Tamoxifen Versus Letrozole versus no drugs?

Dreamthief,

            I  agree,totally.To feed the beast or switch it off!!Especially the pesky BC stem cells that may have gone walkabout!

                  Yvie

                 Stay safe everyone

  Perhaps people reading this would like to see the results of this trial.It was taken off being blind due to the successful results coming through and people had a the choice of jumping to the other arm of the trial.....

                  BIG 1–98 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2747391/

                 Trial title

Thanks to all the Letrozole contributors to this thread. 

It would be useful to also receive some replies from those on Tamoxifen.  Are there any Tamoxifen advocates out there, or indeed those not taking any drugs at all?

The reason for concern over Letrozole specifically, but AIs in general, is multifactorial.  One of the most significant factors are the numerous negative QOL experiences mentioned on this site and elsewhere.  Then there is the officially published range of side effects that correlate with the anecdotes.  I don’t, therefore, believe that my wife is having an irrational response in being quite apprehensive about Letrozole.

The side effects she is most concerned about are the effects on cognition and mood, as well as the muscular/skeletal problems.  I know that these can be ameliorated by further drugs like bisphosphonates, analgesics and antidepressants, but they come with their own particular negatives and burdens.

For my wife, it was not simply a matter of oestrogen being a ‘feel-good hormone’ she took it more for the specific physical benefits of bone, brain and tissue protection, including her eyes.  For her, it was a ‘no brainer’ to take it following a surgical menopause due to fibroids. 

In applying logic to the question of oestrogen in the body it is puzzling that it is unusual for young women to experience breast cancer.  By way of contrast, breast cancer increases with age when oestrogen declines.  8 out of 10 breast cancers are diagnosed in women over 50, which is generally peri or post-menopausal.   So is oestrogen a friend or foe?  

Avrum Bluming an American oncologist goes against the mainstream and refers to extensive research which supports the benefits of oestrogen and HRT for life.   In the UK Professor John Studd and Dr Michael Baum are also pro oestrogen.  The WHI anti HRT and oestrogen research has now largely been discredited as being flawed.

It may not transpire, but my wife may consider the possibility of a low dose oestrogen patch in conjunction with a SERM like Tamoxifen, or Tamoxifen on its own, in order to maintain QOL. This, of course, would be dependent on her pathology report.  There are a few documented examples of prominent women successfully following this path, plus Bluming’s own wife and daughter.  It would not be possible to do this with an AI.

We appreciate all the positive input and personal experience with Letrozole.  It is something we will be giving close consideration to, in the coming weeks.

The toxicity of drugs and treatments are something I have had personal experience of in my own cancer journey.  The pros and cons have to be carefully considered.

Best wishes, and thanks again.

Dedalus

I don’t drop by too often these days as I like to feel my new normal is a great place to be

I have been on Letrozole the Femara brand for nigh on 2 years . And as Elton would sing “ I’m still standing yeah yeah yeah”

Yes early doors I wondered how I would cope with the aches and pains; the hot sweats and the tiredness. But I have . I would in ‘normal’ times being chasing around after my grandson at least once per week ; I’d be at Aquafit twice per week and Tai Chi plus my lovely Rock Choir 

So what I’m saying is: the short term issues are for me outweighed by the long term peace of mind.

One thing I would stress ( and I do believe has hinted at this ) is ‘Don't over think it .’ At the end of the day your wife has the decision in HER hands

Stay safe 

Leolady56

Still galloping first those who remember me

Hi Sasha

Just wanted to say how wonderfully optimistic your post has made me -thank you so much.

From the sounds of it, you're further on in your treatment than me and doing so well.

I've just finished chemo and am due to start radiotherapy. Then it'll be Letrozole - had first infusion of Zolodronic acid which caused a night of flu like symptoms and most unwelcome (but very short lived) pain in arthritic hands and feet!

Like you were, I'm dreading the start of Hormone treatment in the view of the fact that it may affect the oestrogen receptors, primarily in the small joints - just where I have the arthritis!

May I ask if you suffer from osteo arthritis? I'm 62 it was diagnosed 8 years ago in my thumbs and feet.  I've always been very fit and active (plus occasional pain killers) and the thought of constant pain in joints is distressing!

So, many thanks again for such a positive post -a real morale booster. 'Nearly normal' is a feeling I'm really looking forward to regaining 

Maggie 

Hi Maggie

I am 61 and was also diagnosed with inflammatory arthritis about 10 years ago , it was very bad in my hands, was put on methotrexate and chloroquine. About 5 years ago I was taken off these and was said to be in remission, I am fit and active walk , swim was going to the gym before all this happened.so yes I was worried about the side effects one of them being the joint pain and by the time I had finished chemotherapy didn’t want anymore side effects.

Just to let you know I started it on a January 1 st and it has been the least noticeable of all the treatments , I get the odd hot flush but I’ve been having them on and of for the last five years, other than that some mornings when I get I have initial stiffness in walking  down the stairs but that soon wears off, I don’t know if this is due to age my husband also has the same problem and nothing wrong with him. So yes nearly normal , however after a year of treatment , we were looking to go off to Europe finished my infusion of Zolodronic on 12 March was giving ourselves a month to plan the trip and were off on 12 th April, however you know the rest..

Had my final appointment with the consultant by phone on 10 th April, have had a second mammogram to my other breast that came back as nothing detected,So not seeing anyone for a year now.I notice that you are awake either very early or up very late, try not to over think things or worry about something that may not happen, I tell myself I have done everything I can to survive this, and am now taking Letrozole to prevent further need for treatment. Live for each day as it happens , and it does get better , I still have emotional days but these are few and far between. The positive effect of the lockdown for me is I have been forced into taking it easy , I am a bit  gung  ho and tend to go at life full pace, it has given me time to heal both physically and mentally.

i wish you lots of love and remember to look after yourself 

sasha 

Hi Sasha

Thank you so very much for your reply, how truly wonderful to hear you're doing so well, sounds like we have the same attitude to life, I like the sound of your 'Gung-ho' tendencies

You're right, every day as it comes is the way - I happily overdid it yesterday playing ping pong with my daughter in the garden, thrilled to find that I could still jump around 2 weeks after finishing chemo. In bed shattered at 8pm, then awake again at 4.30 am, must try to break that cycle - you're right, to much over-thinking and anticipation, never wise!

Healing time certainly needed, I'm swinging between euphoria at finishing chemo and worry about future treatment, which is probably unnecessary, but I know my brain will calm itself down eventually!!

Hope you get your thoroughly deserved Europe break next year,

Love and thanks 

Maggie