Hello everyone,
I was diagnosed 6 weeks ago with lobular BC which has spread to lymph, including in my neck above the collarbone. Am 5 days into trt with Letrozole (no obvious Sxs so far) and Ribociclib (ugh, nauseous mornings). Would be great to hear of others' tips and experiences.
I'm finding Penny Brohn centre to be very helpful.
Hi jane23
Welcome to the forum and sorry to hear that you have been diagnosed with breast cancer. While Ihaven’t the experience you are looking for I noticed you haven’t had any replies yet so I thought I’d reply to you to welcome you to the community. This reply will move you to the top of the discussion. Hopefully someone will be along shortly with an answer for you.
Best wishes
Daisy53
Hi jane22,
I am on my 2nd cycle of ribociclib as well as taking letrozole. My bloods at the end of cycle 1 showed the cancer marker to have dropped.
reading through the other posts I keep feeling like everyone else knows a lot more about their diagnosis, blood results etc than I do.
Had breast cancer 19 years ago so the new diagnosis has hit me hard. I seem to be in a state of numbness mentally, but the drugs arnt giving me side effects that I can’t deal with. I did get nausea to start but I have been given some anti sickness pills that seems to work.
some have said that taking the ribociclib later in the day helped with the sickness.
I have the breast cancer in my lungs & some nodes.
I am trying to keep working as I need the money, but get very tired so just doing mornings. I can retire & get pension end Oct, so trying to hold on for 6 months.
hope you are doing better & coping better with the nausea.
Pat
Hello Pat, yes retirement sounds great! Hang in there.
I finally got a clear idea of what's going on from a consultant today. The only person who's been straight with me so far is my breast cancer nurse, and doc had access to her notes. I've emphasised that I want unvarnished truth however bad!
Nausea dying down (fresh ginger tea helps) and I'm getting much fewer pains from breast so am sure it's working.
Thanks for replying, it's hard to talk to friends about being 'incurable' but I feel ok really :) Focussing on practicalities helps.
Sometimes numbness is really helpful. I don't always believe this is really happening to me.
JC
I know what you mean about not believing it’s really happening to me.
any time you need to talk feel free to send a message, I find it’s hard to vent to friends & family without worrying about how it will effect relationship with them. They have stopped asking how I am in case I tell them.
Your breast cancer nurse sounds like a good one!
Pat
Hi Pat
I'm in a very similar situation to you although I retired several years ago. My cancer has returned after 20 years and I'm now on Palbociclib, Denosumab and Letrozole and tolerating them well after a few initial blips although I think much of it was also due to shock of being diagnosed in my case,
Over the past six months I've realised that folk with secondary breast cancer are thin on the ground at support groups and I hope that's because they are living fairly normal lives and just getting on with it. I was told secondary breast cancer is now treated more like a chronic condition - incurable but treatable.
Anyway just wanted to say well done for carrying on working and enjoy your retirement.
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