Ive just been changed over to Aromasin/exemestane, after being on Tamoxifen for 16 months and suffering a lot from the side effects. Since I’ve been on Aromasin, I’ve suffered a few bouts of nausea in the mornings and a gippy tummy. I really feel out of sorts! I just wondered if any one else has has this problem
Before BC and my hysterectomy I always considered myself healthy most of the time. But now I feel I’ve aged 20 years. I feel below par all the time! I’m seriously thinking of going on antidepressants, as all this, plus other problems, has really pulled me down. I’m crying as I write this. I really need a big hug from all you lovely ladies out there.
My ‘best friend’ of 25years who was very supportive to start with, now avoids me like the plague. And we live in the same street! I haven’t seen her since May. My offers to forget our differences and get together for a cuppa have been thrown back in my face. So its obvious she wants nothing to do with me. I feel so hurt. We’ve texted each other a few times and then she stops
I’m really sorry for whinging like this as a lot of you ladies have worse problems to contend with,
Hi Cynthia, how awful that your friend can’t cope with her own feelings, well, we can cope here, and here’s my hug to you xxxxxxxxxx i went on anti-depressents, i am now weaning myself off them,(after just over a month of starting them) they really haven’t mixed well with the zoladex, which i am finding hard to cope with, i am due to have my ovaries out soon, and will be going on aromasin, or something simillar, its awful having to feel so old in the body before our time, i think with me its a case of my body just isn’t used to this, not sure if it ever will be, but besides refusing treatment i don’t think there is much we can do about it. can’t really advise you on your friend, i haven’t seen a lot of people for a while now, i think they just get a bit scared.
Reading your comments about Aromasin/exemestane is a bit of a mirror image to my own experiences. I took Tamoxifen for 16 months then had my ovaries out as my BC was 100% estrogen positive and we have family history including ovarian cancer. Thought it would be the best thing to go onto Aromasin but after 4 months I had my annual DEXA scan. Real shocker as I have lost 6% of bone density in my spine in one year! So decided to go back onto Tamoxifen. Also on the Aromasin I got and still have, very creaky bones. I also got very low and depressed and don’t seem to have any feelings, good, bad or indifferent. This is still the case now even with the Tamoxifen. I take supplements for my heart and bones and try to walk as much as possible. I feel old before my time, I am 55, and used to feel very alive and fit. There really seems to be no answer. Our bodies are completely deprived on oestrogen, in my case overnight, and I just don’t think they can cope as natures way is to loose it slowly. I too have been very tempted to give up all hormone treatments but am worried by the fear of recurrence. By the way Alison I too was on Zoladex and at least after the oopherectomy there was no more injections! - plus some peace of mind.
Hi Grace, i have to say, i haven’t had a problem with the injection, due my next one next friday so hoping they do the same as last time and give me a local!!! i get sick of going to the hospital, all i want to do at the moment is lick my wounds, but it seems even that isn’t allowed as we are expected to be so positive!!! yeah, i don’t think so! like you i am scared of a recurrence, especially as my sister has had both a neg and a pos cancer in each breast.
have you heard from your friend Cynthia? if you get really down, phone the help line on here, and its live chat tonight, its really good, i normally forget to come online for it, but theres some really good people on it.
Thanks for that hug Alison, I really needed it No, I haven’t heard nothing from my ‘friend’ I don’t know whats happened, but for some reason she just dosn’t want to see me at all. I think I will just have to accept our friendship has died a death, and move on!
Do you mind if I ask you what anti-depressants you were on. A few years ago I suffered depression and my doctor prescribed Cipramil, which were brillent and really helped me, but that was pre BC so now like you I don’t know if they’d react with the Aromasin. How did they affect you? Thanks also for info on live chat. I might take a peek later
Gracet I am suffering exactly the same as you. I’m also 55. but feel 75. I feel very low and keep crying. Things arn’t helped by other problems ongoing in my life at the moment. I feel things have deteriorated since I had a total hysterectomy, back in Febuary. like you I’m also certain that most of our problems on these anti cancer drugs is instant depletion of oestrogen, made worse by the hysterectomy Apparently even when your post menopausal you have some oestrogen in the body, but with these drugs its all completely wiped out!! And as my cancer was strongly oestrogen positive I have to keep taking them for at least 5 years. I have felt so run down with all the side effects. then there is the risk of raised cholestral which could lead to heart problems and liver function and also the increased risk of osteoporosis. I feel its like a choice between the Devil and the deep blue sea. I have seriously contemplated coming off them altogether and taking my chances! I wonder if its worth asking my Onc if I could come off the tablets for a couple of months to see if the symptoms are due to the tablets or the natural menopause. What do you ladies think?
hi Cynthia, i was on dosolupen, then propanolol, think i spelt that right! the first one didn’t agree because i have a natural high pressure behind my eyes, more fool me for not reading the info, would have saved a lot side effects!!! the second one, well, rather than decrease my hot sweats and flushes well, they actually increased them, so i have been off them and the zopliclone for three nights now, its not been pleasant, and i have had little sleep, but i can’t live the way they make me feel. i also cry most nights, i don’t want to, but i just can’t seem to help it, i am 45, no where near menopausal, i find it hard to believe that these side effects will ever go, even after getting my ovaries out (soon i hope) i know i will still have these side effects, but as i said, if the gyni refuses to remove them, well, i am going to take my chances and come off the hormone treatment, ok, i might get a recurrence but at least i will feel a lot better in myself, thats the stage i’m at now, and i only got dx on the 6th of june this year, but it feels like a life time away
Alison I really feel for you. It sounds like you are really going through the mill. Have you had to have chemo and rads? I was very lucky and only had to have rads. Its even worse at your age and not even started the menopause yet. Who’d be a woman??? I was diagnosed in January last year then I had another cancer scare in January this year so had to have a total hysterectomy in February. I had started the menopause before BC was diagnosed but only suffered hot flushes every now and then plus my periods were becoming irregular Now the flushes are constant and severe. I sometimes have to go outside as I feel claustrophobic! Like you I don’t sleep very well, which has been a problem since i started menopause. I am really tempted to come off the hormone drugs and take my chances, because of some of the serious life threatening side effects and what some of the other ladies have said, we are at risk of raised cholesterol and liver function, blood clots and osteoporosis, so like I said before It like a choice between the Devil and the deep blue sea.
I feel I ought to go on antidepressants as everything that has happened in the past year and a half plus other problems have suddenly caught up with me. Its not only the physical issues we have to cope with, with BC its the emotional as well.
I really appreciate this site, as we can talk to other ladies who’ve got this awful disease and their know exactly what we’re going through, as sometimes I feel really alone with no one to discuss my fears and worries with.
Alison I hope that you will feel a lot better soon. Also I don’t think the gyni can refuse to remove your ovaries, if your 100% certain that you want them out. Have another chat with him and tell him how you feel.
hi Cynthia, i am finding it quite hard to adjust to this, i have little faith in my gps, in fact, i won’t go anymore, so i am putting this poor gyni, who i haven’t met yet, but my onc has discussed this ovary business with him and he said he’d try to get them out before xmas, in fact i wouldn’t mind him taking my womb as well, as it would be one less useless bit of tackle to worry about, i didn’t have chemo or rads, so very lucky i hope there, but i do have what i think is a lump in my good side but this has been examined and i’ve been told it was nothing sinister, so thats an added worry as well, but i will get my surgeon to check that out when i see him in january. its a very lonely place having had bc, and i do think its only those of us who have been through it that really understand it. but i think my feelings are normal for what i’ve been through, its not even 4 months since i had my mastectomy and immediate recon, but i do hate what these drugs are doing to my body, you can always private message me if you want Cynthia, i try to get on every day, and i will always answer you
I can also sympathise with everyone on here. I am 46 now Dx when I was 44 so no where near menopause however after just 2 chemos was post menopausal. Yes I agree that since being on Exemestane my joints are painful and know exactly what some of you mean when you say that you have no feelings about anything. Sometimes I just feel empty and robotic.
However I have been on Exemestane since April after only being on Tamox for 9 months and can honestly say that as more and more time goes by the flushes get less and less and far less intense. I have never experienced any sickness feelings but was told that it was far better to take tablet after eating a main meal so I take mine at 8 o’clock every evening.
I also found that taking Tamox in the evening was better. I do have a better quality of life on this drug and although do feel much older than 46 would never consider coming off it as I would always wonder " what if " if I did get a reoccurence of BC.
I am 100% ER positive so have to rid my body of oestrogen as much as I can. I have just had 1st Bone density scan and am waiting for results to come back to see if I have Osteoporosis. I hope if you do decide to persevere with this drug it gets better for you. As I have said before I am happier on this drug and can feel " the fog" lifting more and more as each week goes by and will put up with the joint pain because that seems the lesser of the two evils for me.
Thanks so much to everyone for your contributions,
Its helpful to know others are in the same boat, although none of us wish we were in the boat to start with! Just want to say to han1989 that I wish you luck with your bone density scan. After 16 months of Tam. I decided to switch to Exemestane after my oopherectomy but then discovered I have osteoporosis with a huge bone loss in my spine after just one year. This MAY be due to Exe. as the bone loss is more with this drug than Tam. But, it could just be the whole business of being plunged straight into the menopause. As for the hot flushes, even though I am back on Tam, they are much reduced in number and I don’t now get any at night which I did in the beginning. I think your body adjusts over time whatever.
Cynthia, I too often think about giving up the Tamoxifen, but as you say Devil or Deep Blue Sea. I once took anti depressants before BC for 3 months with great effect so maybe you should give them a go. I would so like to get some emotions back into my body that I too am considering them, but the downside is its yet another drug to put into our poor bods! I usually find a couple of glasses of red wine can have the cheering up effect required
Hi Grace,
I did go along to the Docs last week and asked for antidepressants as I have been bogged down with so much c*** as well as the BC and hysterectomy, that I am finding it very hard to stay in a positive frame of mind. I am just going to take them for a short while to help me through things. The odd couple of glasses of vino certainly do help, but only temporarily!
The anti depressants I am on are very good, They are mild ones. I took them a few years ago, when I was severely depressed, and they got me back on track. So if you’re feeling low they might be worth considering in the short term.
Hi Alison, did you recieve my private message ok? I sent it Sunday. I don’t know if I done it right. I put your name in the box that says ‘send a private message’ Hope everything ok. Look forward to hearing from you
No, I haven’t heard nothing from my ‘friend’ I don’t know whats happened, but for some reason she just dosn’t want to see me at all. I think I will just have to accept our friendship has died a death, and move on!
As for the hot flushes, even though I am back on Tam, they are much reduced in number and I don’t now get any at night which I did in the beginning. I think your body adjusts over time whatever.