Hi, 

it’s good that things are balancing out now, great that you’re going to the gym, I’ve had to put my exercise on hold due to a dodgy knee. Sorry don’t know anything about bone infusions - how often have you to have them?

I'm so relieved to hear things are getting better with the anastrozole, I shall be starting mine in the next 2 weeks.....did you take them at 10 pm from the beginning? Or have you adjusted the times? 

I have friend on the zoledronic...she has it every 3 months and is doing really well. I've just been told Im osteopenia, I have a clinic to attend next Monday, so will find out what meds I will have to have for that....will let you know if I'm to be infused too!!! Xxxx

Hi @Petrgn,

I was prescribed anastrozole but as I had friends who had had bad side effects, I said I'd rather not take it so the oncologist prescribed me tamoxifen. I've been taking that for just over 6 months with no ill effects (I'm post menopausal). I use an online pharmacy so my brand changes almost every month :) I did get hot flushes one month but they subsided and I honestly don't notice anything from the tamoxifen. From memory, the predict NHS tool said that tamoxifen gave me a 1% less chance of living 15 years than anastrozole, and that was small enough for me to go for it in preference.

Because I was prescribed anastrozole, I got a dexa bone scan which showed I was osteopenic. As I took tamoxifen, I no longer needed the zolendronic acid (zometa) infusion to protect my bones from the anastrozole but after considerable thought, I decided the benefits in terms of making my bones hostile to secondary cancers AND improving my bone density meant that I should take it.

I had my first infusion in November 2018. It takes 1h elapsed. I had to go in the day before to have a blood test to check my levels. I was still deficient in Vitamin D - don't know if that is relevant - but oncologist happy for infusion to go ahead. The infusion was really straightforward, into the back of my hand. Pretty painless. After first infusion I felt fine until the next day when I had dreadful flu symptoms - I even had to lie down. Then I took a couple of nurofen and was right as rain. No other repercussions.

I had my second infusion last week. The blood test showed that my vitamin D levels had got much higher and were now in the normal band (I've been taking supplements). I don't know if this affected my reaction to the infusion but as for the first time, the actual infusion was no problem. I worried that I'd feel like I had flu on the day after but I had no effects whatsoever! 

I hope this sets your mind at rest about the zolendronic infusion. I was really worried beforehand, the potential side effects, what it was doing to my bones, but now I've had 2 doses I feel much more confident. 

Best of luck on 15th xx

Hi Gadgetgal,

Thank you so much for all the information in the bone infusion.  I can honestly say now I am actually looking forward to it because of the huge benefit in fighting this breast cancer coming back.  I shall have flu meds’ at the ready and be ready for flu symptoms.  I’d heard it may cause that from my Breast Care Nurse.

I also read that one brand of Anastrozole could be better than another.  I am settled now but was thinking of asking Pharmacist to try another brand for me.

Thank you so, so much for letting us all know that Zolendronic Acid isn’t as bad as we imagine it to be.

I hope all goes well with your treatment xxxxx

Hi

really feel for you. Spoke to a friend the other day who used to be an oncology nurse. She said people often have no idea of the psychological long term effects of cancer. I think we need to look at the whole picture, not just the drug... or at least the whole picture of the drug.

I'm a pretty positive person. I sailed through the most heavy duty chemo and then surgery with only a few days of 'black dog'. I thought 'I've got this' and marched into Maggie's straight from my last radiotherapy. I still had quite a few months of herceptin jabs to go and was soon to start ibandronuc acid and ananastrozole but I thought I was well on the way to resuming normal service. Did a lovely course at Maggie’s, felt positive, started putting myself forward for a few things including leading a Shine walk and raising £4K for CR.

just over a year later I'm really struggling with depression. Like you I'm not a cryer but it's now pretty much a daily event if I don't force myself out into excercise or company. I often wonder what the point of taking a life extending drug is for someone with circling suicidal fantasies... and then I remember a few other things that have happened that would have been a real challenge, life and hurt and love and disappointment and death of dear ones happen whether or not we have cancer. change will happen because it will. The pandemic would have called a halt or demanded a great change in my career without  cancer's contribution.

We cancer patients on Anastrazole are nearly all adapting to accelerated aging in someway... feeling tireder or stiffer. In my case I also hear and see less well cos the chemo accelerated existing problems. That's a lot. Lots of us are adjusting to lack of libido. I don't even have a partner but I'm still learning to cope with the idea that that bit of my life may be over. That's quite a bit too. Some of us have friends and family whose cancer-empathy fatigue has kicked in. Unsurprisingly they think the worst is over now and you should be grateful to be alive. It's not great feeling that people have had enough. A lot of women have lost confidence in themselves in the workplace, feeling less able and having been away. So much.
 

i haven't researched the research extensively but it is certainly possible that the instances of depression as a side effect of Anastrazole are the result of so much more than a chemical effect on the feel-good juices. It's true that my sister-in-law felt massively better when she came off it. Anyone would be less depressed if they had more energy and fewer aches. I've started a course of weekly psychotherapy (it was actually a GP referral and the charge is based on your income so I only pay £25 a session which I can afford, it would be less if I had less). That might help with all the things rising to greet me without cancer or it's treatments... if I still find my mind maundering round and round the insoluble problem of how to die without hurting those who love me, I'll come off the Anastrazole. Then at least I'll know whether the drug was a factor in the depression.

the worst thing about depression is the loneliness. Just chatting with your gp and one trusted friend is a great start. Sounds facile i know but it helped me.  Xxx

Hi netia,

I read your message with a heavy heart knowing how you feel.

I could relate to everything you say but I have been able to come to accept that life is different now, but, it is the life I have and I shall be living it the best that I can.  'The best that I can but not my best life - that was before cancer and this is now.  I, too, hate the effects of anastrozole but, after trying many brands found one that suited me.  I do ask myself though if perhaps my body has just got used to aching because it doesn't seem to be as bad after four years of anastrozole. As for a relationship I have accepted because of the 'ladies area' effects of anastrozole that is probably, but not definitely, not to be a part of my life.  But there is so much more to intimacy than the obvious and I am sure, with the right partner this can be overcome.  This life I have now is different but I see so much to live for and realise this horrible little white tablet is helping to fight a recurrence of cancer.    

Please, please pick that thought out of your head about dying without hurting your loved ones. and throw it away.  We always say we are in a club nobody wants to be in - we are also in the anastrozole club nobody wants to be in.   

Try to enjoy the holidays and know that there is so much support for you here from people who really do know how you feel.

Best wishes,

Trisha xx

Thanks to Trisha for a loving and positive response and very much love and best Christmas wishes to you on this forum. I'm sure that encouraging each other to lean in and accept is a great strength for us.

Netia xx

So good to read everyone elses comments - really helpful.

Sometimes I think I'm going mad and have to make myself believe there really is a future for me. 

2022 has been the worst year of my life.  After 32 years of marriage, my husband said it was over. It had been difficult for a few years, with his drinking and depression. I agreed to everything he said.  He changed his mind about everything he had agreed to. In the end, he sold our house for less than it was worth. His name was on the deeds. so I ended up paying a solicitor to try to get my half. He had run up credit cards and a loan in my name, so I had to pay for those. I'm 71 and only have my state pension. It has been a complete nightmare. I found out I had breast cancer in Feb 2022 via a mammogram. I had to move out of my home on the Thursday. I moved into my sons small flat with him. My op was on the following Tuesday. That weekend I had never felt so alone.  My son has been brilliant. He let me sleep in his bedroom, and took the sofa bed. He took me to the hospital and brought me home. It has been horrible.

Now, 8 months later.  I still cry almost every day. Sometimes I'm not sure why, and others I feel lonely and sorry for myself. I am still living at my sons. Thankfully, he has a girlfriend, and stays with her Friday - Tuesday, so it gives us a break. I have just had my divorce settlement, which took forever. the cost had to be put on my credit card. I had to pay out £32,000 in fees and his loan repayments. I am left with enough to hopefully buy a very small studio flat. My ex has never been in touch to ask if I am alright. 

I am taking Anastrozole so maybe the tears and low mood is partly its fault. I get an itchy scalp, and struggle to get to sleep. I take it in the morning after toast. I now have been told to take Vit D every day, which I do after my tea. I have been advised to take another Vit D tablet once a week?Wondering if anyone else is taking this?

I had a lumpectomy, but no reconstrction. I feel ugly. My hair is thinner now and I have put weight on mainly my stomach.  I have had 2 panic attacks, once in the hairdressers, where they thought I was having a heart attack. Never suffered with them before. I am now very anxious all the time. Again, could be the tablets? 

It has helped to just put all of this down. I cant put it all on my son, its not fair to burdon him.

Thank you for listening x

Dear jigsawgirl,

February 2022 is less than a year ago and you have been through so much.

I know it is easy to put everything on that horrible, yet wonderful, little white tablet.  Yes, it has lots of side effects (which can be lessened over time, trial and error sort of thing) but what life has dished out to you all at once is hard for me to think about let alone actually live through.  Your marriage gave you a wonderful son who, it seems, is there for you.  The divorce is over and you say you can move into a little studio flat which will be your haven.  You will get through this but have you thought perhaps of discussing help from your GP?  I have found many online crutches to get me through in the dark times but am reluctant to put them here as even though recently retired as a Registered Nurse I only have my own self-taught tools to get through. 

I am in a good place now, four years cancer-free struggles with anastrozole (physical only)  yes, but managing them (with a change of pharmacy).  Just popped into my head as I am writing this but do you belong to a good breast cancer support group?  I do and this has helped because we are friends who really understand what each of us is going through - we do things such as a monthly coffee morning in a garden centre and pamper days once a month.  Something like that would be nice for you as you start a new life away from drinking and abuse - just a life lived your way.

Just know there are lots of people who want to help you get through and come out the other side of this.  It won't happen overnight but the journey starts 2023 - goodbye 2022 - don't look back the past is an anchor to stop you moving forwards.

Trisha xx