Breast Cancer Now Forum

I was on letrozole and Abemaciclib (a sister drug to yours) from my dx last March. I had a good response and achieved full remission. It only lasted a year for me sadly as my cancer mutated to triple negative, but I know some ladies have got longer on your combo.  For me the key thing is trying to accept small victories. If you are currently doing well, try to be content in the now. The future is uncertain for all of us. Spend as much time as you can manage on non cancer maters - I want to make the most of whatever time I do have. ... View more

sorry can a moderator move this to the treatments and issues board? thanks ... View more

My team told me to do all the things I wanted to do when I was dx. I think it depends on the condition of your bones though and how vulnerable they are. ... View more

Just dropping in to say Hi. Been ages since I was on the forum sorry - just not enough time, I have been busy with work and fun stuff, even with the lockdown!    I was dx with secondaries March last year, was on Abembaciclib, letrozole and denosumab. Excellent response - complete remission after 6 months.  6 months later and I have recurrence in my pectoral muscle (I had a lump there last year - that was how they picked it up in my annual check-up). All three spots in my bones still looking good. Changed treatment yesterday to Fulvestrant but staying on the abemaciclib.   Trying not to feel to negative but its hard when you thought things were going well. I even started to dream I might make retirement one day. Now it is back to fretting about whether this treatment will even work. I know my NEAD status was always fragile and temporary, but this really brought it home.   And I can't even go visit my family or anything with this virus going on 😞   oh well I know I am still doing well all things considered there are a lot of people who have things much worse than me. Thinking of you all today. ... View more

I think she maybe meant to post here as she says she has secondaries in her spine?   if you did and do, if tamoxifen is still working for you I would be very hesitant to stop taking it... you are lucky to have been stable on it that long. I know the side effects can be difficult. If you are struggling with them maybe start by asking your team if they can give you something to help manage them? ... View more

Hi Katie. So sorry to hear your news. It is really difficult.   I am in a similar position to you, with spread to pelvis and clavicle. I am on letrozole and Abemaciclib (similar to Ibrance but I take it twice daily every day).  I was only diagnosed in March, so still getting my head round things, but I am trying to keep things as normal as possible.  I am back at work, and doing most of my normal leisure activities. I hope to stay reasonably well for a long time. So far, side effects have been manageable.  I would encourage you to get some counselling. It may help, and I figure it won’t hurt.   Give yourself some time to get used to the new routine, and hopefully you will find you adjust. I am trying to see it like my hay fever and asthma as far as the meds are concerned - just another thing to help me. ... View more

We have a right to see scans, scan reports, biopsy reports, blood tests results...you can ask for as little or as much as you want, and if you get them and don’t understand them, you can ask them to explain what they mean.     tumour markers are something some oncs use more than others, but not necessarily conclusive. Mine were all normal even though I have cancer in at least 2 places in my bones.   i hope you get the information you want. ... View more

Hi all. Just dropped in to update on my original post.   To the ladies who posted to say they couldn’t work even if they wanted to, I hope my first post didn’t in any way suggest I was saying you should. What I wanted to do was challenge the almost universal assumption from other people that if you have a cancer diagnosis you will be off sick, even if you feel well enough and want to work.  I hope I was very clear that your own circumstances will understandably impact on what you can or want to do.   after nearly 5 years NED I have recently been diagnosed with secondaries in my bones.  I currently feel ok with minimal symptoms and manageable side effects. So I am working. I cut my hours to 4 days a week in 2015, and I am currently doing slightly shorter days. I have the same boss as last time round, and he is working with occ health to help me stay in work as long as I want to. They are reducing my workload for now till I see how I get on, and getting in some part time temporary support.  Yes I might change my mind in at any point and reduce my hours, stop working, or be off sick, but right now this is the right choice for me.   I know I am very lucky to have such a supportive employer and line manager, but I would say to anyone, try to have a conversation about what it is you want, be clear about it, and push to make it happen if you have the energy to do so.  Do what is best for you. And whatever you decide, be comfortable with your own decisions.      ... View more

Hi Little P. Sorry for the delay in replying to you, I’ve been going through my own explorations. It’s a difficult time, and you have had a lot to take in,   I am also 46, lobular, bone mets to pelvis and clavicle. My “little” boy is a tad older than yours at 20! He is recently engaged to his girlfriend of 5 years, so my hope is I will be here for their wedding. They are both still at uni, so another 3 years...   I have been reasonably ok about it all. Partly that’s shock, but I had a primary inflammatory diagnosis, so I was always expecting it to come back one day. However, I got on with life and enjoyed it, and I am hoping I will be able to do the same now.  I do cry, but not all the time. I could live 10 years or more, would be a shame to spend them all in tears!   do get some professional help. I have had counselling before, and my local cancer charity is sorting me out some now. It will give you space to think and rant and work through things.     And do do nice things🙃. ... View more

We Hi all and thanks for the welcome. My first line treatment is letrozole, abemaciclib (which at some point I will learn to spell without having to look it up!) and Denosumab.  Started Friday, now playing the waiting game.  It’s so hard knowing you have no control on whether you respond well or not.   but still feeling ok so far. I am back at work and still doing all my usual hobbies.  Tired, but 2 weeks of terrible sleep don’t help there!  Hoping that will improve a bit now I have started treatment.   i hope you are all doing as well as can be expected, and those with children are able to have a special Mother’s Day. ... View more

Hi all. I have been reading this thread after finding out a week ago my cancer has returned (primary dx 2014) with spread to pelvis and clavicle. Still waiting for a couple of scan results, but so far organs are clear. However, there is a large cancerous lump deep in my pectoral muscle which is concerning them.   I will find out tomorrow what treatment is planned, but they have suggested that due to its aggressiveness, it’s likely to be chemo to start even though it’s strongly hormone positive.   struggling to take it all in, particularly because I feel well right now. Coping ok in the day mostly, but the nights are pretty much a write-off...  ... View more