I was diagnosed last February just after my 52nd birthday with Lobular Breast Cancer & then in April/May after scans & a pelvic bone biopsy it was confirmed I had stage 4 breast cancer. I have it in the top & bottom of my spine, left & right pelvis, top of my right leg & my left clavicle.
I take Letrozole, Ribociclib, Denosumab Injections & Adcal D3.
I’ve just in the last few days had to have a break from the medication because it’s causing so much brain fog, severe exhaustion & diarrhoea unfortunately.
I know I have to start meds again soon but I’m enjoying a couple of weeks off & just to have a little clarity of mind is just amazing!
Some people seem to have very few side effects, I do wish I was one of them as it’s so difficult to function mentally. I’ve never experienced tiredness like it if I’m honest & having an under active Thyroid also makes me tired even though I take Levothyroxine each day.
Hopefully my symptoms improve soon as I don’t see how I’ll cope on the meds otherwise
Hi. I also have little ones and have recently developed extreme pain when I touch or lay on my ribs. Oncologist is sending me for a CT scan on Monday. What does the pain feel like?
I have had BC twice and am now on abemaciclib and letrozole.
I made contact with my treatment team after having the same issue as you and I had to have a blood test before they would let me restart the ribociclib. For me it was a good week after finishing the antibiotics and knowing my neutrophils were ok
Mine weren’t completely sorted but I didn’t want to be off my meds any longer as my hospital messed up earlier this year and my treatment was delayed unnecessarily. I’ve got tinnitus and vertigo now and waiting for an ENT appointment.
My GP just rang me & she’s doing another prescription for antibiotics for another 5 days but if it’s still not cleared up after that I’ll have to go in & see them.
I’m so hoping they work this time
I’ve never had sinusitis before, I’m wondering if the medication has caused problems, I just don’t know what to think XX
I’ve not been on the forum for some time. The SaBR worked well and the 2 small lesions are behaving themselves. Allowed me to spend another year on Letrozole, Ribociclib and Denosumab combination.
Markers have unfortunately started rising, but last CT (April) was stable, so had the conversation about not panicking it could just be an infection… but it’s hard not to.
Being pragmatic I always knew a change in medication would happen, and after almost 4 years I count myself lucky it worked so long and caused minimal side effects. But hopefullyI am getting ahead of myself.
Either way I’ve had the what happens next conversation so know what my new drug combination is likely to be.
To finish on a positive my next combination will include a drug recently approved. So evidence that new drugs are being approved all the time.
Ive just been reading thru your posts. Ì was diagnosed with lobular bc in jan 2017. Diagnosed with secondary spread to bones in may 2024. I was started on abemaciclib with fulvestrant and denosumab. Abemaciclib was reduced after a couple of months and I was on this for a year and 9 months until ct scan showed something on the chest wall. I was put on capecitabine still with denosumab 3 monthly but the next ct scan only 3 months later showed progression so im now having 18 weeks of weekly lower dose Iv paclitaxel. That was a bit of a shock tbh. I was hoping for longer on the other combos. So here I am 3 weeks in and white cells are too low for treatment. So frustrating. Losing my hair Again is upsetting. But im getting there with that and wig shopping yet again. I am however feeling well and not in any pain. Only se’s is hair loss and tiredness…so far. Hopefully this gets on top of the progression and I get a bit of stability. I too would be interested in hearing what the new approved drug is….or is it not in use in Scotland yet?? Anyway wishing you well. Xx
I am at the very start of this . Diagnosed following hip pain and 4 years of all clear mammograms . Unfortunately the bone spread is extensive - I’m waiting for an oncology appointment to come through . What can I expect are going to be the things happen to me over the next few weeks - what can I expect ? I have done some reading but wondered if anyone with a similar story can talk me through it . I have quite a bit of pain but my job is sedentary most days . Did you still work through it all for the first few weeks ? I obviously haven’t all the info
I have the report from the bone scan , I asked the GP for it and she printed it and read it together . It uses the words activity activity/ multiple etc . I’m just waiting for oncology now …
i honestly don’t know , the worst thing is having to tell people . It’s been such a shock having been focusing on the 4 years of alL clear mammograms . I have a CT scan tomorrow night now so pleased it’s all starting to move . How are you ? What treatment have you had so far or waiting ?
I really hope that your new treatment plan works for a long long time for you & your white blood cells settle.
All the uncertainty around cancer really is very difficult at times. I spend a lot of my time feeling anxious about whether my treatment is still working.
I totally understand as will all the lovely ladies on the forum.
It’s all such a huge shock for you & your family & it will take time to somehow get your head around everything you have been told. I don’t think anything at all can prepare us for being told we have incurable cancer but you know, there are many fantastic treatments we can have to manage it & still live our lives well.
I was diagnosed with LBC in February 2025 & then told in April/May, after having more tests & a pelvic bone biopsy, that I wasn’t having a Mastectomy because the cancer had spread to my spine, both pelvis, right side ball & joint at hips, top of my right femur & left collar bone. I’d had my first Mamogram in December 2024 & was told it was all clear. My breast Dr told me because of the way LBC grows, it often doesn’t form a lump until it’s in it’s later stages & has sadly spread.
I’m so grateful that my meds, for now at least, are keeping it stable & my monthly blood test results are all okay. I have my next CT next month & it is always a worrying time waiting for the results if I’m being honest but I try hard to stay positive.
Please always reach out to your breast nurse for any questions/concerns you may have, they really are such nice, supportive people. Don’t do what I did by bottling everything up inside & telling myself I’m okay. Needless to say I now speak weekly with a palliative cancer psychologist which has been a tower of strength for me for the last 6 months or so. I’m slowly learning that it’s okay to ask for help or have a good cry if I need to, rather than keeping everything inside.
