Breast Cancer Now Forum

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Hi Lavendersblue your post caught my eye because 3 years on from my radiotherapy I have been diagnosed with chronic myleoid leukemia. It is very frightening because I have had an enlarged liver and other problems, and I have not only to deal with the leukemia but am scared that I now have liver metastes as well. God knows how I'd cope with that over and above the leukemia. I too have been told that its random and highly unlikely to be linked to previous BC. Some people have all the luck eh!! I have to get an ultrasound on the liver 'for reassurance' but of course am very scared they'll find something. alex xxxxxxx ... View more

Sheena - I am really shocked and so very sorry to hear what an awful time you've had. My thoughts and best wishes are with you at this time honey. Look after yourself. And to anyone checking in over the Festive season, much love and joy to you all. alex xxxx ... View more

Thinking of you all - I follow your thread and hope that's ok. I wish you all the best for a peaceful and happy Christmas. xxxx ... View more

Hi lovely ladies I miss you all and also loads of girls I have lost touch with - I did have a lot of fb buddies, then went through a phase where I wanted to blot out the cancer stuff so didn't keep them as friends. Needless to say I regret it now!! I hope you all have a peaceful festive season. Thanks for your support - much appreciated 🙂 xxx ... View more

Hi Lovelies Rach - fantastic news. Lu -inspiring as always 🙂 We were at Edinburgh on Monday and got great news too. Hubby's cancer doesn't appear to have spread and they reckon one blast of chemo will give over 95% chance of no recurrence (wish my stats were that good lol!) Thanks for the kind thoughts. I really miss you guys and this forum. alex xx ... View more

Hi Nicky Just wanted to say I am sorry you are having this to cope with. My niece started showing symptoms of brain mets in summer 2010 and had WBR last October. She is still doing well. She did suffer from really heavy fatigue for a time after the treatment but got over that and was able to resume her dog walking duties! I hope this reassures you a little. xxx ... View more

Hi Rhian - I just read your post and wanted to add my love and thoughts to those of the others. alex xx ... View more

Thanks guys - will let you know, funny its like this is the only place that feels comfortable to talk about stuff that is worrying xxx ... View more

Hi all, so good to see some familiar names here. Feeling a little low, though yes - 2 years + has passed since dx. My husband has a scan on Saturday morning - we think he might have testicular cancer. It just makes me feel like it's never ending. There are numerous other crappy things going on as well as this so I'm just feeling a bit fed up. xxx ... View more

Stopping tamoxifen is very much an individual decision dependant on a plethora of factors. For some people the side effects are very difficult to cope with. In addition, it does not make a great difference statistically - I recently read of 46% recurrence without tamoxifen and 40% with. Fair enough if you are in the 6% that benefit. The drug also has a fair number of effects that are not so great. My compromise is to take a half dose these days. I feel I'm still getting some protection. I dislike the 'one dose fits all' prescribing of tamoxifen. I weigh under 8 stones but my prescribed dose will be identical to someone twice my weight. It is certainly a thorny issue and sparks some strong feelings, but I do have sympathy with people who find that their quality of life is so severely affected. When you are trying to hold down a full time job and everything else, it can be psychologically crippling when you have chronic insomnia, horrible night sweats, painful cramp etc. alex ... View more

Hi - cramp is one of the things I hate most about taking tamoxifen. Calves and feet. It is really painful and I think it is having an effect on the muscle - I've now torn my calf muscle exercising and I wonder if it would have happened at all if I'd not been on tamoxifen. alex x ... View more

So sorry for your loss. xx ... View more

Hi All I am still taking 1/2 tablet a day. I've been dieting and exercising furiously and have lost about 10lbs - its a hard slog. I never get a really good night's sleep and ended up asking the doc for diclofenac for my chronic back stiffness, which has helped a bit. The only reason I take the tamoxifen at all is that I'd probably beat myself up if I stopped altogether and the cancer returned. Crazy though - if the stats are right then only 6 women in 100 really benefit from tamoxifen! Is that enough to make years of misery worth it? alex x ... View more

Wow thanks for this link - it looks really worthwhile. alex ... View more

I've been on tamoxifen for nearly 2 years and about 6 months ago decided (unilaterally) to half my dose because of the side effects. I also wonder if it's worth taking it at all given the stats. No one understands how depressing these SE's are unless they've experienced them and for many the prospect of 5 years and then still a big chance of recurrence is even more depressing! If you google tamoxifen you'll also see that like many pharmaceutical compounds it has its critics. One of the things I ask myself is who benefits from the massive numbers of women taking tamoxifen? -I'll bet big pharma is coining it in! ... View more

Hi Dawn I am so sorry that you have found these lumps. It is very frightening to think you may have breast cancer. You have done the right thing in seeing your GP. Tests will show whether or not these lumps are cancerous. I just wanted to say that the fear and not knowing is the worst experience - much worse than the actual diagnosis of cancer. If you are diagnosed there is a certain relief that comes with knowing what the situation is and how it can be treated. You will get loads of support here should you need it. Fingers crossed that these lumps are something else. Good luck. Alex xx ... View more

Oops I meant I'm NOW doing the diet and exercise lol 🙂 ... View more

Hi just wanted to check in and say hello pixie and evie. I too have often wondered if its worth it taking the tamox. I started it June 2009 and have had ups and downs. The side effects were really rotten for about 8 months then it seemed to ease up. Then it got worse again, with night sweats etc. I cut down to half a tablet for a couple of months and probably reduced to a couple of sweats per night. Recently upped dose again. I wanted to stop but was afraid to. I'm not doing the diet and exercise thing to see if I can lose weight and if that makes a difference. It's a tough decision to stop - then if the cancer returns you'd never know if it was linked to stopping tamoxifen! Tamoxifen is not without risk itself of course. I don't know what the answer is. I think half dose is a reasonable compromise. Alex xxx ... View more