Forum Discussion
Kim_R
9 years agoMember
Arimidex verses Tamoxifen who wins?
My oncologist today informed me that he is going to change me from tamoxifen to arimidex once my menopausal status is known. So I have just read the side effect info and it sounds like hell! What are others experiences of this drug? Tamoxifen has not been too bad ( or am I just use to it!?) bad feet in the morning and dodgy joints, confusion, heat and weak eyes but compared to osteoporosis and high cholesterol it is like a walk in the park. Feeling disparate again, help! I tell the doctor I am going sailing ( hard core sailing the blue water kind) and can not afford to brake bones out at sea and he looks at me blankly as if I am joking with him. What does he expect everyone to stay safely at home watching day time TV. I have nothing to lose and want to feel the thrill of adventure, to live. I am not content with just a good 5 year survival rate! we all deserve 50 plus year survival. Doc today said 10 years is a long time not from where I am standing it is not. Maybe I need another doctor but that is another discussion .
14 Replies
- Kim_RMemberOh dear @"Harley B" you haven't had a good time! I am glad things have started to improve. I really do not know what to think about arimidex but my oncologist gave me a reprieve until November. I haven't got time for more pain! So I am staying on Tamoxifen until then better the devil you know! Really it is not too bad only dodgy wobbly feet in the morning and I get a bit hot so can't complain.
- HarleeMemberHi deeney thanks so much for the information about the Verve program. I have just signed up. I wish I had known about it from the beginning - my first year on Arimidex was a nightmare. My doctors implied that it wouldn't be any different to Tamoxifen (which I had coped with very well) but the joint pain, weight gain and depression were enough to make me consider stopping it. Luckily I persevered and I am now feeling 100%! I am back exercising, my depression is gone, it's weeks since I took any pain killers for my joints and the excess weight is not as excessive as it was last year!
The key for me is the exercise - but it is so hard when your body aches so much.
Good luck to those ladies just starting out. - deeneyMembercheers kim it is a normal process to change to arimidex after menopause so yes its no real biggy just another process to moving forward but do make sure you talk to your oncologist if you start noticing dryness they can prescribe "stuff" for vaginal dryness instead of thinking you can just use lubricant. The prescription has a medication base that is more helpful & i think kinder on your body if you require it. (well that was embarrassing ;)) enjoy ur summer sailing !!
- iserbrownMemberHi Kim I'm in the same predicament due to change to Arimidex. Side effects become part of the norm or at least that is my way of dealing with it. I guess I could say Tamoxifen has prepared me for Arimidex. Good luck and take care
- Kim_RMember@deeney thank you so much for your reply, I will get that magazine and give arimidex a try. I feel a little bit more light hearted about it now but your experience was pretty horrible. I know they all have side effects but I am coping with Tamoxifen verily well and it was a shock when told I should change. Fingers crossed my luck has to turn sometime! No I am not in the caliber of Sydney to Hobart but I am hoping to get a crewing position in Port Stephen Race week in April. And migrate north come winter. All the best.
- deeneyMemberhi KIm & ha smoking a joint would be so much easier ;) but no im not a dope smoker I did however take arimidex for 1 yr i commenced it as soon as i finished chemo but still had another 8 months of herceptin treatment to go. My opinion was i was happier on arimidex but i was post menopausal(&from all that i had read & been told by my oncologist & Professor) although all the hot flushes etc came back when chemo started. I became aware that all my bones & joints were just not stopping from being painful but were getting worse this included swelling in the joints etc & my weight gain went through the roof i gained 25kilos & for a 'skinny' person i thought the weight gain was adding to the bone pain. I continually told all my health care team (chemo dr, chemo nurses gp oncologist & prof)& felt like a winger but it got so bad i really could not walk no one put it down to the arimidex so i got a referral back to my rheumatologist (other health issue but not arthritis related)As soon as i walked in the door he said ur on arimidex arent you! his advice was to get off it but go back to oncologist & discuss the options.I also didnt mention arimidex totally dried out my whole body no tears, no watery eyes no runny noses etc etc i also had really bad stomach pains every time i ate(this was investigated but everything is normal)& is an undiagnosed problem i even tried the FODMAP diet but that was also undetermined.My oncologist said usually the sideeffects happen imediately so that was why he didnt really think arimidex was the problem although i/ we had been joking about the dryness on the prior visits. So i commenced tamoxifen & have been on that for almost 1yr it does make me "hot flush" more but hey u just get on with it. I have 8 more yrs to go on it, i was going to be on the arimidex for ten yrs as well. From what i understand TEN YEARS on it gives a better statistical outcome. I lost 20kilos in the first 5 weeks off the arimidex with the combination of the FODMAP diet. I was very relieved about that plus i had to have the rest of my breast recon surgery which was so good having the weight off prior to the surgery (all my ducks lined up in a row ;)). My oncologist was quiet surprised as well. My blood levels all became normal in an eight week period after ceasing the arimidex too(i forgot to mention my iron levels were non existent i was also as tired as i was dry & had horrendous bruising all over me)The iron depletion was ??because of the arimidex but they were uncertain i have not had any iron issues since.
I have spoken to a few woman who have not had any trouble on arimidex at all & they have been on it for a period of yrs. The Verve company that make/supply arimidex have a support line & a really great magazine called Verve (supporting woman on Arimidex)so subscribe u have to keep the tab tops from your empty Arimidex boxes, but make contact im sure they will send you a magazine prior ph 1800889860 (8.00 to 5.30pm aest).I loved the magazine highly recomend it!!
To sum up i would have preferred to be on arimidex but it was not for me unfortunately (i think we need to try these things but give yourself maybe a 4 month time span & review how you feel within yourself & make your decision of "oh it seems fine" or "i'm not sure might give it a bit more time" but dont let it go on for 12 months like i did all that kind of pain & discomfort are not normal.(i still worry that i should be back on it)
Yes you need to take all those supplements!! I have to have bondart infusion once a yr (part of chemo side effect)Liquid fish oil (cant stand it so take capsules) VitD with calcium plus i take vitc & magnesium the later 2 of my own choosing. Some doctors say we over supplement i know but the magnesium helps in all kinds of ways i reckon but do ur own research!
I was diagnosed in Feb2014 age 52 stage3 grade 3 ductal & lobular 3 lumps (1 benign)plus 4 lymph nodes. Post surgery pathology showed i did not have clear margins so i was very happy to have a mastectomy.
So im not quiet the same senario as u being post menopausal but maybe you will feel more confident giving it a go especially as you are active get the Verve mag give it a try remember some people react to tamoxifen the way i did to arimidex everything has side effects (if you are on tamoxifen you have to make sure you get your eyes checked once a year plus you also have to have a pap smear once a year, 2 very important things to know & remember)
wishing you well goodluck with your sailing are you in this yrs Sydney to Hobart i love watching them come up the Derwent!!;) - DeanneMemberYes it is different for everyone I think. The idea of taking more drugs was a big concern for me too. I rarely even took panadol before breast cancer. So far I have found a way around that with exercise and a few vitamins and minerals. Curcumin is a natural anti-inflammatory made from turmeric and I feel happy with that. 12 months on Femara and no other drugs yet, fingers crossed!
- Kim_RMemberThank you ladies for sharing your experiences, it seems to be a total personal journey no 2 people will experience the same side effects. All I or any of us can do is be guided by our health professionals and cross our fingers. It was just that taking Arimidex seems to lead to taking so many other drugs. Smoking pot as a teenager is light weight compared to the drugs you take as you age with cancer!
- DeanneMemberHi Kim,
I was on Tamoxifen for 2 years before having my ovaries removed and changing to Femara (Letrozole). On Tamoxifen I had an excellent quality of life and I must admit that it is not as good or easy on Femara. I had also heard and read all the scarey things about aromatise inhibitors. I lead a very active life and hoped that exercise would counteract the aches and pains and bone density issues.
Unfortunately that was not completely the case. I have now been on Femara for just over 12 months. The joint pain hit with a bang at the one month mark but improved hugely by 6 months. At the 3 month mark I began training in earnest for a trek in the Himalayas (to Everest Base Camp). The more hills I hiked the less I hurt. I succeeded in my goal and felt terrific.
BUT one month later I found out, despite my efforts, my bone density had deteriorated. So I have now taken up weightlifting with an exercise physiologist designed program to stop the decline. I hope that this will work for me.
I keep working on finding things that will give me the best quality of life on this drug. I know that it is much more effective against recurrence for someone in my position (high chance of recurrence unfortunately) so I have to find ways of living well with it. Just this week I have begun taking curcumin capsules morning and night (I have checked with my doctors that this is ok for me). The improvement in joint pain is quite remarkable so far. Curcumin is also effective in reducing levels of bad cholesterol. So it will hopefully be a win win for me with this.
In my experience the pain side effects do ease with a little time and there are things you can do to counteract most of the other side effects. Always remember that we are individuals and someone else's experience does not necessarily forecast yours. I have found this network and the ladies on here a wealth of information on how to get around most problems. Good luck with it. :) - Lisa_BCNAMemberHi Kim,
It's Lisa from the Policy Team. I just wanted to jump in and send you a link to our Hormone Therapy booklet, which provides information about the different types of hormone therapies, including Arimidex and the other aromatase inhibitors. The booklet includes tips and strategies from other women about how they managed certain side effects.
It can also be really helpful to talk to your doctor about side effects you do experience, as there may be options to lessen these and there are also other hormone therapies which can potentially be tried.
If you want to order a free hard copy version of the booklet, you can order it on our website or call the Services Team on 1800 500 258.
Warm regards,
Lisa