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highball
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since
01-05-2012
47
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Hugs
21-09-2019
04:46
1 Hug
Many thanks Chick - that was just the article I've been looking for and couldn't find! There won't be that many people in my position as anastrozole hasn't been around as a first line treatment that long, and some people on it take tamoxifen for up to 5 years first. You're quite right about the possible long term effects of course, and I agree we have to be pro-active about our own health. It's no fun having no or very low oestrogen, even without the joint pains/mood swings that thankfully I don't suffer from, so to keep on it isn't something I take lightly. I know a several other people who were only too glad to come off it. I do have regular check ups and although my 'bad' cholesterol is a bit higher than it should be ideally, it's the same as it was before I had breast cancer, and my doctor takes the view that as I don't have any other markers for heart problems, he doesn't want to prescribe anything for it. My bone density won't be tested for another 3 years but hopefully the infusions will help prevent further deterioration. If I did query the anastrozole and said I wanted to stay on it, my doctor would probably refer me back to my consultant, as he did at the 7-year stage. My consultant was quite happy for me to continue on it then, and said that by the time 10 years was up it was quite likely that the recommendation would be to stay on it for life. This isn't the case, but the reason I'm not rocking the boat is that I'm not sure whether doctors have the option for (knowingly!) continuing beyond the NICE recommendation. Highball x
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20-09-2019
01:49
1 Hug
I've now been on anastrozole for well over the 10 years normally prescribed - in fact over 11 1/2 years, and I wondered if anyone else has. It may be that my doctor has just taken his eye off the ball, as routine prescription reviews at my surgery no longer involve a telephone conversation but are done without patient contact by a 'health professional'. I'm inclined not to question this as I would prefer to stay on it for at least 15 years. I was stage 2, no lymph node involvement, but the tumour was very close to the chest wall and the negative margin was only 1mm. I don't have any of the joint pain etc side effects from anastrozole (lucky me!) although my bone density has deteriorated. I was on bone strengthening drugs for years but didn't tolerate them well and am now on yearly Zometa infusions. I had the first of these a few months ago and nothing was said at the hospital about the length of time I've been on anastrozole. Other than that, my hair has thinned drastically, especially in the last year, but I've always had fine hair and that may have happened anyway (I'm 66). Has anyone else been on this drug this long?
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24-08-2011
11:29
I've had a big problem with a hairy face on Arimidex (and seriously thinning hair on my head, ironically, just to give me even more confidence!)My oncologist's registrar said it was God's joke, which was very helpful - not. My BCN was more constructive fotunately. If this problem persists you can ask your doctor to prescribe Vaniqa cream. It takes a while to work and you have to apply it twice a day religiously, but it's improved my problem by about 70%. You have to remove the hair by the root in the meantime by tweezing, waxing etc. You can put make up on as usual - just wait 5 mins. It's expensive to prescribe but you don't need much and a medium-sized tube lasts me ages, nearly 3 months.
Haven't solved the thinning hair though - I must have kept Boots in business with everything I've tried! Two more years to go on Arimidex, by which time I suspect 'll need a wig.
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04-06-2011
08:18
Really appreciate you taking the time to reply ladies, have passed all this positive stuff onto my friend. She'll be able to walk from where she's moving to so won't need to cope with the parking (just as well by the sound of it!)
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02-06-2011
08:08
Thanks Jaclyn, I really appreciate your reply - that's very encouraging!
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02-06-2011
04:03
Sorry to highjack your thread but I hope you ladies of Kent can help with this. I have a friend who has had her sugery at Canterbury but is now moving to Maidstone. She can either have her radiotherapy at Canterbury or transfer to Maidstone (which would be much more convenient). However she's a bit unsure about changing hospitals. Has anyone any experience of the rads dept at Maidstone (or Canterbury) to help her decide? Many thanks girls.
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02-06-2011
01:18
I hope you ladies of Kent can help with this. I have a friend who has had her sugery at Canterbury but is now moving to Maidstone. She can either have her radiotherapy at Canterbury or transfer to Maidstone (which would be much more convenient). However she's a bit unsure about changing hospitals. Has anyone any experience of the rads dept at Maidstone (or Canterbury) to help her decide? Many thanks girls.
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28-07-2010
10:46
Hi - you're not on bisphosphonates for bone strengthening by any chance? I've had endless problems with sore throats probably caused by 'silent reflux' since being put on these for osteoporosis (made worse by Arimidex). I've exhausted all the oral bone strengtheners and can't tolerate any of them. I would have thought the medics would have made the connection if you are on this, but just a thought.
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21-04-2010
02:20
Citybond would be worth a try - we're only going to Crete for a week but they covered us for 2 weeks in Barbados for £90 last year when I was still having regular checkups and my hubby had active prostate cancer. He is now having chemo and will have had 4 treatments out of 10 when we go to Crete - also has high bp and a history of DVT. The cost was £140 for both of us for 'premium' level of cover and the medical surcharge for him was only £70, which we thought was very reasonable. MIA said they would insure us if we didn't go to Greece or Turkey!
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14-04-2010
01:16
Van you are a total hero - I can't believe you are managing to work through all this crap! What a fighter you are. And now you're giving yourself a hard time for putting on weight! It can't be helped, really - the steroids make you ravenous and anyway, you need all the calories you can keep down at the moment! Take care, you are a real star - do hope the side effects get easier, you certainly deserve a break!
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24-03-2010
10:00
Hi ladies. I fractured my leg after taking arimidex for 18 months and my bone density was found to be terrible, so then went on alendronic acid and calcium + VitD3. Apparently it takes about 2 years to get your bone density back within normal limits. Alendronic acid can irritate your stomach lining and cause acid reflux. Sounds like that could be causing the tummy pains Lynn. I had a sore throat for months which my GP realised was becuase of acid reflux and am now on omneprezole to control the stomach acid and have changed to Bondronat, which is taken monthly rather than weekly, in the hope I'll tolerate that better. I've only taken it twice but it seems to be okay. All this stuff to counter the side effect of arimidex. I can sympathise with the glass of water/no breakfast/standing up thing totally - I hated it, but at least I only have to do it once a month now! My GP also offered me some stuff you disslove in water and have to drink EVERY MORNING, which I firmly declined!
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09-03-2010
03:46
Hi. I weigh around 8st 7 lb and take 5000iu per day and my husband, who weighs 14st 3 lb and has prostate cancer, takes 10,000iu. I was taking 1000iu per day since I was diagnosed in Dec 2008, but a bone scan in July last year showed my bone density was still dire (arimidex doesn't help that problem)so I increased it. VitD3 is also supposed to help with side effects from arimidex, and I've never had any joint pains and only mild hot flushes. Toxic levels of VitD3 are far higher than was once thought. I did have a VitD test but the hospital lost the results and I didn't get round to having another. We've both had loads of other scans and blood tests though, and no adverse effects from the VitD has cropped up. We have to get it from the internet though or we'd be swallowing handfuls of lower dose pills.
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16-02-2010
03:10
Hi, I think I've joined a similar thread to this before. I've been on arimidex since March 2008 and apart from occasional cramp in my feet and toes haven't had joint pains. However I do take a fish oil capsule every day (originally for arthritis in my thumb joints) and 5000iu Vit D3 every day as there's evidence that this discourages recurrance and also helps with side effects from hormone therapy. If you are suffering a lot from joint pain VitD3 would be worth a try, even if you only take the dose available from a pharmacy (I get the high dose tablets from the internet).
The side effects I do have are thinning hair, which was very fine in the first place - I've bitten the bullet now and had it cut shorter than I like - and badly reduced bone density. I should have had a bone density scan before I started the drug, but this wasn't done until AFTER I fractured my leg - by standing on it!
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10-12-2009
03:56
Thanks very much for your replies, they are really helpful. Will see how it goes with the reflux meds for now as have only been on them 3 weeks and the doc says it can take several weeks for damamged tissues to heal. If soreness persists I suppose I'll have to put up with it or try coming off Arimidex, which I don't really want to do. 18 months ago I wasn't on any meds and now I'm taking stuff for the side effects of a drug that I take for the side effects of another drug. Not that I'm complaining of course!
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08-12-2009
04:31
Has anyone else started getting a sore throat after being on Arimidex? I've been on it since March 2008 and know it's affected my bone density, but I've also had a sore throat for about 2 months now. My doc thought it was probably gastric reflux caused by bone strengthening meds, but meds for that don't seem to be helping and I've now noticed sore throat is a side effect of Arimidex. Is that because Arimidex causes gastric reflux as well? if so, I'm going round in circles! Help!
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18-11-2009
04:09
Do hope you are worrying unnecessarily, but I know how difficult it is. When I was recalled nearly 2 years ago there were six of us in the clinic who had been recalled, and I was the only one who turned out to have cancer. Of course, it is what it is, but there is lots of support here and in the meantime try not to assume the worst!
Heather
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18-11-2009
04:01
I'm sure you have made the right decision. Your Dad had a very different (and rare) cancer from you, which my friend also had so I know it's difficult to treat and usually diagnosed too late to cure. You are in a very different place and if you need it, chemo is likely to have real benefits for you - also your body will be a lot fitter than your Dad's to cope with any side effects!
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18-11-2009
01:59
When I used adjutant on line a while ago , it just asked if I was a health professional, so I said yes!
There was no waiting list for rads at all at Ipswich hospital but mine were delayed because I had post-surgery problems and my wound wouldn't heal. I had my WLE on Jan 9th 2008 and rads began on March 11th, so sooner than yours but still double the 4-week 'target'. Delays aren't at all unusual apparently and my consultant wasn't concerned at all, even though my lump only had 1mm clearance on one side because it was close to the chest wall. My son, who is a radiotherapist, wasn't concerned either. He proferred the information that in most cases rads are not a big deal in the treatment of primary breast cancer - it's a good excision that's all-important. Rads mop up cells that might have been dispersed by the surgeon's knife, and a few weeks isn't going to make any difference in seeing them off!
I'm sure it's possible to have private treatment, but presumably you would have to have the whole lot done privately. I have 2 friends whose experience of mixing private and NHS breast cancer treatment isn't great, as there seems to be no system of communication between the two, even when it's the same consultant!
Good luck with your treatment, whatever you decide. I would certainly have a discussion with your consultant if you're worried about the wait.
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18-11-2009
12:38
Hi Debs. All the best for your results tomorrow. I think we all agree that you're in the darkest place when hanging about waiting for test results - when you know what's what, you have something to deal with. Hopefully this will all be nothing, but you will find plenty of support on here whatever happens so please keep in touch.
Love Heather
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18-11-2009
12:32
High Sue - glad to see you've moved from 'panic stations' to counting your blessings! Seriously, nobody with breast cancer can say they are 'lucky' but you have every reason to feel positive. Sounds like you are being well looked after too, on hormone therapy already and having your op relatively quickly. I had a marker inserted too - looking on the positive side, this just means the 'problem' is so small your surgeon needs a little flag to find it! All the best to you and try not to worry. The op itself should be no big deal - although that doesn't mean you shouldn't have a lot of pampering of course!
Love from Heather
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