Tamoxifen Versus Letrozole versus no drugs?

Just  seen that she had Femara. Was that because there were no generic brands when she started or did you have to pay?

Hiya Londonmumof2

After J had been on Letrozole for around 4 months or so she was given her 2nd Dexa (bone density) Scan and was found the letrozole was showing her to be slightly osteopaenic and was put on Adcal+ D3 one chew twice a day and a weekly Alendronic Acid 70mg tablet.

When she finished her 5 year sentence her Alendronic Acid was dropped and 2 years later the Adcal+D3 was replaced by just the Vit D tablet as her calcium levels were starting to creep up.

As for the Femara - she was given 2 packs post surgery by our hospital after these ran out she was given a generic (cannot remember which one) and almost instantly suffered aching joints and labyrinthitis. We were on quite friendly terms with our GP as his wife and J went through pregnancy at exactly the same time and he wrote her script out for Femara so she was able to have this all the way through. The pharmacist tried a few times to get her to change to a generic but lol 'No way Jose'

Getting Femara prescribed is as good as a lottery win, very rarely will they script it because of the price comparison :-/

J gained 2 dress sizes during hormone therapy (nearly all around the tum) and this hasn't reduced by much over the last couple of years post tablets. Seems you can control it to some extent but some have a lot more of a problem getting anywhere near back to the size they were - a few can can but it is a low %

There is a very good info page about weight gain while on Oestrogen busting tablets here at a US Breast Cancer.Org site and explains why it occurs.

Hope this is of some help, bummer though isn't it ? G n' J

Like some others, I too want to give a positive note. I had a mastectomy Dec 2019 and started Anastrozole on Jan 30th 2020. I had been terrified of the side effects, to an extent that I was refusing to start taking the drugs. My GP persuaded me eventually by promising to review after 6 months.

Some hot flushes, usually at night. Cured by sticking a foot out from under the duvet.

Joint pain - a bit, but more like feeling achey than anything really major. My hands feel a bit slow to get going but exercises to mobilise are really helping.

Facial hair - yes !!

Weight gain ? I have gained 1kg since January 30th. So not real weight gain, I don't think.

I have really injected physical activity into my lifestyle (yes, even during lockdown - call me Mrs Smug - Sorry !!) and I have noticed my BP has really gone down. Is that the meds ? Is it the increased sport ? Waiting to discuss it with my GP at the 6 month review.

With my (limited) hindsight, I would say the side effects I am experiencing are minimal and certainly I am able to live with them. I try to focus on how this drug is protecting me from having to go through this whole lot again - hopefully !! It is another part of the daily battle to keep control of my mind and not let it wander over to the dark side.

Hope this is useful to someone. 

Thanks Sasha

It is good of you to post for the first time to support others with your positive experience.

Thanks Dreamthief.

What really concerns my wife re Letrozole is how it significantly removes oestrogen from the body.  She knows this is a benefit in preventing cancer recurrence but worries about brain fog, joint pain, and the deleterious effects on your bones.  She also has a retinal eye problem and it has know retinal and macular issues, as experienced by Londonmumof2.  

We know that there are bone-building drugs but they too have side effects.

None of the drugs are palatable, but taking all things into consideration Tamoxifen being a SERM may not be so drastic on the body, despite its possible side effects.  It is a question of balancing risk against quality of life, which is a difficult call.

The other aspect I touched on previously is the possibility to take low dose oestrogen with Tamoxifen.  Having read Avrum Blluming's book 'Oestrogen Matters' (an American oncologist) his research evidence and advocacy of this strategy is quite compelling.  By way of example, Katrina Lang a BBC radio presenter appears to be doing well on this protocol.

Then there is the strategy of not taking any drug at all.  The PREDICT nomogram still gives high O.S. with just surgery alone.  It doesn't even take radiotherapy into account!

Most of the research papers I have looked at generally does not appear to show improved O.S. with these drugs.  What they do seem to prevent is recurrence and thus the trauma of repeat intervention.

D

If you are  considering the low dose oestrogen route would taking it on alternate days not do thr same/ maintain some oestrogen? The half life of letrozole is 2-3 days depending on how the individual metabolites it,  and the initial research showed that doses of 1mg daily were almost  as effective. Those with liver issues are prescribed it as once every other day. 

Hi,

   I started on Letrozole a few weeks ago.For the first three days had some bone ache had two hot water bottles that sorted it,now all gone.Brain fog from chemo very rare now and definitely no worse.Feeling great,skin looking good and able to garden most of the day,crocheting,cooking and reading the rest. Sleeping well.May need a vaginal lube lol!

  Re bone density drugs Zometa etc have not started this yet,but the advantage of this preventing mets is great.In my professional career as a pharmacist I only came across a few cases of jaw problems,and these were in the very elderly.More gut problems were caused by them not being taken correctly.The statistics of the reduction of mets as a found side effect of these drugs is well worth noting.

  Yvie

Thanks Yvie

Your reply was certainly very positive regarding Letrozole.

My wife had a lumpectomy last week.  The consultant said she should not commence a drug regime until after radiotherapy, which is to be 12 weeks after surgery.  We also have to wait for the full pathology report in 3 weeks time.

At the moment she still favours Tamoxifen despite the better statistical profile of Letrozole.  She has always been a believer in the benefits of oestrogen, and her diagnosis has not changed her belief.

Tamoxifen provides her with some oestrogenic benefits.

D

Hello Dedalus 

I just wanted to let you know I started Letrozole in May last year to shrink my cancer prior to my lumpectomy and lymph node clearance.It did the job and it shrunk from 35mm to 23mm and I had the operation in October 2019. I experienced no problems whatsoever on Letrozole. I’m fairly fit and healthy and literally was just peri-menopausal.  I’m due to start taking it again next week after surgery, chemo and radiotherapy have finished and hoping I have no problems again.

Good luck to your wife with her recovery.

Sarah

I am not sure why your wife does not want to take Letrozole but can i just tell you my experience of it.  I had chemotherapy following my mastectomy and then went onto Letrozole and Herceptin immediately afterwards. This was exactly a year ago and I have another 4 years on Letrozole and another month on Herceptin.

I must admit I do have joint pain but nothing that a couple of ibuprofen cant help. I am stiff when I get up in the morning and am much better if I keep moving. I do have arthritis as well so am not sure if the pain is my arthritis or the Letrozole but quite honestly it does not affect me greatly. It seems to affect different people in different ways.  What does her oncologist advise?

I have a bone scan regularly and also a heart scan and both are normal

Quite honestly I would go with what her oncologist recommends 

Love to both of you

Rosie x

Morning Dedalus

Hope your wife is continuing to recover well post surgery.

I think your wife is reading far too much into this oestrogen suspression question.  OK we all know oestogen is a feelgood hormone and lack of it brings on varied menopausal issues but if it is trying to kill you, reducing it in most effective way seems to be a bit of a no brainer ?

The which one is better for me Letrozole vs Tamoxifen question aside as long as she takes one of them to reduce her oestrogen.  Standard is pre-meno Tamoxifen; post-meno one of the AI's. Most gp's would want to switch her from Tamoxifen to one of the AI's after 18-24 months anyway.

J had 5 years on Letrozole without too many problems; and considers it a small price to pay for now being cancer free.

Take care, G n' J