Hi Kazcoco,

I see that you have already had some suggestions from other ladies on another thread. I notice that collectively these ladies have had problems with Tamoxifen, Anastrole and Letrozole. Most treatments come with side-effects of some sort, so it's a difficult call to make,.

I have had 2 bouts of breast cancer in the past 10 years. First time around I had a lumpectomy and I followed this a year later with a double mastectomy. For the first year I took Tamoxifen and had terrible bother with night sweats, pain in all my joints and limbs, weight gain, extreme tiredness and, I do mean extreme! I could fall asleep anywhere, which was most unlike me.

I had a word with my breast care nurse who suggested that I tried different makes of Tamoxifen, as some people can cope better with a specific type. She also suggested taking the tablet at night instead of morning or took half a tablet in the morning, and half at night. I noticed a slight improvement with a different manufacturer, but not enough.

I also had a word with my GP. She prescribed Clonadine for the sweats, but this did nothing. Back to my nurse, who advised me to try Venlafaxine (a mild anti-depressant) for the sweats. This was a great help. It didn't stop the sweats, but it reduced them considerably.

After I had my double mastectomy, I changed to Letrozole and the pain in my joints and limbs increased considerably, but the tiredness gradually lessened. My GP  prescribed a high dose of Gabapentin for the pain. This helped a little and, I was put on to Bu-Trans patches to help ease the pain further.  I eventually had to have both of my knees replaced and will soon have to have my hips replaced. I then started to have side-effects from Gabapentin, mainly loss of memory and concentration, so I had to stop this altogether.

I was then diagnosed with bilateral cataracts and had both eyes operated on. I had to have a third operation for these, as they put in a special lens to correct an astygatism, which I have had from a very young age. Unfortunately, the lens was 25° out and, I needed further surgery to rectify this. Two years later, I lost the sight in one eye and was rapidly losing it in the other. I had to stop driving and needed to use a low vision magnifier to read anything, even the price of items in the shops. I had to wait nearly a year and a half before I got laser surgery in both eyes and, now feel incredibly blessed to have 20/20 vision again and, to be back driving again.

I also developed a dry mouth and have tried all sorts of prescribed and non-prescribed products to help, but nothing has worked. I even developed a thrush infection in my mouth this year as a result of this. I was prescribed a couple of different anti-fungal agents for this, but they had little effect. I had to stop taking some of my regular medication whilst I was taking the anti-fungals, as the tablets would have reacted with one another.

I developed Lymphoedema in both arms  (this may have been due to the surgery rather than medication). I attend a specialist Lymphoedema clinic every 12 weeks, where I receive manual lymphatic drainage and then have my arms bandaged in layers of compression bandages. I do this twice a week for two weeks and, look like the Michelin Man when I am all bandaged up. In between visits, I wear compression sleeves which cover both arms from shoulder to finger tips. This makes the simplest task like washing your hands, difficult.

I had a number of more minor side-effects, too many to mention here, but could cope with most of them. My emotions were all over the place, especially with Tamoxifen, but this improved with Letrozole.

I found that, by talking things through with my care team, we stayed on top of most things and, I managed to complete 6 years on Letrozole in 2017, when I was advised to stop taking it. However, I am still left with a legacy of these effects to this day. All I can say, is that I am still here and, for that I feel fortunate.

I'm afraid that none of us has a crystal ball and, whether or not you continue with Letrozole is up to you and you alone. You are quite right to get as much information as you can, before you reach that decision. I drew up a list with two colums - one for and one against. I compared the effectiveness of other treatments to Letrozole and decided that I would perservere with Letrozole. Personally, I feel that I reached the right decision for me and, I hope that you reach the right one for you.

Please stay in touch and let us know how you get on. I am always here for you, if I can help in any way.

Kind regards,

Jolamine xx