Forum Discussion

Clairebear56's avatar
7 years ago

Arimidex. They’re kidding, right?My surgeon prescribed Arimidex increase

 I’m 62 and was diagnosed with Stage 1 breast cancer in late March this year. I feel incredibly lucky not to have received this diagnosis as a young woman, as do many of you are. I also feel lucky that it was detected early and 2 breast preserving operations and 20 sessions of radiotherapy later, I was feeling relatively normal again. I’d been on HRT for 12 years (12 good years I don’t regret for one second), but as my cancer was hormone receptor positive I had to stop. I was really worried about hot flushes but Effexor really helped to reduce the frequency and intensity. I think the anti-depressant aspect had a positive effect on me too. I was really feeling quite chipper. My surgeon prescribed me Arimidex and said if I take it for 5 years, my long term survival prospects are better. I set myself a start date of 1 September and steeled myself for a resumption of debilitating hot flushes. Four weeks in, there was some but not a huge increase and I was thinking “Ok. This isn’t too bad. I can do this”. Then the arthralgia kicked in. I already suffer from arthritis in my right hip and knee, but a long acting anti-inflammatory I take had managed that perfectly well. Now, the pain is constant and keeps me awake half the night. It’s spread to other joints, including my right thumb which is “locked” every morning when I first get up. I read a couple of discussions on BCNA and started taking Panadol Osteo. Nothing. I feel almost crippled. Everything hurts when I get up from sitting or get out of the car after driving anywhere. I hobble like someone aged 92, not 62. I’m so fatigued I can barely gather the energy to drive the car and the most awful gloom has settled over me. I don’t see my surgeon until December, and being the sole practitioner of a small law firm, I have to work Monday to Friday and I have to be on the ball. I stopped taking the Arimidex 5 weeks in (last Saturday) and yesterday I started to feel well again and last night was my first pain-free sleep for about a week. I’m stressed about this because I want to do what I can to survive this psycho disease, but I really can’t live the next 5 years of my life like I lived the last week on Arimidex. If anyone has any tips or recommendations, remedies, drugs, anything that worked for them so that they could function on Arimidex, I’d be so grateful to hear from them. Alternatively, any good news stories about survivors who didn’t take Arimidex would certainly help me to feel hopeful. I’m pretty much the worst worrier I know, so anything positive would be a huge benefit to me. Thanks for listening. Claire
  • These drugs haven't been around for very long and the recommendation to push the treatment out to 10 years is fairly recent too. It would be interesting to find out how the early pioneers of AI are coping.

    I had a 4 week break after taking them for 18 months and, after a couple of weeks, I felt much better. I'm tolerating Exmesetane better than the other two, but it is a slightly different sort of drug. IN theory, that shouldn't make a difference--but reading the findings of numerous trials and research programs has only convinced me that you can prove pretty much anything if you are truly determined to. Just exhausting, I'm reduced to hoping for the best. Hardly a scientific approach, but I'm out of options anyway.

    The drug companies persist in describing the side effects for the majority of women as the same as menopause.  That may be true, but I dunno. Maybe the ones who cope well don't get online and vent?

    I'm about as menopausal as it is possible to get, and apart from the hormones generated by my substantial backside and fat stores, I'm totally devoid of any vestige of my fertile self. You'd think, if you believe the pharma, stopping shouldn't make any difference. But it did. I interpret that as being a ray of hope, I've just got to stay above ground for another 8.25 years to prove it....

  • Can't help Claire as I'm only five months in. Very interested in the responses...
  • Okay. I'm almost persuaded to just suck it up and take HT - although I will talk to my doctor about something other than Arimidex. My question to all you stoic women out there who have battled through 5 or 10 years on this hateful treatment is this: after you finished taking the drug for the recommended period,did your joints go back to feeling the way they felt before you started the treatment and, if so, how long did that take? And likewise with the fatigue - did that also pass once the course was finished? Thanks to everyone who takes the time to read and answer this.
  • Hi Beryl. It's so unfortunate that the side effects are so horrendous, and they really are for some people. It sounds like you're suffering badly, but with a metastatic diagnosis, you don't have any choice I think. You're still going 7 years on from the second diagnosis, which seems to suggest that the AIs are effective. Maybe I'm just not stoic enough, but it's bad enough starting to get old naturally, without that process accelerating exponentially in a matter of weeks. I wish you well in your recovery and admire you for your ability to grin and bear it. Kindest regards. Claire
  • Hi Clair, I was on Arimidex for six years and have been on Anastrozole for almost 12mths. My oncologist made the change as I've had three recurrences in the past two years. (I was diagnosed HER2+ and metastatic in June 2011). I lost my vitality almost immediately on commencing Arimidex but managed to keep on working part time - demanding but I was able to rest in the afternoons. Five years ago my feet became very tender, no medication or alternative treatment has made any difference. A few months ago my onc. made an appt with the Pain Management Clinic and although a sensitive Dr he could only suggest we try different drugs. I've tried a couple with opiates, I did feel more relaxed but they did nothing for the pain. I also hobble like a very old woman and for two years have used a walker, there are times when my whole body seems to ache and any movement is painful.
  • Thanks so much to both of you for taking the time to give me some very valued feedback. It’s goid to know there are options. Stay well my sisters. X
  • Hi Claire

    I am not on Arimidex, I am on Femara. The good news is that I have no aches, pains or fatigue at all. I too am working and happy to be doing so. The bad news is that I have severe vaginal dryness. At 73 this may be partly due to age, but as it struck in a rush 6 months after starting Femara, I am pretty sure Femara started the decline! Femara is also tough on bone density. Mine was excellent before I started, so it's still OK (just) but has declined. This too is a natural occurrence with age but, repeat, was excellent before I started (at 68).  Like @zoffiel, I am staying with it as long as I can but having passed five years and being encouraged to continue for another five, you might like to ask your your surgeon about current thinking (5 years or 10 years) for Arimidex too. We can and do work around side effects but chronic pain would make anyone seriously consider the pros and cons if a decade is in the frame! Best wishes.
  • I'm hearing you, Claire, me and the AIs (I've tried all three available varieties) do not play well together. I've been trying all sorts of things over the last 18 months but the only relief I get is my treasured, single, Tramodol capsule that I take as soon as I wake up. It gives me a couple of hours relief so I can go for a walk or do something else to try to maintain some level of fitness. I'd love to take more, but that's the deal with my GP. One a day and she's agreed to let me take it long term.

    The conversation that probably needs to be had is about the sort of percentage increase in survival the AI gives someone in your position.

    I've already had a recurrence so I'm pretty keen to avoid another or more serious progression of my disease. The stats alone are not too convincing; it gives me about a 25% better chance of living more than five years. That's a great deal of misery for a fairly uncertain outcome but I've resolved to put up with it for as long as I can.

    I'd suggest you bring your appointment forward and ask some tough questions that may make the decisions easier to make. Mxx