Hi Magpiemaggie,

I'm sorry to hear about your problems with Tamoxifen. My breast care nurse advised a small dose of Venlafaxine (an anti-depressant), to reduce the night sweats. This made a big difference. She also advised me to try Tamoxifen made by different manufacturers until I found one that agreed with me. Her other advice was to take it at a different time of day than you do at present.

If you have now identified your symptoms as being down to Tamoxifen, it would be worth having a word with your breast care nurse to see what she advises.

I hope that you manage to find a solution.

Kind regards,

Jolamine xx

Hi jolamine

Thanks for your advice. Ive had several brands and stuck with the same one since February as it gave me least side effects. I am on meds for sweats and it reduced the amount but not the severity. I’m afraid I don’t have a good relationship with breast nurse so would never call her. I am switching to another hormone treatment next month and hopefully a new nurse at the same time :)

Fingers crossed the next one is better x

Hi Magpiemaggie,

What a pity that you don't have a good relationship with your breast care nurse.You shouldbe able to turn to her with any little problem or niggle. What meds are you on for your sweats?

I am glad to hear that you are moving on to a new treatment next month - do you know what? I hope that you get a new nurse and, that she is considerably better than the one you have at present.

Do please let us know how you get on.

Kind regards,

Jolamine xx

Thanks again jolamine 

I’m on Clonidine for the sweats but it’s only 20mg per day but I don’t think it’s enough. I don’t know which one I’m moving on to, I’ve to have blood tests first and then switch on the basis of what the blood tests show. 

I’m not fussed about having another breast nurse as the one I’ve got is so bad she has put me off them >:)

will update once I have news 

hope you’re keeping well - was wondering if you went back to work after treatment?

x

Hi Magpiemaggie,

I didn't find Clonadine of any use at all. My breast care nurse advised that some ladies found Venlafaxine (a mild anti-depressant) helpful. I reluctantly tried this and, although it didn't stop the sweats, it reduced the severity greatly.

I had a bad experience with my first breast care nurse and surgeon. When I changed to a different surgeon and got a decent nurse, it made all the difference in the world.

Yes I went back to work after surgery, as I am self-employed. I eventually had to cut back because I lost my eyesight in one eye and almost lost it in the other. I wasn't allowed to drive for a year. after a year and a half I had laser surgery and feel very blessed to have got my sight back.

I also developed bilateral lymphoedema in both arms and had to wear elastic compression sleeves from the tip of my toes to my shoulder. As I work in health care this was unacceptable for antiseptic precautions. I also attend a lymphoedema clinic and attend it twice a week for two weeks every twelve weeks. Here I get manual lymphatic drainage and have my arms bandaged in multi-layers of compression bandages. This leaves me looking like the Michelin Man - again an infection risk and, my appearance would frighten any patients away, as I look as if I have 2 broken arms for that time.

I also had a lot of trouble with all of my joints and, had to have both knees replaced. Since then I have had to rely on a walker and a mobility scooter. All of these symptoms were the result of side effects from treatment, but collectively they made it impossible for me to work full time. I still take a managerial role in my practice, but rely on associates to do the day to day work.

How are you keeping now and are you back to work?

Kind regards,

Jolamine xx

Gosh jolamine how do you do it all? You’ve certainly been through the mill and can still work - I’m amazed, puts me to shame. I’m also self employed but my work involve working with large companies so I’m in meetings all day and have yet to return as I’ve lost confidence in my ability to sit in meetings due to excessive sweating then freezing chills, I can’t imagine constantly taking clothes off then putting them back on again throughout a meeting. The joint pain in my knees means that I have not driven for two months as it’s too dangerous and as I live in rural location it would be hard to get into the city. I’m lucky to have a couple of pensions and think I’m going to cash one in and do a doctorate at uni. It’s something I’ve always wanted to do but never found the time. 

My surgeon was okay so wanted to stay with that team, just meant I had to put up with a bat *** crazy nurse. 

Anyway onwards and upwards as they say. X

Hi Magpiemaggie,

I was on Council for my profession at the time that my cancer was diagnosed. I was totally exhausted at the time of diagnosis, whether due to the cancer or all the red eye flights I took to London, returning home after midnight and ready to work again at 8.00am the following morning. I did this at least once a week and sometimes more often for 3 years before I was diagnosed and, felt increasingly tireder and tireder. We had air conditioning in the board room and I never seemed to get that room to the right temperature. Like you, we had meetings all day, then some socialising, then waiting for my flight back home.

Can I ask your age? I went to uni at 50 to do a post-grad degree. Friends thought that I was mad, but I thoroughly enjoyed the experience and, I'm sure that you would enjoy doing your doctorate too. Just don't push yourself too hard. Have you any idea what you would do for your doctorate?

It must be very difficult for you living in a rural setting, yet not being able to drive. I know how difficult I found it when my eyes were so bad and I couldn't drive either. I really feel blessed to be able to drive again now.

I'm glad to hear that you have a good surgeon, even if your nurse is not much cop. I'm sure that if I had to choose between the two, I'd rather have a good surgeon and a rubbish nurse, as opposed to the other way around.

Kind regards,

Jolamine xx

Hi Jolamine

Don’t think I could work full-time, certainly not jumping on planes etc. I’m 51, my doctorate would be in cancer. I was a cancer researcher at the beginning of my career before going into management and I would like to return to it. 

I hope to be driving soon, feel very isolated and can’t wait to be able to travel. Yes I’m happy with the surgeon but feel I should provide some feedback on my experience so that nurse could perhaps learn from it.?

maggie x

Hi Maggie,

I certainly couldn't fly back and forth as I used to do now.These days I restrict myself to issues local to home, which is a lot less onerous.

With the benefit of your personal experience of cancer, I'm sure that you will now be able to put a totally different slant on your research.

I hope that you can get back to driving again soon. This will open up your horizons more. It would be good to be able to give feedback about your nurse. Unfortunately, in my experience, those who really need to up their game, seldom do with negative feedback. Personally, I have always learnt more from negative feedback than from positive.

Kind regards,

Jolamine xx