Breast Cancer Care Forum

Yey really pleased to hear that Nicky!!!!xxx ... View more

Such a shock. I also had the benefit of knowing Liz when she lived near London we used to meet and have such a laugh at what such a ridicoulous situation we had found ourselves in. Such a funny vibrant girl and I will miss her terribly. I had know idea that she was in such a bad way our last conversation in May we were talking about holidays! Truly horrible cruel disease I hate it. Liz biggest hugs and enjoy now being free xxxxx ... View more

Hi I feel your pain. I was diagnosed with secondary breast cancer with mets to bones HER2 as well when I was 24 weeks pregnant with my first child I was only 34. Hurrendous I cried and cried. That was almost 5 years ago and I have so much fun with my daughter and cherish every moment and development she is a HUGE distraction from all the crappiness. There are very bad times of course and it takes so much strength to pick yourself off the floor but I try to concentrate on the day and being a mother.   If I can help you get through this please do contact me and in the meantime big big hugs!!!   Charlotte xx ... View more

Speechless and dumb founded and just want to cry! I didn't know Helen but read her posts and she was such an inspiration with so much love to give to everybody. I'm really stuck for words but rest in peace and listen to the birds singing dearest Helen xxxx ... View more

Hilsy really feeling for you. Would the drug kadcyla be of any benefit to you if you can get it approved? My tumours keep growing under herceptin but now I have started kadcyla I am hoping it is under control as my pain has gone. Not sure whether it would work on the brain but good for everywhere else. Sending you a very big hug xxxxx ... View more

That's great news Kimi! So happy for you. I've just started this drug and based on symptoms it appears to be working as it has taken away my nerve pain down my right arm. The tumour was growing along the nerve root out of the spine very painful but after one cycle the pain went! I am struggling with the side effects though. After my first cycle I had flu like symptoms for a week felt sick and really tired. Just had my second cycle and this time round feel sick again for almost a week feel like I have a hangover which I just can't shift! But it appears to be working :) xxx ... View more

Hi Im her2 positive so have had a lot of her2 and chemo drugs since I was diagnosed in 2010. I have just finished taxol again and now just started kadcyla which is her2 targeted therapy and so far so good. I see you have a two year old, my daughter is three now and despite all the horrible cancer drugs and feeling rotten she puts a big smile on my face and makes me happy I hope your son can do the same. :) charlotte ... View more

Louise so sorry to hear your news. Just wanted to let you know that I was diagnosed with mets to bone during my pregnancy as well.....horrific. I'm 38 being treated at the Royal Marsden too so please do send me a private message if you want to chat further. Big hugs. Charlotte ... View more

Oh Katherine I wish I could help you! It's so shocking that when you are really in need you are getting nothing I really hope that your local doctor will come and see you today. As Helen says let your doctor know so it doesn't happen again. I really hope that when you get some medical support you will start to feel better, more comforted and more supported. Sending you as much love and comfort as I can xxxxx ... View more

Mrs blue yr story is very inspirational! Katherine I have just finished chemo and had radio to the troublesome part of my spine having a scan in a couple of weeks to see what going on. It's just weird to be completely pain free and then it returns part of me thinks the amtriptyline was doing a lot more than I thought to keep the pain away maybe it takes two weeks to leave the system as this was how long I was off the pain killers and pain free for. Anyhow back on the pain killers now so hoping with time it will kick in hoping u are managing yr pain okay arghhhhhhh! xxx ... View more

Your not being dim at all! Hopefully he should be able to give you some answers as these are valid questions. Charlotte xxx ... View more

Kimi rubbish news and just wanted to send you a very big hug. Kadalyca is meant to be wonderful drug though so fingers tightly crossed this will work really well for you all you can do is think positive in the meantime. Katherine feeling for you too. I don't have the same problem as you but I do have the disease growing out of the bone along a nerve root which affects my right arm. My oh my I'm in pain nerve pain is just rotten sorry I don't know how to get rid of it and am still finding my way on how to manage it. Radiotherapy in May just gone made me pain free came off painkillers for two weeks loved it and then it just starts up again so back on pain relief :( Charlotte ... View more

Bev Glad u feeling better I often have bad days and so difficult to pin it down to what it is as there are so many side effects and sometimes I feel like my body just needs a rest! I'm not sure why your oncologist wouldn't put you on hormone treatment and really think you should raise this with him to get his reasons and he also may change his mind if you discuss your thoughts with him. It could be that because you on chemo that he thinks that is going to be much more effective so doesn't want to introduce another drug. It's a tricky one as my onc too doesn't think my letrozole is doing much with me being 4/8 and I tend to agree with him but I have had aggressive growth when my oestrogen levels has been high so it must be doing a little bit surely!????? Charlotte xxxx ... View more

Hi Bev Hope you feeling a bit better now it's so hard when we are anxious about treatment and feeling rubbish at same time! Sorry I don't know anything about falsosdex but i would chat to your oncologist again about whether it's worthwhile being on something. Please try not to worry about statistics I just live by the fact that no one really knows and will just see what happens and taking this approach does get easier with time honestly!! Charlotte ... View more

Hi Helen I just had a filling last week whilst on Denosamb and I didn't check with anyone first. Not sure how the infection complicates things though so maybe you need more clarification if that's more the issue rather than the filling. Charlotte ... View more

Hi Helen At first I didn't realise any letters were sent out but when I did I requested copies and my onc secretary now sends me copies. I'm sure we have a right to see them? I like to know what he saying about me!! Charlotte ... View more

Hi Bev I was diagnosed with bone secondaries in Nov 2010. I am 4/8 oestrogen positive and I am on letrozole. My oncologist always tells me that he doesn't think that my hormone therapy is doing that much to control the cancer but he does have me on it as the side effects don't seem to be too toxic and surely it must be doing a little bit! He puts much more emphasis on my other drugs which are desonsmab zoladex herceptin and perjeta. Plus I was diagnosed whilst pregnant and it grew so quickly due to all the oestrogen floating about!!! Hope this helps! Charlotte ... View more

Hi Nicky Just to add even though we have the same combination I was put on a different 'format' as I had taxol for three Mondays on the trot and then a week off and the perjeta was every three weeks. I think it's easier on the body this way as I never felt horrendous but never felt great as towards the end of the week when I tended to perk up I was hit again by another cycle! I did feel very sick on the taxol and my red blood count got low so had to have a couple of blood transfusions but my white blood count just about hanged on in there! I didn't have any bone marrow boosting injections as the week off tended to give enough recovery to then have more. It's definitely doable but I found it a long slog almost six months for me and a lot of hospital apts! Hope if you need it you will find it doable too. xxx ... View more