Forum Discussion
Marakesh
8 years agoMember
Aromatase inhibitors
I’ve started reading about this treatment as it has been recommended for me . One article firmly stated chocolate , alcohol and coffee were not recommended. Is that what you all understand?? I mean that seems quite drastic if it’s for ten years 😳
Do you think say a wine once a week would be ok? And I just love my one fresh brewed coffee in the morning. What are you doing if you are on this treatment ? I’d really love to hear your advice . Xx
Do you think say a wine once a week would be ok? And I just love my one fresh brewed coffee in the morning. What are you doing if you are on this treatment ? I’d really love to hear your advice . Xx
54 Replies
- SirrahMember@arpie thanks so much for your extensive reply. I will certainly give Letrozole a go if my oncologist can't convince me I wouldn't b better off on Exemestane especially with regard to my high cholesterol. Hope u have a great Christmas, I will b on NSW Nth Coast for part of it( my childhood and home near Port Macquarie).
- arpieMember@Sirrah - Initially my breast surgeon said i would be onTamoxifen, so assumed that was what I would go onto! (Shows how much THEY know about hormone treatment!) Tamoxifen has been around for decades & is one of the best known hormone treatment tablets!
However - From my first visit to the Onc - Tamoxifen was never suggested, so I asked her why?
I took notes! (Please correct me if I've got this wrong, ladies!)
Oestrogen is produced in the ovaries until menopause, and then post menopause, it is continued to be produced by a fat hormone (aromatase) to keep the level 'up' - but it should by then be a lesser level than in Pre Menopausal women.
Tamoxifen is a Selective Oestrogen Receptor Modulator. If the pathology showed the cancer was Oestrogen Positive - the oestrogen is feeding the cancer in the breast & it is blocked by the Tamoxifen - often given to PRE Menopausal women or those forced into menopause by chemo as their levels are still quite high in the body.
AIs (Aromatase inhibitor - i.e. the hormone that is producing oestrogen from the fat tissue) eg, Femara, Arimidex, Letrozole, Anastrazole - blocks that chemical reaction in the fat - so is often given to POST menopausal women.
Different Hormone Tablets affect different women differently! Some have massive side effects whilst others have virtually none. I don't think they know exactly why this is so - tho research into it should be vital - to try & determine which one will suit which woman/man better right from the start of treatment. Up til now, I think it is trial & error, to be honest.
So I started on Letrozole. I already have had quite severe arthritis for 20 years (and I have a reasonable tolerance of pain level i.e. I am used to the pain and don't take many tablets for it!) But within a week of being on Letrozole, I was in massive pain & taking daily anti-inflam tablets - my whole body, but specifically my feet and hands. They just ached & hurt 24/7. My body just didn't want to work properly - getting out of bed or a chair was painful & awkward - and also made me more likely to have a fall. I put up with it for 6 weeks - and at my Onc Review - told her of my agony. She immediately suggested I try Exemestane which I started the next day. When I saw her again 8 weeks later, she was happy for me to stay on it, as most of the bad side effects I was having from Letrozole had virtually stopped.
On the flip side - some others on the forum have NO real side effects from Letrozole ..... and it is considered one of the best oestrogen blockers, so if it is suggested that you try it - DON'T BE AFRAID TO GIVE IT A GO!! It may be perfect for YOU!
All the best for your continued treatment xx - SirrahMember@arpie did your Oncol explain why he started u on Letrozole, then was happy to switch u to Exemestane? It seems that happens a lot from reading comments on this site!
- MarakeshMember@Sister, I also have those over full days, when I’d much rather just crawl into bed with good coffee, chocolates and the remote control for the telly! But I honestly believe in another few months I will be fitter and take things more in my stride . Good tip to pick up pizza though 😜.
Having a Diep scar across my abdomen I’m still finding picking things up off the floor a bit of a challenge. I’m not even sure how long I need to wait before getting in a pool and whether I can wear my prosthesis in chlorine . I’ll sort it all out before January . 😊 - SisterMemberI was worried about that, too @Marakesh. I went back to work this term and started Encore on a Friday afternoon/evening. I am so tired by the end of the week but I still look forward to the pool. I then race around picking the kids up plus pizza and finally get home around 7:30pm.
- MarakeshMemberThanks @Romla
Sometimes I think I can barely get through my working week, so adding anything extra on a “school night” seems impossible. But I’ve done two full weeks at work now and second week was easier than the first so I’m sure my energy levels will improve anyway and week three will be even better. I love my job and I’m not giving it up.
I’m in no hurray to commence phase two of the reconstruction either . I just want some “normal” life back first. Everyone around me says I’m doing so well and “look great” but we all know that the underlying experience of BC is draining and energy sapping ! ....Plus work colleagues don’t get to see me with my bra off either. 🙄 - RomlaMember@Marakesh Good to hear .I thought the same at the outset .I found it very good - also was a relaxant enabling a good night’s sleep.
- MarakeshMemberHi @AllyJay your experience and many others I’ve read indicate hydro is worth pursuing . I wasn’t a big fan of water aerobics that I tried years ago but assume the pace will be a bit more doable 😂😂 . Also my husband had convinced me to enrol in the two hour Thursday night program with ywca. Maybe it will improve my tiredness ? I’ll let you know how I go . I think the program is only 8 weeks .
- AllyJayMemberHi there @Marakesh,,,I live in Sydney and my local hospital has a hydrotherapy pool. However, you can only have one block of eight half hour sessions every six months. The time block for me was also difficult, and for just half an hour, it seemed I'd hardly gotten wet, and it was time to get out. My local council has an excellent aquatic centre and one of the indoor pools has a roped off double lane reserved for walking and gentle exercise. So no enthusiastic swimmers doing laps and running me over. I can go whenever I want (during opening hours) and spend as long as I want there. It costs me $8,00 entrance, unlimited time. I have found it to be of great benefit and my core strength has improved +++. Also my range of movement in my shoulders is far greater whilst up to my chin in the warm water.
- MarakeshMemberThat definitely fits with what the physio said . She said the exercise was important too. It’s on a Thursday night here so need to work the next day so scheduling isn’t great for me . But there must be other hydrotherapy classes I can attend so I’ll look into it . Thanks @Romla 😊