Lovely to hear from you Anthi. It's good you're driving again but not so good that you are still having pain.
At the end of the day it wasn't such a huge decision to leave my husband. I'd had my name on the council housing list for 3 years without any luck but a housing association flat came up, brand new and lovely. I was offered it and the decision was whether I wanted to stay how I was or leave and make a new life for myself away from all the stress and unpleasantness I'd had for so long. I'm still adjusting and it feels very strange at the moment and I love it. My friends, who were so good when I was diagnosed with BC, came up trumps again and have been so aupportive. I'm very lucky.
Annie - I finish my 5 years on medication in September and although it will be good not to have to take it every day I'm feeling I bit apprehensive about losing my safety net. I can't remember whether it was on here or in the newspaper I read that some oncs are recommending that patients take AI's for another two and a half years. I'm not sure if I want to do that either!!! I'll have to wait and see what my onc says.
Jan x x
Jan - glad to read that you are OK. Well done for leaving your husband. It must feel very strange after 31 years but I hope you will settle down quickly and really enjoy your lovely flat.
I'm doing fine thank you. I'm still having physio and doing exercises and the arm is still painful, but seems to get a little better every day. I started driving again a few weeks ago. That's painful too, but it's lovely to be independent again.
Annie - I understand your wobble very well. I'm also due to finish Aromasin in July. You say 'a bit longer than 5 years'. - what does that mean exactly? I think there was a thread somewhere on here about staying on AIs for longer than 5 years but I looked for it earlier and couldn't find it. I would love to know more about this.
Oh yes - just found it. It's headed 'Exemestane'.
Take care everyone. Anthi x
Sorry to hear your news, but hopefully you can settle now. i am still being lucky that i am still getting aromasin, but now i am begining to really wobble because i am due to finish it in july and am not sure what to do...... doctor said it is not up to them but onc as they cannot give it after them, i keep reading that it is better if you do a bit longer than 5 years would love to hear what others think or have found out...... (the fear of not having it is outwaying the side effects ) hope your arm is mending well Anthi.
love to all
Haven't been on here for a while. Huge upheaval in my life in that I've left my husband after 31 years of marriage. I've had my name on the council list for 3 years and it suddenly happened in the flash.
Now I'm settled in a flat, a lovely flat which is so much better than I ever thought I'd have. It will take some time to get used to the new me but I'm getting there gradually. Loads to sort out in the flat but I'm enjoying doing it. I've been off line for a while but I now have one of these new fangled netbook/laptop thingies and I love it.
Anthi - I've been thinking of you and wondering how your arm is. I hope you are OK.
I seem to get a different brand of generic exemestane every month but fingers crossed I seem to be OK. TEVA seems to give me stiff joints for 24 hours and then it wears off.
Anyway I hope you are all keeping well.
I have to say that 15 months after starting Aomasin/exemestane I still get joint pain and stiffness but it isn't too bad once I've got moving and provided I don't sit for too long without getting up, wriggling my fingers and rotating my ankles.
I've just picked up a new bag of meds from my pharmacy (I use the local Tesco). The alendronic acid and the quinine are different brands from the usual ones they give and the exemestane is back to being Aromasin!
Yes it is a bit of a performance. The reason he gave for those not being SE's is that the ones listed on the information leaflet are things that people who are taking the medication have reported. He says that headaches, migraine and high blood pressure are symptoms of depression anyway and that he has never had a patient who has had those reactions to Citalopram. Anyway we agreed that I should come off them for a month and see what happens.
I took my last one on Thursday, woke up in the night with severe headache which lasted all day Friday (which is the pattern while I've been on Citalopram) and I've been Ok since then and I am actually under a lot of stress at present so I would have thought that my migraine would have been worse.
I feel OK but I didn't consider that I was depressed before, it was my GP who said I was and to be fair he was right.
How are you with your arm. Are you managing to use it a bit more. It's been a long job you must be pleased to be getting back to something like normal. Hope your physio appointment goes OK.
What a palaver with your GP. Out of interest, I've just looked up Citalopram, and it says in the possible side effects section
'Headaches - very common side effect, migraines - common side effect and hypertension common side effect'. I think you may be right, but why does your GP not just look it up before insisting the Citalopram isn't the cause of your headaches and raised blood pressure ?
Anyway, I hope you manage OK when you come off it. Has your depression gone away now? I hope so.
Good news about your arm. I'm pleased you're gradually getting bak to normal.
I went to see my GP and told him about the probs with generic exemestane. He says that if I have a problem with the Teva then he will make a case for me going back on to Aromasin. Apparently the NHS says that they must prescribe the generic form of drugs, but if there is a proven problem the doc can request the branded form.
My hip and lower back has been very achey the last 2 days, I started the Teva exemestane on Friday. I have to go back to see the doc in a month.
The complication is that he gave me Citalopram for depression last October and I've been having really bad headaches and migraine which are getting worse. Also my blood pressure is up which is very unusual for me, it's usually the other way. Anyway I'm coming off Citalopram and, when I go back in a month, reporting if my headaches have improved and he will check my blood pressure. he says it isn;t the Citalopram causing these probs and I say it is. Pity I didn't have a tenner on it because I'm sure it is!!! What a performance.
I had very stiff, achey joints when I first started Aromasin, it was probably almost 6 months before it went away and then I was fine. I found that swimming and gentle exercise helped quite a bit.
Love Jan xxx
I had painful joints with Aromasin, but stayed on it and that side effect eventually went away completely. I have to say though that in my case the pain wasn't bad enough to stop me exercising.
Sorry for delay posting.
(I've been very busy throwing out the dangerous flooring which I tripped over when I broke my arm !)
Yes thank you, my appointment was encouraging. The arm is by no means fully healed but it's going OK and I've been referred for physio. Have my first appointment next week. I can now type with two hands again !
How did you get on with your GP Jan ?
Sorry Im new to this site. I have been on exemestane for 3 month and my joints are really painful. I don't know enough about the drugs except for the side effect leaflet that came with them. i like to exercise and its stopping me from doing that to. My onchologists has said to either take painkillers or go back on tamoxifen. I am worried I wouldn't get the increased benefits exemestane has to offer and may be giving up on it too easily. Can anyone shed any light on the drug please.
Hello Jan and Annie and thanks for your messages.
I'm still wearing a sling but have an appointment for an x-ray and to see the Dr this Wednesday. I'll let you know what happens.
hello everyone, happy new year to you all, i have been very fortunate my gp/chemist has not changed my meds and am still been given aromasin, still get fed up with SE s but never mind as long as it does the trick in keeping BC away, Hope your arm is healing well now Anthi.
Happy New Year to you too. How's your arm? When is it you go back to the hospital?
Thanks for your good wishes. My GP is pretty good but my BCN told me that the doctor can't refuse if you ask for a different brand of the same medication. This happened when I was on generic Tamox which didn't suit me at all and my BCN told me to ask for Nolvadex D which has sadly been discontinued now. I saw another GP who was loathed to prescribe it, she said her job was to save money for the NHS!!!!!! I stuck out for it and she gave it me on a 3 month trial. It was good and so I stayed on it. I would have backed down though if my BCN hadn't given me such good advice.
All the best to you. I'll let you know what happens on Friday.
Hello everyone and Happy New Year.
Yes, that's the trouble with generics - one seems to be given a different brand every time. I'm now settled back onto the branded Aromasin and feeling much better for it. Good luck when you see your GP Jan. Let us know what happens.
Haxted, hope you don't have any problems when you go back on the branded one.
Take care everyone.
Thanks for the info. I'm going to see my GP on Friday and I think I'll be asking if I can go back to Aromasin. I'm ok now on the Actavis Exemestane after some initial probs but my next lot are Teva and I'm getting anxious about having to start all over again. I may be OK but it doesn't stop me worrying about it.
I hope you are OK when you start taking Aromasin again.
Let us know. Keep in touch.
Hi All - Just thought some reading this thread might be interested to know that having now had different generic exemestanes prescribed each month for the last few months and not doing too well with joint side effects at all (which HAD settled down after a while on Aromasin), my GP has switched me back to branded Aromasin. We'll see! Feels a bit like the generics have not been fully tested with their slightly different ingredients..... But that's not to say those starting out on them wont benefit - just that since side effects take a while to settle, it can be a nightmare having to go through that settling process over and over! Knowing my luck - I'll probably have to go through it all again even WITH a return to the branded version!
No problem Anthi. It's all relevant information. I've found it very interesting to read although my base DEXA was OK.
Once or twice I've considered giving up on hormone therapy, not because of osteoporosis but other side effects which I find diffiuclt, mainly headaches and migraine. I've not got just under a year to do and I'm counting off the weeks. I'm trying not to get too excited in case I tempt fate!!!
I hope you are OK. It's nice to see you posting again and sounding so perky after all you've had to cope with. I like the sound of letting someone else cope with Christmas but not because of a broken arm.
Hello Eliza and thanks for your message.
Good to hear that your checkup went well. It's encouraging too that they hope you will regain normal bone density.
Thanks, Anthi. All went well and I'm safely into another year.
They are still quite encouraging about the possibility of me regaining normal bone density, but then they want me to keep taking the stuff! Also my osteopenia isn't drug induced because it showed up on my initial scan that was about a month after I switched to Aromasin.
I think that they measure at spine and hip because they are the most relevant spots for most people, but that isn't so useful for you, of course. As I understand it, the heel scanners don't give as great accuracy as the DEXA.
Incidentally, I seem to have settled into the generic stuff now.
First I'll make it clear I don't know if your drug treatment will weaken certain bones more than others - DEXA scans are traditionally done on hip and spine because those cause most problems in terms of elderly osteoporosis and there is a raft of data now so they would not do other areas. (Having said that heel scanners are cheap and sometimes used to screen people to work out who mught benefit from DEXA).
Your surgeon may have said osteoporosis from what he saw of the quality of your broken bone. The definition is more specific, based on the DEXA scan, but osteoporosis is a bit like blood pressure in that we arbitrarily come up with a number and give that the definition. It is not like say, BC where you either have it or you don't. Osteopenia is bone density a bit worse than "average" (score less than 0 and greater than -1) so not normally treated. Osteoporosis is score less than -1 and depending on various other factors is often treated.
But when it comes to preventing drug induced osteoporosis the situation is less clear cut because the knowledge of how well the treatment works is less clear - the doctors are making judgement calls. Back to your humerus - it may have been in a worse state than your hip or spine - sometimes even those two can vary in one individual. Also the treatments can have better/worse outcomes for the hip or spine - but alendronate does help with elderly osteoporotic hip fractures and to be honest hips are a bigger problem than the spine (you may disagree if it happens to you - but spines tend to hurt for a while then fuse, fractured hips in the elderly are a major cause of death in the subsequent year).
Obviously totally up to you whatever decisions you make, but for me, if I were offered alendronate and exemestane having had a broken arm with minimal cause(my assumption on your fall) then I would take the two having reminded myself of the potential alendronate side effects to watch out for.(sound like a lawyer now!)
Hello Eliza and thank you for your message. Good luck with your checkup this afternoon.
The info about osteoporosis /osteopenia is really helpful as it's an area I know very little about. Silly question coming up : they test our hip and spine (which give different results from each other) but what about other parts of the skeleton? Can we assume that they are in a similar condition? I'm asking because of course I broke my humerus.
By the way - Alice - I usually walk 3 or 4 miles a day, but I don't imagine that does much to strengthen my arms, so your suggestion to do some bone stressing exercise is good, as is your suggestion to think about my risk of falling. Thank you.
Take care everyone. Anthi x
First, I am really pleased to hear that after a year on the alendronic acid things have improved!
From what I've been told, you don't have osteoporosis and osteopenia is not the same.
My dexa scan showed T scores of -1.1 at spine and -1.2 at hip, both osteopenia. I was also told that with the alendronic acid, there was a good chance of getting back to normal bone density in spite of the Aromasin for another two and a half years, but that alendronic acid is a long term thing and it would be a year before any improvement was seen. I'd need to take it the whole time I was on Aromasin to regain normal density. That seems to fit with the improvement you've had - which is why I find that encouraging. I was also told that they wouldn't give bisphosphonates for osteopenia if someone wasn't also on an aromatase inhibitor, but only if the T scores went down to osteoporosis level.
It is so difficult when we're told conflicting things! From what I was told, it sounds like if you continue with Aromasin and alendronic acid you could get back to normal density if I can because your osteopenia is more mild than mine. I have my regular check up with my surgeon this afternoon so I might check this again. I'm not due to have another dexa scan for another year or two.
Many thanks Alice and Lucy
Alice - the DEXA scan I had at the beginning of November says:
Spine (L1 - L4) T score -2.3. Z score -0.5 and is classified as osteopenia
Femoral neck T score -1.0. Z score 0.5 and is classified as normal
Yes - you are right, it is only the orthopaedic surgeon who said I definitely have osteoporosis. He also said that osteopenia is 'the same thing' as osteoporosis. I had always understood osteopenia to be not as severe as full blown osteoporosis.
Many thanks for your advice
Here's a link to the BCC publication 'Breast cancer treatments and the risk of osteoporosis' which you may find of interest:
Re osteoporosis - it is worth thinking about your risk of falling as well as the degree of osteoporosis - as it is falls plus osteoporosis that break bones. Also if you have only had alendronate for a year then you would have had a degre of osteoporosis before you started it and the alendronate is now maintaining the status quo.
So in that context it might look better staying on exemestane and alendronate.
You don't mention your T or Z score - do you know what that is (degree of osteoporosis) - worth finding out rather than just being told it is osteoporosis.
Also worth considering bone stressing exercise if you are not already a fitness fanatic.
Hello Jan. Good to hear from you. I'm doing fine thank you. I saw the consultant a couple of weeks ago and had the stitches out. That was only 2 weeks after the op and he said it was too early to see any signs of healing. I have to continue to rest the arm in a sling and go back in January to see how it's getting on.
Luckily I don't have any entertaining to do over Christmas and can just enjoy being looked after and cooked for.
With regard to the exemestane: my very nice GP has specified Aromasin on the prescription because of the problems I had with the generic.
Now, however, I'm thinking of coming off it altogether. I've been on it for four and a half years and even though my latest bone density scan showed a very slight improvement after a year on alendronic acid, the orthopaedic surgeon who operated on my arm told me that I definitely have osteoporosis. It's certainly as a result of the aromasin as my scan before starting was good. It's a difficult decision as obviously I'm frightened of a recurrence and/or secondaries. My ER score was 6 (out of 8 I think) and I was hoping to stay on the Aromasin.
Does anyone have any advice for me?
Take care everyone. Anthi x
I thought I would just pop in too see how you are all getting on with the generic exemestane.
Also to see how you are Anthi. I haven't seen you posting recently so I hope you are OK and your arm is healing nicely.
After the initial hiccup on the Activis generic I've been OK. This time I've been given Teva so I'm hoping that this is going to be the same.
I'm working extra at the moment and with Christmas preparations I don't get on the forum to post very often.
Love to you all.
I've been away, so hadn't realised you'd had to go in, Anthi. Glad to hear that you are back and hope you make a quick recovery. Take care of yourself.
hello everyone. just a note to thank you all for your good wishes and to say that I'm back - (well I've been home since Saturday but have been feeling too sleepy to do much). I'll post details on my other thread
I'm sorry to hear your news. All the very best for today. I will be thinking of you. Please let us know how you are when you can.
Sending heaps of love and very very gentle hugs.
hello everyone. afraid i'm going in for surgery tomorrow evening. they're going to put a plate in my arm to hold together the vertical bit of the humerus and the ball. they're not lined up right now and this will hold them in the correct position.
it sounds excruciating and i'm terrified but i shall be very glad to get it fixed properly.
best wishes everyone
I'm doing OK on the generic. Had dreadful headaches for most of the time initially but they have eased over the last week, touch wood. I don't get them as often now so I'm hoping they'll disappear all together. The stiff joints have gone, I still feel nauseous but that's no different to Aromasin.
I do feel for Anthi. I hope she can aviod surgery too.
How are you? OK I hope.
hi Anthi and Jan,
How are things going with the medication ? How is your arm Anthi, i do hope you will be able to avoid surgery.
I was just thinking about you and wondering how you are doing sleeping in a chair? OK I hope. When do you go back to the fracture clinic to see if it's done the trick?
Love and hugs
I'm so sorry things aren't going very well. You must be fed up. It must be difficult keeping your arm in one position all the time. I hope you have plenty of help and support for the next week and hopefully when you go back to the hospital your arm will be in the right position and you won't have to have it pinned
I had lympho in my breast too but over the last 6 months it's subsided, it does make a return sometimes for some reason but it's only very mild.
Don't worry about changing the subject of the thread. I do think though that you may get more advice about the cannula situation if you do start a separate post.
Keep your chin up. Take care
Love Jan xxx
hello again everyone
Jan - great news that your headache has gone away. let's hope it stays away.
well, had appt at fracture clinic today to see how it's going. answer: not too well.
the fracture is very high up and one of the x-rays shows that the ball bit at the top of the humerus is not in the correct position.
the docs have replaced the sling so that it holds my wrist higher up and have told me to keep the top part of my arm in the hanging down position for the next week so that hopefully the ball will move back into the correct position.(i've been trying to keep it upright this past week but may, of course have lain on it at night despite starting the night sitting upright with 4 pillows behind me, but I may have slipped down the bed while asleep). i am not allowed to go to bed but have to sleep in a chair for the next week !! if there is no improvement at next week's appt they will advise surgery - putting in pins.
fun - I have realised that if it comes to surgery they will need to put the cannula in my right (ANC) arm as they will be operating on the left, broken arm. does anyone know how dodgy this is? at the moment i have lymphoedema in my affected breast and - probably just a little in my right arm so am being very careful with my right arm.
best wishes everyone and take care. sorry to have moved this thread away from generics and onto my broken arm. do you think i should start another thread?