Aromatase inhibitors V Tamoxifen

[Liz61]

Anyone got any thoughts on whether the change from Tamoxifen to an aromatase inhibitor is the right thing to do? I have been taking Tamoxifen for 5 years and as I am now past the menapause, my oncologist has given me the option of changing from Tamoxifen onto an AH. I don't like being given the choice, I'd rather be told what to do! I have coped well in recent years with Tamoxifen, but I think that there is a better outlook for the future on an AH. I am now 54 and was diagnosed is 2010. It may be a case of 'better the devil you know!'

[Janny1306]

I did 2 years on tamoxifen then 3 yrs on aromasin and alendronic acid then back on tamoxifen for the last5 years I,ll be 60 in September and I think that the oncologists know what's best so be guided by them 😊 ✊👌 we got this thing beat xxx

[Annie69 in reply to Janny1306]

Hello Jenny.

May I ask - when did you have your operation? So many years of treatment. I only had my diagnosis 1 and a half weeks ago. I thought it would be finished after the operation. Just shows how much I know.

Ann xx

[Janny1306 in reply to Annie69]

Hi Ann I,m coming up for 10 yrs since my op on Aug 8th I,m just hoping they don't make me do another 5yrs on tamoxifen lol but seriously yr oncologist will tell you what's best for YOU according to present research so be guided by them I,m just glad to still be here alive and kicking albeit a bit more wrinkly and with thinning bones(,I had my first fracture ...wrist...a year ago) all the best to you Ann xxxx✊

[Janny1306 in reply to Annie69]

Oh and just thought I,d mention teeth the alendronic acid causes problems if you need extractions so get yr teeth sorted if you change over xx

[Annie69 in reply to Janny1306]

Thanks Janny.

I might just have to stop fighting and go along with the medics. It's not in my nature to do what I'm told !!!!

I already have Alendronic Acid for rheumatoid arthritis. No problems with it except the strange instructions for taking it. 6 days a week I usually knock back my other pills with milk to protect my stomach, then settle down back to bed to watch the early news or have an extra sleep. On Alendronic Acid day I wander round watching the clock for half an hour. And I hate taking pills with water.

When I started AAcid I had trouble getting a dentist who would take me and used the hospital school of dentistry which was super excellent. On the whole, in my experience, dentists don't always keep up with current medical advances, especially biologicals (it is advised to tell the dentist you are on it). You wouldn't believe the number of times I've been asked, "What's a biological drug?, what does it do?" But they all know about A.Acid!

Ann x

[Janny1306 in reply to Annie69]

Unfortunately I have a mouthful (had!!!) of crowns that are over ,30\35 yrs old and failing they seem to break off at the gum line my dentist referred me to hospital for the actual extraction while I was taking A acid I would've liked implants but they weren't an option because of the alendronic acid I,m thinking about them again now I,m off it but cost puts me off! I used to take it on Sunday morning because I had more time but I never liked it because I seemed to get lots of aching joints while i was on it . Wishing you all the good things xxx😀

[Annie69 in reply to Janny1306]

Hi Janny.

Bloomin teeth. Broke my front ones when I was at school playing hockey. Today I could have sued them for millions!

Once the big bad dentist gets hold of you you are stuffed!

Interesting that you can't have implants because of the A Acid. I didn't know that. Can't afford them anyway!

Stay well.

Annx

[Janny1306 in reply to Annie69]

Hi Ann you said you only recently had your diagnosis, how are you doing and when will you have your op?

[Artemis-angel]

Hi I was on tamoxifen for 5 1/2 years and as I am now 52 have switched to letrizole, which my oncologist advised. I am also still having zoladex injections. I have noticed that I have less hot flushes and better sleep since switching.

[biddenden_sue]

I switched from Tamoxifen to Anastrozole after a year because I was post menopause. They do different things, so I was keen to switch as I knew I'd be better protected. However the aramatase inhibitors can cause osteoporosis so you have to have your bones scanned before you start then keep an eye on them. So if you already have bone problems, you may not want to switch. Otherwise, I'd say it's the wise thing to do.

[Jillyannepope28]

Hi Liz X i took Tamoxofen for five years and have just changed to letrazole X I'm 56 and they recommended the changeover , I felt exactly like you better the devil you know , I've not noticed anything different apart from the night sweats X they are worse but on the up side Tamoxofen affected my hair it was so thin but now on on letrazole it seems to be thicker X there seems to be different side effects to all medication but I hope this helps you to make the right choice for you X good luck 💕You can always ask to change back if you are not happy with the new medication X X

[Liz61]

Thanks for all your replies. I am going to have a good think about it. Getting input has really helped. x

[Cathy777 in reply to Liz61]

Well I want to add my thoughts because I have been on tamoxifen since 2011 and wanted to change to Letrozole after hearing its better after menopause. But my doc said as I had rheumatoid arthritis it may not be such a good idea. I have got to discuss with my rheumatologist first. Who, coincidentally, is right next door to my oncologist! But asking them to liaise is like getting Putin and Obama to have tea and cakes together.

[Annie69 in reply to Cathy777]

Hello Cathy.

I have just seen your post of 17 days ago. I also have RA and take shedloads of drugs for it, including an annual infusion of a biological. My breast cancer surgeon says he's checked with the rheumatologist and it's all OK but hasn't gone into detail, i.e. what did the rheumy say? What did your rheumy say, if you've asked him yet? I started Letrozole last week.

You'd think it was a national secret and I'm the spy.

Cheers

Ann xx

[Cathy777 in reply to Annie69]

Hi Ann

My hospital The Royal Free in London is letting me down big time right now. I can't seem to get appointments with anyone to sort out my questions. I don't have a rheumy appointment til 29 august which will assess my rituximab infusion. I am in a lot of pain right now so am not confident about it working. The doctor at my breast clinic is a stand-in and he is so unhelpful. So right now I am in limbo. How long since your breast surgery if you don't mind me asking? I had mastectomy in 2011. I was told by Breast Cancer Care that Letrozole is better for my age etc but I need to find out if my rheumy agree. You would think this was something they should know. Hope you OK with the BC.

Cathy xxx

[Annie69 in reply to Cathy777]

Hi Cathy.

No surgery yet, only had my diagnosis 2 weeks ago. My biologic is also rituximab. I have trusted my BC surgeon that he actually DID speak to my rheumy and was told Letrozole is OK - I am on day 5 of taking it!! I would like to have been party to a chat between them. It's as if it isn't my breast any more. Yes, it's an ordinary biologic and they SHOULD know. My breast cancer nurse keeps phoning to see which treatment plan I want, but without more information I don't know.

I had my first rituximab infusion in late November last year and I should have been called in at 4 to 5 months for a revue but -nothing. I also had lots of pain after Riruximab, the best bio I had was Humira, but stopped working after 8 years of bliss.

You had surgery in 2011? Call me stupid, but I thought it would all be over after the operation. Shows how much I know.

Did you have a reconstruction?

Best wishes,Ann xx

[Cathy777 in reply to Annie69]

Yes I had an immediate reconstruction. It was all confusing back then because I was put on Letrozole and got such terrible aches which was a possible side effect so they switched me to tamoxifen. But I was then diagnosed with RA (I believe due to the trauma) so I don't think it was the Letrozole causing aches but the RA. But because Letrozole can cause bone damage they want my rheumy to agree if its OK for me. If I thought Letrozole could cause my RA to worsen I would stick with tamoxifen. But tamoxifen can cause womb cancer and I kept getting cysts in my womb so had to have hysterectomy. It doesn't seem to end after surgery but hopefully it will be better for you. So rituximab not helping you? I am only 6 weeks post my first infusion and they say it can take 3 months to kick in.

Are you having a mastectomy? How are you coping...you sound pretty accepting about it.

Cathy

Xx

[Cathy777 in reply to Cathy777]

Oh by the way, I stopped adcal as it made me sick so I was told I could have an annual infusion of some same drug. But that was months ago and still not heard a word. Must chase that up too. Where are you Ann?

[Annie69 in reply to Cathy777]

Hi Cathy.

The literature on Rituximab is a bit optimistic, but it did start to help at round about 6 months. I managed to halve the painkillers and keep that going so it must have been doing something good. I've had RA for 45 years, very young when I got it, and the biologics are wonderful. If there had been biologics when I first had it my life would have been a lot easier. Hooray for biologics!!! I'm sure you will start feeling it, but, as the Letrazole is said to cause some pains you won't know which is doing it.

Thanks for the tip about the bone scan - I will ask for one.

I will probably have which operation they want to do because they'll always have an excuse. Now isn't that pessimistic? I am afraid that, because I have 40 Gcup breasts, and I will ask for medium sized ones, I will end up with one like a cupcake and one like a doughnut.

Sorry about your hysterectomy. You have really been through the mill.

Ann xx

[lovesradio]

Hi all, as far as I know in Scotland protocol is tamoxifen pre menopause and letrozole or similar aromatise inhibitor post menopause. It's a bit academic though as tamoxifen likely to trigger menopause anyway! Both for 5 years at present. For lerozole you get bone density scan at start and end of treatment as it takes the oestrogen from your bones. Alendroic acid once a week, before food, with 200ml fluid in one go, wait 30 mins before eating. That's the biggest hassle of them all. Also have been given calcium tablets with Vit D (AdCal) to support bones.

[Annie69 in reply to lovesradio]

Hello lovesradio. (so do I, by the way, mostly radio 4 plays)

I have been on AdCal and Alendronic Acid anyway because of rheumatoid arthritis. It really is a hassle taking the Alendronic Acid.

May I ask: did you have a reconstruction and how did it go. Sorry, don't mean to ask personal questions. My BC nurse keeps phoning to ask which "Treatment Plan" I want to take and I don't know enough yet.

Ann xx

[Cathy777 in reply to Annie69]

Me too...radio 4 plays. The Muse recently which was good.

[Annie69 in reply to Cathy777]

Hi Cathy.

I missed The Muse. Was it a while ago? I listen on my computer when I can't sleep. I will look it up and listen if it's still available.

Ann x

PS. I am in Devon.

[Cathy777 in reply to Annie69]

No just recent. Its still available on the radio 4 pod thing. Its ten 15 episodes. I really liked it.

[Cathy777 in reply to Cathy777]

Oh lucky you in Devon! I have happy memories of childhood holidays there. Paignton I think was one of them. Years ago!

[Cathy777 in reply to Cathy777]

Ten 15 minute episodes sorry

[Cathy777 in reply to Annie69]

I have a smart phone and can plug ear pieces in and listen if I can't sleep. Not so cumbersome.

[Annie69 in reply to Cathy777]

I haven't got a smart phone, have an ancient (5 yrs) not very smart one, but does everything I need - photos and stuff but I haven't connected the internet, am thinking of dragging myself into the 21st century and getting a smart phone, something simple - just phone calls, texts and radio plays. Haha.

Ann x

[Cathy777 in reply to Annie69]

I am a technophobe and half blind so my smart phone with 6" screen is great. I was using a tesco hudle before that. I never use my laptop now. Come on get on the internet! Mine is virgin and its quite reasonable. I like your 'not so smart' quip!

[Annie69 in reply to Cathy777]

Hello again.

I am on the internet, just not my phone. I had a tablet but gave it to a grandson. Actually, in this part of the Great Natural Wilderness the speed is so bad that sometimes I might as well not be on the internet.

I am a Virgin phone customer as well, I like them very much. I think I could get a phone (I quite like Samsung) and all the services I already use for the same price as just the service. They never tell you you could do it cheaper, do they?

However, you have prompted me to phone them tomorrow and see what I can get for what I pay now.

What is the matter with your eyes, if you don't mind me asking? I have macular degeneration but it hasn't deteriorated much. Are you sure we are not twins separated at birth?

Ann x

[Cathy777 in reply to Annie69]

Oh yes you must phone virgin tomorrow. I like them. I use a Vodafone phone I got on eBay but use virgin as my provider.

I was born with a lazy left eye and had operation when I was about 7 but I have been left with barely and sight in it. My right eye is not fantastic but it is my only goodish one. My lenses are so thick if I didn't pay to have them thinned down they would be too heavy for me to carry. I have the heaviest prescription there is. How does yours affect you? I have the start of a cataract now...sure its due to RA meds

[Cathy777 in reply to Annie69]

BTW virgin have fibro optics(?) Which is much faster now.

Maybe we are twins separated at birth! That would be fun!

[Cathy777 in reply to Annie69]

Nudge nudge phone Virgin

[Cathy777 in reply to Annie69]

I dont know if you are interested but I had my first breast cancer over 30 years ago when I was very young. I was told in 2010 I did not need to carry on having annual checks as it was unlikely to come back. Within a couple of months of being discharged it came back with a vengeance! How ironic. The lop sided look was one I lived with for years but as I was very small it wasn't so bad. Where are you at now with treatment and surgery? Sorry if you have told me before.

[Annie69 in reply to Cathy777]

Hi Cathy.

I stayed up and listened to The Muse last night. Excellent. Thanks for the tip. I sometimes listen and play Freecel at the same time. Keeps the conscious and the subconscious brain alert at the same time, ie. nowhere left for cancer worries to creep in.

That must have been a dreadful experience for you at a young age. What awful bad luck. You are very brave.

I was diagnosed (given the news) on 8th July. So two weeks ago today, is that? Sorry, I have fluffy brain syndrome, also known on this site as chemo brain, except I've only been on Letrozole for a week.

So I have the op, probably in September, and the radiation to look forward to. I'm expecting a wide incision thing (haven't got the proper terms in my mind yet) but he says he will know when he sees what the Letrozole has achieved.

My family are great, we all have a laugh together, except my daughter in law who comes round with her children to watch me die. Not really - she wasn't brought up in a laughing home, not her fault.

Let me know if there are any good plays I might miss. Oh, I haven't phoned Virgin yet. Just remembered!

Keep well. Annx

[Cathy777 in reply to Annie69]

That sounds like they think the tumour could be shrunk or even killed off with Letrozole. I have heard that is done. Let's hope it helps. You sound very calm about it. I think most illnesses are caused by the immune systems not working correctly. Heard it somewhere.

I am glad you enjoyed the Muse! I will tip you off if anything catches my fancy but I am a bit picky with what appeals to me. I am listening to a daily thing at the moment about the Cold War and events that occurred during it. Interesting.

Glad your family are a jovial lot. Laughter is so therapeutic. My family were/are quite dysfunctional but I always have a good laugh with my sister who lives in Italy. She just called today. I make jokes about my mastectomy and illness in general and it lightens things I think.

Oh by the way I was addicted to freecell once. Now I play an online game called Stacko and am totally obsessed for two years now. I play with people all over the world and have have brief chats about our games. Its a word game. I am obsessed with words. As you can see by the length of this text!

Take care

X

[Annie69 in reply to Cathy777]

Hi Cathy.

Thanks, I will have a look at Stacko. I am also obsessed with words.

Keep well.x

[Cathy777 in reply to Annie69]

Oh just to say I just started listening to a daily thing about van Gogh and what actually happened at the time he cut his ear off!

[Annie69 in reply to Cathy777]

Hi Cathy.

Missed the van Gogh ear thing. Will find it now - could do with a break, a cuppa and a biscuit.

Cheers, Annie x

[lovesradio in reply to Annie69]

I'm a radio 2 girl!! No worries re personal questions, they are the route to answers here. I didn't have a recon as I couldn't face the thought of more surgery after two lumpectomies and then mastectomy as 'no clear margin' could be found. My breast surgeon was, and still is, quite keen to offer me a recon but I am a happy prosthesis wearer and have had no problems.

[Annie69 in reply to lovesradio]

I like Steve Wright in the Afternoon, love the Old Lady and the Elvis.

I haven't thought of prosthesis. Thanks, I'll give that some thought.

Annx