Arimidex and it's fight against secondaries

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I would be curious to know how many still go on to develop secondaries whilst on Arimidex. Was reading one of the secondary threads the other day, and one of the ladies on there was on Arimidex, and had just discovered she had secondaries. Whilst I know that the prognosis is supposed to be so much better on Arimidex after 2 - 3 years of being on Tamoxifen, and obviously I want to do everything in my power to avoid being another lady joining the secondaries site, I wonder if putting up with all the horrible aches and pains, and feeling crap is really worth it in the long run, and is the percentages of say Tamoxifen against Arimidex so much different. I am into my third week on Arimidex, and feel like I’ve got bloody arthritis. Got chronic right sided shoulder pain, which I’ve had for months, but it’s definitely got worse over the last few weeks. I know you get right shoulder pain with liver secondaries, but after a scare a few months ago regarding my liver, the two tiny patches I had on the liver turned out to be cysts etc on MRI, so it obviously isn’t that. Going to GPs on Tuesday to ask for an x-ray. I, like all of us I’m sure, tend to think the worst on any pain we get, when in reality it’s probably some sort of arthritis type of pain, or posture, or the way I sit at my desk or something simple. Anyway, just curious to know anyone else’s opinion on what they think or what their Consultants have told them regarding the benefits of Arimidex as opposed to Tamoxifen. I have to say that apart from the liver scare, really had no problems since my mastectomies and treatment etc, and certainly had no problems at all on Tamoxifen. So it’s a bit irritating now to feel like this three years down the line.

Julie

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Hi Julie, a different perspective but thought you may find it helpful. I was diagnosed with secondaries from the very beginning, in 2003. Arimidex was a fantastic treatment for me, it kept me completely in remission for nearly 3 years.
I know others who, like me, were diagnosed stage 4 from the very beginning who have had even longer spells with Arimidex. I also had a long run with Tamoxifen. I found the pains from Arimidex got better over time…xx

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Thanks Belinda for your response. You say in remission for 3 years with Arimidex, but are you saying your secondaries progressed further when you were still taking the Arimidex, or does that mean you feel had you not been taking the Arimidex they have would progressed quicker Were you on Arimidex from the beginning from 2003 to 2006, or were you on Tamoxifen first from 2003. Sorry to be a pain and ask a few questions. I’m certainly not going to stop taking them. I know they certainly appear to be the better option from talking to people, if you can cope with the side effects.

Just as a tester I didn’t take them for a couple of days, and could really feel a difference in that aches and pains, even the shoulder started to subside, and my mood improved, but then panicked and thought I had better take them, so I will get definitely give them a run for a money, rather than just a month. I was hoping I might get a few other comments, so I could get a few more views on the subject, but maybe I will as the week goes on. I am hoping , as you’ve said, that the pains will subside in times, I’m sure they will. One of my problems unfortunately is impatience. If something doesn’t immediately suit me, then I am looking for the alternative instead of giving things a chance, but I think that’s just me. Always want an immediate answer and sometimes there isn’t one.

Wishing you all the best

Julie x

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Hi again Julie…I was diagnosed in 2003 (in my early 40’s) with both bc and bone mets…my hip fractured and I was diagnosed in hospital…(had replacement hip which is just great…no problems)
I had tumour markers (bloods) taken every 4 weeks to measure any cancer activity and was put on Tamoxifen. This worked well for about 16 months then my markers started to rise so was changed to Arimidex. Whilst I’d been on Tamoxifen my markers had measured very low levels of activity but the Tamoxifen held, kept everything stable. After 3 months of static markers on first starting Arimidex my markers then took a dramatic dive and for nearly 3 years I had no cancer activity that could be measured. My tumour markers were the same as a person with no cancer. Unfortunately once you are diagnosed with secondaries the cancer will eventually find a way round your treatment, which is why stage 4 is incurable but can sometimes be treated for many years. The cancer was still in my body but it hadn’t been doing anything and apart from the side effects of the treatment I felt very well. My markers slowly rose so I had to change treatments again.
I saw your posting and just thought I’d let you know how well the little tablets held my bc…oops yes just seen your question yes if I’d hadn’t been taking Arimidex I would not have had 3 good years, during that time I had no progression. I don’t know the lady you mentioned who developed secondaries while on Arimidex but it sounds as though she probably had micro mets which became active once Arimidex started to fail. Lots of people describe their cancer as ‘coming back’ but unless it’s a new primary the original cancer was there all the time but dormant.
You are not in the same boat Julie, I hope your GP can reassure you, Arimidex can cause all sorts of arthritis type pains! Hope this may have helped with your original question and I do hope the side effects from Arimidex lessen over time.
My Very Best Wishes…xx

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Hi … I recently checked out the figures for myself. My likelihood of staying in remission (relapse free) for 10 years is improved by about 8% by switching to Arimidex. To be precise - I had a 58% chance of remaining clear on Tamox, and a 66% chance if I switch. This still leaves a 33% chance of relapse in my case - which could be secondaries, or a recurrence, or even a new primary. Lets assume half are secondaries … which means by switching to Arimidex I’ve just improved (i.e. reduced) my 10 year risk of developing secondaries by about 4%.

That isn’t exactly huge, and for most ladies, with a better prognosis, this number would be even smaller. If you are really having a hard time on Arimidex, switching back to Tamoxifen is a perfectly good option. I haven’t actually started Arimidex yet - but if I have to switch back well … I think I will be disappointed, rather than devasted.

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Hi Belinda

Thanks again for replying. You have really put everything into perspective, which was really what I needed. It’s quite an eye opener that on Tamoxifen your markers measured low levels of activity, and then on Arimidex for that period of that the markers took a huge dive. Your answer is a massive help. You just hear statistics and you tend to brush that away, but when, as you say, the markers took a dramatic dive on Arimidex, that’s all I need to know.

I can’t remember who the lady on the site was that mentioned her cancer progressing on Arimidex, it’ll be there somewhere on the site, have looked at quite a lot of the Arimidex comments lately, get confused with what I’ve read and what I haven’t. But it’s like you say, basically it isn’t a case of it coming back as such, it’s just quietly waiting in the wings, which is a terrifying thought.

To be honest until the liver scare I never really gave the cancer side of this disease and the secondaries a second thought, which I know probably sounds stupid, but initially after having bilateral mastectomies, and then had infection problems with my reconstruction, was just so engrossed in trying to get my body image back, plus was in the middle of divorce and the usual money sagas that go with divorce, I suppose I just put those thoughts to the back of my head, and got on with life, which I know I was very fortunate to be able to do. It wasn’t until the liver scare that it really sort of hit me. I didn’t have any chemo or rads, because they said at the time, that it wasn’t in the nodes, the grading, and the fact that I had pretty radical surgery, meant that I didn’t need chemo or rads. At the time I was just grateful I didn’t need the chemo and I kept my hair etc, but sometimes now I think I hope they made the right decision. I suppose we have to trust they know what they are doing.

I know I’m not in the same boat, and to be honest don’t know how you all cope on a daily basis. I had three weeks of uncertainty, when the ultrasound said liver mets couldn’t be excluded, until they did an MRI, and I ended up on Diazepam. Couldn’t sleep, was completely up a height. Felt like I had won the lottery when they said only cysts etc.

You’ve been a major help. Thanks again. I don’t think with this disease you can take anything for granted. My Mum had liver cancer, that they thought had come from the bowel or ovaries, but they could never be sure, because by the time they found it, too far spread, possibly was ovarian as they call it the silent killer, don’t they. She’d been back and forwards with a slight niggly pain to the GPs etc, who thought it was a gallstone, then by the time she got to hospital basically too late, and I think sometimes I am a little untrusting of the medical profession, even though I work for the NHS. But then people are human and not infallible.

Anyway, sorry I have rambled. Having a day’s holiday today from work, not a good thing, too much free time !!!

Lots of Love

Julie x

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Hi

In this situation you cope because you have to and thats really all there is too it.

belinda and Angi have given you great replies

Arimidex is statistically a bit better than Tamoxifen, but the trouble with this diease is you dont know where you are in the stats until after everythings done, you might be one of those people it really benefits or you might be one who is wasting their time. My philosophy has been to take everything offered and then you cant look back and say I wish I had done that…

best
Cathy

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Hi Angelbert

This is the thing, it doesn’t sound a huge difference when we talk in statistics and you sort of think, oh well, if if that’s the case, if I am having a lot of problems, then I’ll go back on Tamoxifen, but then reading Belinda’s comments regarding the difference in her tumour markers between taking the Tamoxifen and the Arimidex it’s quite an eye opener. I just want to have as much info as I can, so then if in the future I really find I can’t cope with the aches and pains etc, and they don’t subside, that I can make a rational decision.

Thanks for your comments.

Julie

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Hi again Julie…I can’t imagine going through diagnosis and a divorce at the same time that must have been so incredibly stressful.
My Mum died of the complications of advanced ovarian cancer at the end of this April. She’d had no real symtoms and thought she was just having indigestion problems. She was only diagnosed days before she died. It was such a shock. Speaking to my oncology team I’ve learned it’s sadly not at all unusual with ovarian cancer, yes it is the silent killer. My paternal Grandmother was also diagnosed too late.
Belinda…x

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Hi Cathy

Yes, I appreciate that. It’s very much a case of getting on with it the best way you can day by day I am sure.

I definitely agree on taking everything that is thrown at you in the way in the treatment. My problem is I think too much about everything. I analyse every single thing, and wants to know the ifs and buts, and I just don’t feel like myself, getting out of bed in the morning, just even turning over in bed I feel really achey and uncomfortable, my legs, knees and my elbows and shoulders feel like they are seizing up, but obviously as Belinda has pointed out this should in time settle.

Thanks for your comments.

Julie

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Hi Belinda

Yes it was stressful, had to remortgage etc on my own, which was a bit scary, but never mind, nowhere near as stressful as what you’ve had to go through. All the other things, divorce, money troubles etc. pale into insignificance when it comes to your health, lets face it. We’ve got a lot in common with our Mums, my Mum found out on the Thursday that it was liver cancer, was taken straight into hospital from her outpatient appointment. The following Tuesday she was told, with me by the beside there was nothing they could really do. Didn’t know what to say to her, felt helpless, for myself, but more so for her. She came out of hospital on the Friday and my sister and I decided to nurse her at home, doing it in shifts, a week and a bit later on the Sunday had a blood clot, whisked back in again and then died on the following Thursday with the three of us by the bedside. She never really complained or anything, I think she sort of went into shock. Didn’t expect it, because she was fit and healthy for her age, and looked after herself. My Mum was the same, she just thoughts the niggles were some sort of indigestion type of thing. Your Family sounds like mine, it seems to come down the line. My maternal grandma had bowel cancer, and paternal grandad had bowel cancer. They tried to send me for screening, but so far I haven’t taken their offer up. Don’t know whether to or not.

Julie xx

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Hi Julie, my Mum was too ill to come home, everything went wrong suddenly, Mum has hoped to get home for the weekend and had been told she would be able to have chemo when she was eating more, getting stronger. We were with her when she died and it’s so hard at the moment for me to go forward…but it’s still such early days I guess. Mum was 70. I had genetic testing last year because I found out as well as my paternal Gran having ovarian cancer her sister had died of bc. I was a young Mum, I have a daughter, so wanted to find out if I carried the BRCA 1 or 2 gene. I don’t have either gene but because of family history (which was then only known on Dad’s side) my sister (in her 40’s) has been offered yearly mammograms and ovarian screening. Now Mum’s died she’s decided to have her ovaries removed, the docs agreed and the op is in August. My daughter is in her 20’s and will take up screening in a few years time. I’ve declined ovarian screening, I find it hard enough to deal with bc at times and now I’m on chemo I have bc markers taken every 3 weeks so can never have much of a break from treatment and hospital visits.
I think you’re right to take some time out to decide whether you want to take up the screening offer.
Belinda…x

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Hi Belinda, It’s awful when everything goes wrong so quickly, such a shock to the system. Somehow if people have been ill, you can take it in, but when you find out suddenly and everything seems to suddenly overtake it’s such a hell of a shock. I am assuming you lost your Mum fairly recently, so she must have had a lot to cope with as well, taking your diagnosis in. As a Mum I don’t know how I’d deal with that. My Mum fortunately in a way didn’t live to see me diagnosed. I was the youngest, and always in a muddle over something even in my forties, never been a very organised person, so bless her , she would have been worried stiff for me had she still been alive.

I think you probably have enough on your plate without worrying about the screening. I was offered a hysterectomy about three years ago when I was first diagnosed with BC, because of excessive bleeding and pains, (had been found to have a number of fibroids plus a large ovarian cyst), but at the time because my reconstruction was on-going for a few months, having had an initial infection and losing my original implants, I just couldn’t face anymore major surgery. However, had a total abdominal hysterectomy plus removal of ovaries last July, so at least that risk has been taken away, one less worry I suppose. After my op my Gynaecologist said I’m not surprised you had so many problems, one of the fibroids was the size of the uterus, and the ovarian cyst was quite big and had grown from the time of my original scan, although no nasties, so ended up with the flabby hyster belly, muffin top, and went straight into menopause, which had actually been starting to settle over the last few months. However, I’ve noticed the hot flushes starting up again with the Arimidex. I didn’t really have any menopausal symptoms on Tamoxifen, although I know you’re supposed to, but didn’t notice anything much. My boys are 16 and 19, and I was worried about the whole bowel cancer risk, which is why I’ll probably go ahead eventually with the screening, but a colleague at work seemed to think it could possibly affect their chances of getting a mortgage etc, and insurances etc if they are found to have the genes. Don’t know if this is true or not. If the cancer sufferers in our family had had it early, say 40s or 50s I might be worried more, but they have all been in their early 70s, apart from me, so didn’t quite know what to do for the best.

Julie x

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Hi Julie
I was dx in November. Two months ago my daughter was moving and when she applied for a new mortgage she was asked about cancer in the family. She told them about my dx and it made no difference to her application.[At my age with no family history just bad luck] But this incident does make me wonder if in different circumstances it could affect a child’s mortgage application.
Margaret

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Hi Margaret

I know, this is the worry. Obviously don’t want to do anything that is going to affect their future. The weird thing is though I actually got a remortgage just over a year ago, I wanted a better rate and remortgaged through my mortgage adviser. Had no problems, and as far as I am aware, he entered all my details and put everything down. My life insurance is still in place from three months before I was diagnosed with BC, so I haven’t had to get new life insurance, which would possibly be a different ball game. I don’t see how the insurance company could have any comeback as such, because I was insured in the December 05 and bc was diagnosed March 05.

Julie