Looking to hear about people’s experiences of metastatic breast cancer and associated treatments

Hi Judae and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I'm not a member of this forum but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Hello Latchbriok,

Thankyou for your message and advice.  I Hope you are very well.

was very much hoping to receive a few replies so appreciate your input.  

Up until now I have been taking letrozole daily and have had 2 bone strengthening injections - one a month ago and more recently 2 days ago.  I am due to have another in 4 weeks and will be taking another chemotherapy tablet which I’ve been told should help the letrozole work more effectively.  I will put this on my profile as you suggest. 

many thanks 

Hi, sending hugs from a fellow member of this awful club that I never wanted to join! I had breast cancer 15 years ago, lumpectomy, chemo and radiotherapy and 10 years of tamoxifen. Living life and bumbling along, got a bad back last March (2023) spent a ton of money on a chiropractor to tell me it was all in my head as I was grieving the loss of my mum and sister within 3 months of each other! Decided to go to the doctor, spent 3 months having appointments one a week when things didn’t change until they decided to shut me up and do a scan! Metastatic breast cancer in bones, lymph nodes, lung and liver involvement. Followed by an apology from my doctor, bless her , not her fault. 
I am on Ribociclib and letrozole and inject myself once a month with denosumab. 
I know exactly what you mean about being anxious, and it feels like it will never end, especially when there are so many scans and appointments to remind you! I wanted to write to you as you mentioned about what level of recovery you could achieve, and I just wanted to say a year ago I was in your situation and lost a lot of my independence. But within 8-10 months of treatment etc I am back to taking my dog out 2/3 hours a day and being very active with my 3 grandaughters! I know I will never be cured but at 57 years old I’m going to keep trying to dodge the inevitable and they are finding different treatments all the time. 
we are always going to have times when we’re not so well, I was in hospital about 3 weeks ago with sepsis, but I just have to think I’m not now, I’m at home. 
we can do this! Everyone’s story and struggle is different but we all have one thing in common so let’s support each other and don’t let the cancer define us! Always here if you need a rant or cyber hug! Take Care, nicky

ps it all sounded a bit heavy! But just want you to know that things do change and you will be you again

Hi Junae Thinking of you and relating to you I also had all your symptoms breathlessness, not being able to walk or climb stairs etc. I have also been diagnosed February this year with MBC. I first had breast cancer in May 2013. I now have it in my bones, hip L4 in spine and liver. My father passed away 28th December then I was diagnosed with is on 13th February. Like you I was unable to walk as I was in so much pain and sleeping was so awful. Since starting treatment which is Abemaciclib letrozole and a number of painkillers I have done amazing. I can now walk slowly for about a mile comfortably and my tumour markers and bloods have all improved. I still have bad days when thinking of family or we are somewhere nice makes me a little emotional. As Nickym let’s stay positive and support each other

Hi Nicky,

Apologies for the late reply- I struggled to log in.  
Your story is very positive and gives me a lot of hope for the future.    You seem to be managing so well and it is great to hear you css as n take your dog out and play with your grandchildren again.   I feel that I am getting stronger and I’m hoping the consultant will start me on the chemotherapy tablets to take alongside the letrozole and bone strengthening injections.   I don’t know what to expect really but hopefully the side effects won’t be too drastic. Yes, you’re right - it’s good that we can support each other through this.   I hope that you get stronger and stronger day by day and look forward to hearing from you again.   Judith 

Thanks so much for your thoughts.  It’s wonderful to hear how well you have progressed.  I hope your breathing has improved now - it’s amazing to hear that you can walk a mile now! and that your tumour markers and bloods have improved.

i’m due a scan next week so will hopefully have some better news then.   I’m still at the beginning of treatment so don’t really know what’s happening yet.

Take care and please let me know how you get on. Thinking of you-Judith