Really really scared now!

So sorry to hear your news m1yu. I;ve been living with liver mets for nearly 3 years now and up until now they have always responded well to chemo though hormonal treatments no longer work for me either. Indeed I had nearly a year on capecitebine and was no evidence of disease for much of that - there are also other women on these forums who have much much longer periods of being NED.

It is so hard to get your head around initially but you will find your way through it somehow though waiting to start treatment, I am sure, will be difficult. I certainly always just want to get on with treatment straightaway. But it doesn’t sound as if the 2 tumours you have are causing any problems at the moment which is a very good sign. My liver is currently in a pretty poor state but I am still able to have chemo (and still hoping that it will reverse the trend for me). So if you can (and it is much much easier said than done I know) try not to panic about that aspect - the liver really has to be functioning very poorly before they feel chemo can’t be given.

Glad you know about the liver secondaries thread - as one of the early posters on it, it has given me such support and information. I hope it helps you too - and that the FEC knocks those uggers for 6.

Sending you a big hug. Kay xx

PS Georgibella - I thought I was the only one who cried when I was doing something I enjoyed! It’s those happy moments that make me cry but I’m never quite sure why I’m crying!

I’m sorry to hear your news…the liver mets thread is the place I would go to too…most of us experience one treatment which doesn’t work. For me it was Aromasin…it did zilch. But there’s lots of options left for you…Good Luck and Love.xx

Morning Kay & Georgibella

I cry too when I get emotional about the lovely things/friends and family in my life. I find it particularly hard when I am doing something very ordinary around the house and I cannot bear to think of not being there to do it for my children and husband. Unbearable!

Off out to walk the puppy, Bella, that will help!

Sue xx

Hi M1yu
Sorry to hear the results that you got yesterday - what a bummer - but, as your onc has said - there are many things to throw at the uggers (not sure he used those exact words!) I had FEC 2 yrs ago when I had a local recurrence and also bone mets were found. I too had been on Tam after initial dx some 4 years before and it had either not worked or stopped working. I had a good response to FEC and it is do-able although exhausting as many chemo’s are. I managed to work in my part time job during the better days of the 3 week cycle so certainly wasn’t laid low by it. I’ve since been on Arimidex and bisphosphonates - both of which are keeping things at bay at the moment so fingers crossed they will for you. AI’s work in a completely different way to Tamoxifen so there’s no reason why they shouldn’t do a good job for you even if Tam didn’t.
Take care and look after yourself.
Nicky xx

Hi M1yu

I am so sorry to hear your news but your onc does seem to be on the ball and you sound in good hands. Forward to the next treatment now and I do so hope this is the right one for you. I have also had ones that did not do the trick for me - it just seems a question of try it and see.

Wish I could help but sending cyber hugs.

Love Anne xx

Hi M1yu, really sorry to hear your news - glad your onc seems to be really on the ball and I’m sure you’ll feel better once the treatment plan is in place. I’m looking forward to meeting you tomorrow - hope you’re still able to come along.

Lesley xxx

Hi M1yu, Sorry to hear your news but you will as others have said feel better when the treatment starts. There are lots of different treatments available and some work for some people and not others so its just a matter of finding the right one. I had Femara for 6 months and then it stopped working so I had 12 weekly Taxol which showed an overall improvement in my Liver, Lung and Lymph mets and then 6 months Tamoxifen but there was some slight progression and I am now having Capcitabine and having a scan next week to see if it is working ‘fingers crossed’ .
Its a nightmare with all the scans and waiting for results but thats life now and you will read from all the other Ladies posts that life does go on if only in a different way and this Forum is a lifeline for many.
Try to keep positive and take care.
Lesley xx

Hi m1yu,

Sea of S and I were wondering this morning about your outcome when we were having treatment. So we phoned two friends - who i think you’ll meet tomorrow - and discovered what had happened,

Your onc has a really good reputation, he is one bright guy, and I’m sure he’ll get you through. Is there anyway you can bring the FEC forward, or is that not a good thing to do so soon after other treatment?

much love and take care

Hi M1yu
just wanted to send cyber hugs and love to you - and to all of you who have posted
monica x

Hi celeste & others

my onc always has a reputation of bad time keeper though! He’ll be away next Wed, so can’t discuss the treatment plans further. The earliest time I could see him is on 21th, although I could phone him any time before that. I’m going on holiday 26th - 28th, so don’t really want chemo to start the Friday before that (I am being bad timing!) Furthermore, I’m having some tooth/gum problem and that need to be treated before chemo can start. The chemo will also need to be authorized by my insurance company first. Oh man, why does life have to be so complicated!?

I just had this dreaded fear today that I want to give it all up, but that’s just not me and I’m sure it will go away. But I suppose, because I’ve tasted the failure of Tamoxifen, the fear of failure is always there to knock my confidence. I know chemo is completely different to Tamoxifen, but I’m fighting really hard against those negative thoughts so hopefully I’ll back to my old self again.

It’s not helped by lots of discomfort/slight pain I’ve been experiencing in my back/spine/neck - maybe bone mets getting worse or just my mind playing up. Hope I’ll claim down and get my thoughts together by Monday. If symptoms will get worse, will give him a ring and try to get chemo started a few days before my holiday.

Had to email work today and tell them the latest development, also told a few other friends. I hate letting people down, but I was told I wasn’t and it’s not my fault all these have happened.

I’m sorry for going on a little bit. Feel a bit better after getting all those out.

xx

Hi M1yu,
Just read your post on the liver mets tread and thought about replying there but then thought would do it later when I have more time. Now reading this think you need some positive vibes. Please stay positive, there is lots that can be done. The waiting can be terrible though.
Hugs
Louise

M1yu

I’m so sorry you’re results weren’t great…this disease is so unfair & so unpredictable!

I’ve everything crossed that FEC will blast the wee *uggers for you!

Take Care

Hxx

Hi Ladies, this is my first time on here. I wish you all well with your diagnosis and treatments and think the support you give each other is immense.

I live in the Merseyside area was diagnosed March 2008, lumpectomy, chemo, Capecitabine, radioT for 8 months. Went back to work Feb 09 gradually back up to full time.

In Jan/Feb this year was feeling very unwell in the chest area and had real difficulty breathing. Had xrays, scans, bone scans etc and eventually a biopsy which has revealed secondaries in my lungs.

I too am so scared now but have been ‘lifted’ by your messages to M1YU. Do the wobbly knees get better with time ?

Good luck Sandra xxxx

Hi Sandra and welcome to the BCC forums.

Here is a link to our ‘secondary resource pack’ which you may find helpful, it contains an order form for more information about our secondary support services and a ‘living with secondaries’ dvd:

breastcancercare.org.uk/healthcare-professionals/publications/secondary-breast-cancer/*/changeTemplate/PublicationDisplay/publicationId/2/

Our helpline is open weekdays 9-5 and Sat 9-2 and our helpliners are here to offer you further support and a ‘listening ear’ on 0808 800 6000.

Take care
Lucy

Hi Sandra
Yes, the shock does ease after time but we all know how awful the news is when you are diagnosed as having secondaries. I found out I had bone mets 2 years ago and to say my world fell apart is pretty much how I felt. However once I knew what my treatment plan was I did feel I could cope better and probably felt safer as I knew something was being done. I had 6 x FEC (which is what m1yu is going to have) and have been on hormone tablets and bone strengtheners since finishing that. I am lucky that I have been able to lead a pretty much ‘normal’ life since and definitely make the most of every day as we all know how things can change. If you want more questions answered you can always start another thread as sometimes new ladies get a bit ‘lost’ in the middle of a thread. Also if you have any questions specifically about lung mets I know there are ladies on here and older threads that may be able to help.
Take care
Nicky x

Hi Sandra,

Welcome to my “personal” thread, but of course I’m sorry you have to join us.

It sounds like you had a similar experience with me in that just as I felt good enough to go back to work, something came along and knocked me off balance again.

With Nicky’s posts in mind, if you’re dx with lung mets in Feb, shouldn’t you have had your treatment plan already? Or maybe your treatment have started already?

When I started this thread, I just felt I need to off load, didn’t really expect other members to respond. That’s always one of the ways I’ve found helpful to cope on this journey. Most of the time, what I need is just a listening ear. I was over-whelmed by the support I’ve been given (so, thank you to all of you who have replied and those of you who have read my posts but didn’t reply).

The news just started to sink in and I was in flood of tear on Friday morning (guess those at the Bristol meet up later that day didn’t notice that). Had a lovely afternoon today with one of my friends. She took me to a woodland area for a walk and we talked and walked for hours and she helped me to get my thoughts together.

I’m glad you found those messages to me helpful, Sandra, I’m sure you’ll find other posts helpful, too. I’ve used the helpline once before and the lady I spoke to was really nice. I think I might need to use it again in the near future.

Yes, we still get scared from time to time, but we help each other and it’s comforting to know that we’re not alone on this journey.

Sorry for another long post!

Take care xx

Hi ladies,

It’s me again! (hope you are not fed up with me!) Because of worsened symptoms, called onc and got FEC chemo under way on Fri (16th April).

I felt awful since Fri evening and still not quite back to “myself” yet, but missing friends on here already! Suffered all sorts of SE - you name it, I had it to a certain degree. At this rate, I’m not too sure I’ll be able to cope with the 2nd one!!!

Chemo nurse reminded me about the effects on heart as well, so need to discuss ECG with onc on Wed because my mum has heart prob and high blood pressure! Having Neulasta injection (for boosting WBC, which may cause bone pains) tomorrow and getting hair cut on Tue (only grew to a desirable length since the end of last chemo) :frowning:

Oh, dear, I really feel like backing out now! Never mind, need to talk though with onc on Wed and see what he says. If it’s effective, it might help me to cope, but I suppose he can’t tell me that on Wed :frowning:

Hope haven’t depressed anyone and thanks for “listening” to my moans again!

xx

Hey M1yu

I started with 4 x FEC for my primary BC & for 11 days each cycle I just felt yeuch! I really struggled to force myself to walk back into the chemo suite…but I just kept telling myself…if it’s making me feel this bad, imagine what it’s doing to the cancer!

It’s hard going, but you can & will get thru it!

And remember, if it’s really awful, speak to your chemo nurses, it took a fair bit of tweaking to get an anti sickness combination that worked for me.

Hxx

Hi Hayz,

Thanks for info. Spoke to chemo nurse today while having the Neulasta injection. She told me to mention ALL SE I’ve suffered to onc when I see him on Wed. Hopefully, he can change the anti-sickness tablets for me.

Sailed through the last chemo, just felt like I’ve hit a brick wall and really struggling with this one. Hope the cancer is having a harder time than me! Hope I’ll recover in time for next week’s holiday in London, really looking forward to it.

Take care.