I need someone to talk to

I was diagnosed in August 2008 with breast cancer. I had the surgery and was offered chemo to be followed by radiotherapy and hormone treatment. As I was so frightened of the treatments and as my prognosis was quite good (80%) I decided to not have the chemo and just radiotherapy and tamoxifen.
However, in May 2011 I was diagnosed with secondary breast cancer in the bone.
My ovaries were removed in Sept 2011 because I was pre menopausal and needed to take Letrozole and I have had a further dose of radiotherapy to my cervical spine area to shrink the tumour. I am now taking Letrozole and ibandronic acid and feeling very stiff, have achey joints and am very sleepy.
I feel very frightened of what is happening to me and don’t know whether the aches and pains are the cancer or the side effects of treatment.
Does anyone else take these drugs and if so what side effects are experienced. Do these get easier with time. My oncologist has told me to let him know if I have any problems but it may be that I am not giving myself time to adapt to the medication.

Hi,

I too am on letrazole, which i take in combination with Zoladex as was pre menopausal also.

1 of the side effects of Letrazole is stiff & aching joints & i have seen many others on here write that this is a problem for them, i sometimes feel like an old woman at the grand age of 41 :frowning:

How long have you been taking the Letrazole ? I have been on them for 4 months & my Onc suggested i took a daily supplement of glucosamine which seems to have helped.

Sarah.xx

Hi Cremello Jo

Sorry to hear you’re struggling with your treatments for bone mets (and sorry you have them, too!) - have you talked to your onc team about maybe trying something different? There are a few other options/combos that might give you fewer side effects.

I’ve been living with bone & liver mets for over 8 years, and have been taking ibandronic acid tablets for my bone mets throughout this time (also on exemestane, an aromatase inhibitor for my ER+++ BC, and the tablet chemo capecitabine). I know some of us have had mixed reactions to ibandronic acid tablets and prefer an IV bisphosphonate to strengthen our bones, but I’ve been very happy on the tablets, which don’t seem to have given me any side effects and have protected my bones very successfully, despite my having very extensive bone mets (in hip, spine, sacrum, pelvis, ribs, skull).

We’re all so different in the way we respond to our BC and our treatments - do have that conversation with your onc team or Mac nurse - with secondaries, we need a careful balance between treatment and quality of life.

Regards, Marilyn x

Hi, I was also pre-menopausal when I was diagnosed and was put onto Tamoxifen followed by Arimidex. I had monthly injections to keep me in a menopausal state. I was very achey and stiff whilst on hormonals and actually feel more mobile and have lost the stiffness etc now I’m on chemo, Capecitabine. Have you read the main bone mets thread? ‘Bone mets-please join in.’ (It is many pages!) Do drop in there, if you want to, we are a supportive bunch…take care, Belinda…x

Thank you guys for your responses. You have been very helpful and its nice to hear from others in the same situation.

I have only been taking the Letrozole for a about 3 months now and the ibandronic acid for an even shorter time so I think I maybe need to give myself time to adjust.

I think I will start taking the glucosamine as well - anything that helps is worth trying. Thanks.

Marilyn you have inspired me. When I was diagnosed with secondaries I thought I was a gonna.

I will definitely read the bone mets threads too Belinda thanks. Should have logged on earlier.

Hi
I see you’ve already had some advice from some of our long timers! It’s always reassuring when you see that many of us are living for many, many years with bone mets - it certainly helped me when I logged on 4 years ago. So I’m now one of them! We do have a wealth of experiences so it’s always worth asking any questions you may have and, as Belinda has said, have a look (and please join in) to the bone mets thread. As to your question about aches I am on Arimidex and Bondronat and definitely feel very achey - usually first thing when I get up. I’m not sure it will ever get really better or go, as my body is now very post menopausal but at an early-ish age so it’s no wonder I (we) feel like old women - one of the downsides of the treatment. I had my ovaries ablated (by rads) in 2008 so am pretty much the same as you regarding menopausal state. Hopefully things do settle down for you and please come back again to join in with us.
Nicky x

Hi All,

Thanks for all the comments and have taken all the advice and spoke to my G.P. this morning. She is going to refer me to the McMillan nurse and has said i need to talk to Mcmillan about changing the Onc. and was very encouraging about every thing, so, I feel mcuh better now and more positive.
Also, seeign how long some of you ladies have been going with bone mets is so encouraging. I will try to join the live chat to-night.
Love Rosiexxx

Hi, Ladies,

I was diagnosed with breast cancer in May 2008 and completed my treatment with surgery, chemo, radiotherapy and one year of herceptine. The prognosis was very good (85%) so I managed to suppress my fear of cancer returning and ploughed fully back into life. Then in
June 2011, I was told the cancer has coming back in the pleuras after onset of breathless. I just completed six course of chemo and physically on the up but emotionally floored. Is this normal and does it ever get better so I can have a new normalish mindset again? Being 42 and always loved and lived life to the full, I sometimes find myself has dark thoughts about carry on, is this normal and does positivity ever return again?

Chiana

Hi Chiana
It does take a while for any positivity to come back but it does seem to return to most if not all of us. I found after my (bone) mets dx in 2008 I was so shocked and scared. Starting treatment (chemo) certainly gave me a focus and something to set my mind to - and, I suppose give me some sense of beating the buggers! After chemo had finished it took me much longer to recover from the SE;s of the last chemo and I was pretty low for some time. It was almost as if I’d given my all to get through the chemo and then had a bit of a melt down. However I did gradually get to feeling my normal self again - and it didn’t take too long honest! However it did take me a while to get my mindset around looking forward and planning for things such as holidays. I used the 6 month ‘window’ between CT scans to plan a treat or holiday but now I have just accepted things as they are and plan much further ahead! The only positive thing to come out of a secondary dx is that I really appreciate the smaller things in life like a nice day, a good walk, doing what I want for a change (and not what everyone else wants me to do!), saying NO to all those things that really aren’t worth it etc. I do live each day as it comes and am very positive thinking just about all the time. I admit I am not having any pain or further ‘intrusive’ treatment at the moment which makes it easier but on the whole I am ‘normal’ and certainly live life to the full. Here’s hoping that a few more weeks of getting over that final chemo will set you up to be able to be more positive. Do come back on here and get support when needed - we do all know what you are going through and sometimes it’s very difficult to express your fears and worries to your nearest and dearest as we feel like we’re burdening them.
Nicky x