Hope for newly diagnosed multiple site MBC???

Hi LizzyT and a very warm welcome to the Community but sorry to hear about your diagnoses.

Navigating the cancer journey can be such a stressful and challenging time but getting support from people who have walked the ‘exact same' cancer journey can help a lot. (I have a completely different cancer).

The New to Community is like our reception desk where we look to direct you to the best part of the Community for you to get support. The Community is divided into dedicated Cancer Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated Breast Cancer support groups. These groups are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

To connect in with the group click on this link 

Breast cancer

Breast, secondary cancer

…… then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)

When you are ready you can introduce yourself by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.

You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. We also have our Ask an Expert section but do allow 3 working days for a reply.

Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and give support to all the family.

Do get back to me if you need further help navigating the community.

Hello LizzyT

I am so sorry about your diagnosis.

I have MBC and similar diagnosis, lung, bone, lymph nodes.

I was only diagnosed 6 months ago so can't give any long term insights but just wanted to reach out. My medication is working and my disease is stable so that is a good thing

I'm 58 and still learning to navigate through it all. 

Thanks for the reach out, so very much appreciated. I have it in my spine as well which is far more serious according to all the mush on the web I am reading. Do you have it in spine as well?

I don't have it in my spine but have it in my pelvis and ribs. Backache was my only symptom before diagnosis.

Have you started any treatment yet?

I am going to have targeted therapy and hormone therapy starting next Friday when I see the oncologist. A very efficient stage 4 cancer nurse called me and was positive although of course they cant and wont tell you how long you've got. She says this will hopefully stop the cancer growing but will not shrink them. Ive been reading about targeted therapy and it seems this is the aim. is this what you are on?

That's good. Yes this is the regime that I am on. I am on Ribociclib and Letrozole. Also biphosphonate injections to protect the bones against osteoporosis. 

My first scan showed that my tumours had shrunk in my lungs and some reduction in my pelvis.  My latest scan shows stable disease.

I'm not having any other treatment at present, although waiting to see breast surgeon again regarding any surgery.

This is the top line treatment at the moment. I have medical family and friends that confirm this. 

I have heard lots of positives about targeted therapy. 

It's very difficult for doctors to give opinions on longevity. They have told me I should have years and are positive about long term treatment.

It's all very difficult to come to terms with so can understand where you are at right now.

Hi, I have been searching for online or in person support for women taking Ribociclib, so it was really helpful to read your post. I was first diagnosed with BC 9 years ago 2015. Then in January 2024 I was diagnosed with secondary breast cancer in my liver. Total shock & heartbreaking. I have looked after myself so well with a plant diet/no alcohol/exercise etc I have been taking Ribociclib & Letrozole for two weeks, side effects just about manageable with anti sickness meds/laxatives/oils for my scalp & skin itching/morphine for liver pain.

I have tried to research longevity of life on these preventative drugs, but due to Ribociclib being relatively new in the past five plus years it’s tricky to obtain data. The US website on Ribociclib is really helpful. 
hope your treatment is going well. 
take care x

Betty I belong to a forum called Heaĺth Unlocked. There is lots of stuff on there about Ribociclib and Letrazole etc for some years, mist very positive but then the failings would not be here to comment I think. Register  they are really helpful, like MM but caring and honest. I reread all the posts all the time as I am in shock and despairing like you atm and terrified of ONJ from the bone strengthening stuff. Let me know what you think. 

Thank you so much I will definitely take a look. Take care