 6 monthly injections you can have , sadly you have to be fairly assertive . I was very happy on Strontium Ranelate till the latest research findings on it. Nothings easy is it.
Member
Posts: 126
Registered: ‎01-05-2012

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Sandra ! Long time - hope i've got the right Sandra and you are well. Still on Femara? i get given all sorts of brands, and suffering depression, dizzy head, nausea, never had any of that before, it all came on gradually - heard of that before on Letrozole please ? Blood tests all neg.
Member
Posts: 1
Registered: ‎29-08-2013

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi,  I'm so glad I read your letter. The hospital keep denying that all of the terrible side effects I have are anything to do with the Letrazole & the zoladex. So I've just had a full body scan, which scared the life out of me, as they are saying it's not normal to feel sick & weak all the time, with headaches & loss of apetite.

Not just that, it's now a huge effort just to go for a long walk, I feel 90 years old. walking up stairs, leaves me breathless, with my knees & lower calves throbbing.

I have to wear a vest & shorts all the time, otherwise I feel like I'm being strangled, with my chest & calves throbbing & pouring with sweat.  I wake up at night soaked with sweat.

It was only when I suddenly remembered the awful side effects of the tamoxifen, that I had to stop taking 14 years ago, where just getting on a bus made me want to vomit, that I decided to read other peoples stories.

I feel better now, after taking a Metoclopramide anti sickness tab.  But now I've decided to have the dangerous op to remove the cancer from my neck, as these Meds have practically robbed me of any quality life.

Member
Posts: 11
Registered: ‎01-05-2012

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

I have been taking letrozole for 8 months and have suffered from personal dryness but seem to have tolerated the letrozole quite well. I had a bone density scan and have been advised to take medication but I have been unable to tolerate any of the three different medicines that have been prescribed they all gave me terrible tummy problems, but I keep being told by the doctors that I must take this medication as anyone else been through this and found a solution.

Member
Posts: 30
Registered: ‎01-05-2012

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi everyone, thank's for all the info.....so good to know i'm not alone! I havn't taKen the letrozole for six days now and am feeling little better. Have to have anti-nausea from rhe nurse everyday and top up with pillls inbetween. I can hardly eat a thing and have no appitite at all still. Can anyone tell me how long it it them to get better after they stopped the drug? Am waithing for the results of loads of scans to see if it is anything more sinister and have to see the oncologist of Friday. Love and hope to everyone. Thanks all xxxxx

Member
Posts: 477
Registered: ‎01-05-2012

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Ladies,
Can i join in,iam 49,Have had chemo,Rads and started on Letrozole on 7th January.I was ok for the first few weeks,but 0MG now i feel like an old woman,most of the time i walk with a permanent limp.My knees are awful.Iam taking Glucostamine and fish oils,but dont seem to be doing anything.Hoping the SEs get better.
I find the limping more embarassing than i ever did with having a bald head.Sorry you other ladies are suffering,but glad iam not alone.

Member
Posts: 14
Registered: ‎01-05-2012

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi,

reading this had made me feel i'm not going mad !!! i've been on letrozole along with zoladex monthly injections since November 2011 and have been having terrible pains in my legs, knees, back, feet , hands somedays i find it hard work just to walk, have been going back and forth to my onc who even suggested at one point that these pains were all in my mind but i made it quiet clear that they wasn't in my mind so they run some blood tests which showed i was very low in Vitamin D and Folic Acid which i now take supplements for everyday but the pains are getting worse all this week ive been getting cramps in my fingers. Im also on a tablet which treats people for epilepsy. I'm 39 years old and my body just feels so old.