Hi
I’ve been reading posts long enough to realise what a wide range of treatments are available, but I was wondering if there is anyone who is, or has been, in the same situation as me. I’ve been taking anastrozole for six months and coping quite well with no unmanageable S/E’s. I’ve had to stop taking it, though, because another primary tumour had developed in my remaining breast. The consultant said there was no point at all in putting me on Tamoxifen (something to do with not being positive for progesterone) so I’ll need to take exemestane for five years. I don’t want to blame exemestane unfairly but since I’ve been taking it I’ve felt really awful. I take a tablet with my breakfast but I still have waves of nausea during the day and I feel stiff and achey. In addition to that I’m so anxious and miserable all the time - I’ve got a few family problems but I’ve coped with worse in the past without succumbing to such gloom and despair. I’ve only been taking it for 3 weeks so I hope things will improve. I don’t want to complain about S/Es to my consultant as perhaps taking these tablets is my best hope of preventing a recurrence.
Hi Likeslilac,
My story is very simular to yours in that i also had a new primary tumour develope in my opposite breast whilst taking Anastrozole, before taking anastrozole for my first primary, i first took Tamoxifen then Aromasin (exemestane) although i found aromasin not too bad the worse SEs for me was very bad Odema in my feet which meant eventualy i had to switch to anastrozole as i couldnt even get my shoes on!.
I was interested to read that your oncologist has said that you cannot take Tamoxifen because you are PR neg? i dont realy understand why he has said that as i am taking Tamoxifen again since my new primary developed and although im Er positive 6/8 i am also Pr Neg like you. Im not sure your onc is correct in telling you you cannot take Tamoxifen but if he is i am slightly worried now !!
Hopefully someone else will come alomng soon who may be able to enlighten us more , In the meantime am realy sorry to hear that your feeling so rough on the exemestane, i think there is another hormone therapy (Famara )which you may be able to try if your symptoms dont improve after a while and your onc insists you cant have Tamoxifen. But i should have another word with him and ask what his reasons are for not perscribing the Tamoxifen as ive never heard of this before.
Good luck and all the best to you
Linda x
Hi Cornish Girl
I want to find out more about Tamoxifen as it wasn’t my oncologist who told me I couldn’t take it but my surgeon’s colleague who I saw as a follow up to my mastectomy. I’d assumed they had discussed my case but I’m seeing the oncologist on the 17th so perhaps he can clarify things for me. Sorry I was moaning a bit earlier; I’ve got a big decision to make tomorrow about whether or not to take voluntary retirement/early retirement from work and I don’t want my decision to be influenced too much by how bad I feel right now.
Hi again Likeslilac, Your wernt moaning at all lol, it will be good to find out what your onc says re the Tamox i shall ask too when im at the breast clinic on weds, i suspect because we are both Pr neg then maybe we wont get quite so much benifit as if we were both er and pr + but i should have thought that would be true for all hormone therapies though i may be wrong! . Hopefully your SEs on exemestane will settle down for you when youve been on them for a few more weeks, often SEs are worse in the begining then settles as time gos by so fingers croseed for you. Good luck with your decision re early retirement ,it must be a difficult decision but i think BC makes us reasess our life prorities sometimes so am sure whatever you decide will be the right decision for you.
Good luck with everything, and please let me know what your onc says regarding the Tamox , il also let you know if i can find out anymore too from my clinic.
Linda x
Hello Likeslilac,
I’m also interested to hear what your oncologist has to say. I had an early menopause, and am at high risk of osteoporosis, so my oncologist is talking of Tamoixfen when I finish chemo and surgery. Fifty percent of the cells they tested were weakly Er+, brut the lump is Pr-.
This is my second cancer. Had it 20 years ago, but no tamoxifen as it was hormone negative, so all new to me.
Margaret
Hi Linda and Margaret
I’ll let you know how I get on when I see the oncologist. By the way I decided to stay on at work and feel better now the decision’s made. Pauline xx
Well, I saw the onc registrar on Thursday and she says it’s got nothing to do with being PR-. At first she said I couldn’t take Tamoxifen because I’m post menopausal but when I said my neighbour aged 65 takes it, she said it is because I’m high risk.
Aromasin apparently is generally well tolerated, but it caused me real problems - appetite loss, weight loss , really bad joints, tired - I really wasn’t a happy bunny. You don’t sound to have tried letrozole - I went onto tamoxifen as I was taking Arimidex when my secondaries occurred so it wasn’t working, and when that failed I side steped letrozole for some reason I’m not sure of and went straight to capcitebine chemo. I think I was in such shock at the secs having progressed so quickly on tamox I didn’t question letrozole, and I’m coping so well on Cap I’m not arguing right now!!
Realise this doesn’t answer your tamox Q buit might help explain your aromasin reaction.
Nina
I wonder if oncologists sometimes just have different preferences, treatments and opinions seems to vary so much accross different hospitals , im not sure why i was put back on Tamoxifen (though i did ask and have been told its suitable for me) im also post menopausal and high risk too , grade 3 tumour ,LVI positve and HER2+++ . I did think in the begining that i may be offered Famara aswell, as felt at the time that the 3 hormone therapies that id already been on in the last 5 yrs hadnt worked for me, but possibly as i didnt have a recurrence, but a new primary albeit whilst still taking anastrozole. the new primary was a completely different cancer and was HER2+++ which my first one wasnt.
Realy hope any SEs from Aromasin settle down for you soon Likeslilac, but if they dont get better with time like Nina says you could always ask to try letrozole (Famara) .
Good Luck and Best Wishes to you all.
Linda x
Hi, LikesLilac, I started taking Exemestane 2 weeks ago having been taken off Tamoxifen last April due to suspected side effects (serious lung problems). Diagnosed in Sept 11, aged 45, early primary, nodes unaffected, but strongly ER. Spared chemo by the skin of my teeth. Have been on Zoladex for over a year and apart from the sweats which are just about tolerable it’s the aching joints that are really getting to me. have now got sciatic pain and pain in shoulder joint and feel twice my age. I can cope with the sweats but this in intolerable. I havent had any nausea but sympathise with you. Osteopaths and massage therapists won’t touch me until I get letter of ok from my Onc so am stuck with self help only.
The point of my rant is that Tamoxifen and Exemestane work in completely different ways, Tamoxifen is the first course of treatment sometimes followed by Exemestane or other Aromatase Inhibitors depending on whether the cancer is primary or secondary, age, etc etc. I think you need to understand how the drugs work before making a decision about whether to take it Or not. My breast consultant did say to me recently that Exemestane “has the edge” on Tamoxifen, don’t know if that helps?
Quality of life is an important issue here especially when side effects are concerned. My cancer was removed and my prognosis good, the hormone treatment is preventative, I’m also having an Opherectomy in the Spring to release me from the prospect of another 4 years of Zoladex bring it on, the jabs are awful. But if the joint and back pain is the price I pay for being “protected” against a recurrence then I have a big decision to make. i have had far more problems with side effects than with the cancer itself. I know I shouldn’t complain as others aren’t so lucky but when the treatment makes you so ill you do wonder what’s going on?
I am so grateful I have someone to talk to when I’m on on here. Someone on one of these forums said something about medics thinking we have the IQ of a baked potato which I thought amusing at the time, but after my last appointment I didn’t think it funny at all. The registrar had such a patronizing attitude and obviously couldn’t wait to get rid of me and I got quite upset. That’s why my last post was so terse! I usually go to appointments myself and hopefully am articulate enough but this is one time I really wish I’d had my daughter with me. Thank you all for your comments and advice. I think the SE’s are settling down a bit so I’ll see how it goes. Pauline x
Hi everyone,
I have no secondaries but I am 65 and prefer Tamoxifen. I would just like to add that I had Arimidex for a year and had to stop because of serious hand problems, or at least I thought I had to stop rather than have surgery. I can’t say how long it was before those problems developed. I am now on exemestane after an interval of Taxmoxifen. I had quite serious hot flushes at first but they have completely stopped now (11 months on). The hand problems come a bit but go again. I have tingling/pins and needles in my hands. The back pain I mentioned in another thread has improved after a week and seems unrelated. At all events I find exemestane much less trouble than Arimidex. But everyone has different experiences.
My oncologist preferred Tamoxifen. He said the AIs have a marginally better record for recurrence, but the life span is no better. He thinks it may be because people on AIs tend to get less exercise and have more problems with heart, blood pressure etc.
I think proberly why some oncologists still seem to favor Tamoxifen is because it has been around for a very long time , well over 40yrs so already has a very good track record, AIs on the other hand are still relitively new , though studies have shown a marginally improved risk of non reocurrence if you switch from tamox to an AI after 2-3 yrs, like Zeppa says there is not any difference in overall survival , also as AIs have only been around for a relitively short time, any possible long term effects have not yet been been established .
All the hormone therapies work in a slightly different way as Dorsetgirl says above, Tamoxifen which can be perscribes for both pre or post menopausal women, works by sitting in the breast cell receptors which then prevents the estrogen from binding to the cancer cells, so blocks proliferation.
(Aromasin) Exemestane, works slightly differently, and is known as an irriversible steroidal aromatase inactivator, it is only suitable for post menopausal women, it works by preventing the action of an enzyme in the body called the aromatase enzyme, In postmenopausal women ,aromatase enzymes makes most of the estrogen in the body so by blocking these enzymes, Aromasin helps to decrease the amount of estrogen in the body.
(Anastrozole) Arimadex, and Letrozole (Famara) work in a simular way but are a non steriodal aromatase inhibitor, and are only again suitable for post menopausal women , they too work by preventing the action of an enzyme in the body called the aromatase enzyme, so help to decrease the amount of oestrogen in the body.
For me i am quite happy at the moment to stay on the Tamoxifen ,as SEs wise (for me anyway) these tabs have been far better, my main SEs are blooming cramp in my legs and feet ,but other than that nothing else of any significance.
Linda x
Hi, I just wanted to add to the confusion that I am on Exemestane and am PRE menopausal. I’m on it because had possible side effects from Tamoxifen, lung inflammation and all over rash. So it can be given to re menopausal women as long as they are on Zoladex as well ( which puts you into a post menopausal state). finding all this soooo confusing. Wish this would all go away at the moment, had BOOP (a type of pneumonia) all of last year, still waiting for yet another x ray to confirm that the shadow has at long last gone from my lung, then I can get on with the Opherectomy and stop the Zoladex which is doing my head in at the moment. Sorry, minor rant here, still got sciatica, still waiting for permission from my Onc to have some physio.
I am on Exemestane since last July. Was ok at first now havw bad pain in myleft
knee paracetamol dont do much good. Anyone else having joint probs
Yes, my experience is similar to yours - pain in lower back, comes and goes. I had an x-ray and they did find a slightly misaligned disk, but I suspected I’ve had that for a couple of years without pain. I have only taken paracetamol twice (pain since Dec 26) and it helped. I was told to get ibuprofen next. Exercise has helped. I am planning to complete the 5 years of Tam followed by exemestane in September.
I’ve persevered with exemestane for 3 months now and if things don’t get much worse I think I’ll be all right. The hot flushes have stopped and so has the nausea. I get pain in my back but maybe it’s related to cysts on my spine which I didn’t even know I’d got until I had a MRI scan. I’m bent over like a very old lady when I get up in the morning but I’m OK once I get moving. If I stay sitting down too long at my desk at work I find I’ve seized up. I used to walk everwhere but now I can’t go far without my legs and feet hurting. A group of us from work are planning to do an hour’s swimming twice a week early in the morning before work. Not too long ago I couldn’t have faced doing that so I’m quite pleased I feel able to do it. I really hope I can get into a routine of swimming as I’m sure it will help.
I am reassured by these comments, but having been ok on exestame for 2 months a brand change caused all sorts of side effects, including loss of my sense of smell…anyone heard of this? Taken off it and given arimidex 3 weeks in I feel like I have had another round of chemo…lethargic, achy,fed up etc. not sure what to do next. Have also tried letrozole and reacted severely to it (1 week only). Onc check up next week, don’t know whether to stop or put up with. The latest side effects. Aargh
Hi there. I too am taking Exemestane and struggling with the SE’S. No nausea, but Aching from neck and shoulders to feet! Hands cramping up. Awful. Had Arimidex in 2006 and after the first couple of weeks was ok, no chemo luckily. They stopped it after 5 years and had a further tumour removed under arm in March this year followed by chemo. Just started to feel better after chemo then started Exemestane. Don’t know where to go from here. Feel 101 years old and grumpy!
Hi, I was originally given Anastrozole, took it for 18 months, was taken off them for 18 months this, then I was taking nothing at all. Until this August when I was given Exemestane as recommended by the Breast nurse I usually contact, as I found out from anaesthetist who I saw in March for my knee op that my original consultant had retired through ill health last December!!! So I was basically lost in the system until this summer! Anyway, when I wasn’t taking any hormone meds, I was feeling quite poorly most of the time, picking up viruses and struggling with fatigue, bone pain, PN in my feet, etc!! Since starting the Exemestane 4 months ago, I am worse than I have ever been. I wondered whether the Exemestane is partly to blame, but 4 months is quite a long time for the all over pain to kick in, or so I would have thought. I’m seeing my new consultant in January so I guess I will have a lot to discuss with him!! Like I was saying on a FB forum (Breast Cancer Buddies has been a Godsend!) never unwell (just Under active Thyroid which never bothered me) until diagnosis and treatment, and even worse now a few years after. My biggest worry is what if there’s something going wrong inside Andy I don’t know it? Apart from the yearly mammo, how does anyone know what’s going on elsewhere? Another question for him at my appt!
Cheers, Michele x?