Hi Everyone,
This is the 2nd time of being on here, 1st was invasive lobular breast cancer, almost 3years ago, now just been diagnosed with secondary of the bones, spine, lumber etc, not reached organs thankfully.
About to start Abemacuclab, targeted therapy, Denosumab bone strengthening injections and letrazole. Really not looking forward to any of this, as previously had taken tamoxifen/anastrizole with horrid side effects let alone late side effects of radiotherapy.
Thats another story…lol
My main issue now is side effects i might or will face until the treatment stops working or has adverse effects. To add to my already experiencing bone pain cancer mets i have osteoarthritis of the spine…yippee.
Wishing to chat and get advise from anyone going through same thing/ or similar.
My thoughts are with everyone going through this terrible disease.
Sorry you have had a secondary diagnosis. I know it’s scary right now.
I’m one year ahead of you but slightly different drug Ribociclib rather than abemacuclab.
I was on Tamoxifen and also switched to Letrozole which i was dreading.
Anyway, the biggest pain i have is the monthly visit to the hospital for blood tests and Denosumab injection. No adverse side effects, a bit of constipation, which manage by making sure i drink plenty of water and eat properly.
I am as active as before, gym classes, work full time, out walking with my newly adopted dog, and still going on holiday doing the things i enjoy!
Only thing i’d recommend you do is check whether there are any foods you should avoid because they react with your medication (grapefriut, pomegranate for me). Then see how you feel and what side effdcts if any you do get and how bad they actully are.
Hopefully they will not be as bad as you fear, and will subside once you get used to what works for you.
All the best, ask as many questions as you want. I had lists for each appointment!
@purplerose ; so sorry to hear of your Mets. . This is my greatest fear also. I had mastectomy on Sept 1,2022 with lymph nodes involvement. I am ER/ PR positive, HER2 negative. I am currently taking lettuce and 100 mg abemaciclib 2x daily. The abemaciclib will have adverse side effects such as severe diarrhea and abdominal pain. So I had the dosage reduced. Initially started 150 mg but reduced to 100 mg. I haven’t had denosumab yet but will have to go for 6 monthly infusion as I have osteoporosis in my hip and femurs. Sigh. Sending you hugs and thinking of you. Keep us posted.
I’m sorry to hear you’ve got all this to face, having already run the gamut previously.
Do you mind if I ask a few specifics?
What grade / size was your tumour?
Did you have a mastectomy?
Were any lymph nodes involved necessitating axillary clearance?
What late side effects did you suffer from the radiotherapy?
How long did you tolerate Tamoxifen?
How long did you tolerate Anastrozole?
Did you have bisphosphonates?
I ask all this because I’m shocked at how soon you got bone mets (my ignorance on this matter) and I’ve had a niggling concern about rib pain at the site of my tumour. (I’m 18 months post surgery.) In spite of CT and NM bone scans coming back clear, I still don’t feel reassured.
Sorry to be selfish in asking questions addressing my own concerns, but I can’t help with any experience of your upcoming drugs, I’m afraid.
Sending you strength and courage. We’re all here to ‘listen’ and support where we can.
@Yorkshire_Tyke Love hearing positive experiences! @purplerose Sometimes we feel beaten before we have started because of the dread and fright of the treatment…so charge at it, waving your arms and yelling and show everyone what a warrior you are xxx
Apologies for late reply, still reeling/numb from hearing diagnoses.
I will try and put your mind at ease…
So to answer some of your questions, i had (past tense) recent mamagram no cancer in breasts…lol
So i had Grade 2 20mm size, lymph node biopsy all clear. 2 lumpectomies to gain clearence, left breast. Followed by 26Gy in 5 fractions of radiotherapy. This left side effects of odema (damaged lymphactic system in breast, swelling) in surgery breast along with skin blistering.
One month of tamoxifen, didnt agree with me at all. Then changed to anastrozole to which was taken for 1 year. Stopped because caused problems with my already arthritic condition. Didnt take bisphosphonates as not offered.
Can i ask did you have radiotherapy?
I was told recently because i too have extreme tenderness to side of surgery rib area and can confirm its not my bone mets, that from surgery and radiotherapy has caused neuropathy nerve damage. Apparently this can happen. Was told to use ibuprofen gel twice aday, it does help believe me.
I hope i have eased your concerns and understandably so having cancer of any type is worrying and dont ever be put off with raising any niggles with your breast care team/gp.
Thank you so much for your encouraging letter, it has given me alot more strength to deal with whatever is thrown at me with respects to side effects, hopefully have no real awful ones.
When i received my diagnoses, i was left reeling with no real answers as to why? What did it mean and was i not going to live past retirement age, only 57.
I now have a few more questions answered, long list at last appointment.
You mention still working, did you stop initially, then when knew how your body would react to meds, returned?
I am aware of pineapple/grapefruit reacts with A1’s, thank you for the reminder, much appreciated.
I am at this present time booking provisonally loads of mini breaks this is giving me a purpose to move forward and help me deal with all of this…learnt along time ago, lifes to short to delay doing what you love and enjoy.
Hi Siggi
Thank you for your reply.
Ive read that abermaciclib along with A1’s letrozole etc is the new norm of treatment now, for breast cancer treatment, my only options back in 2021 was A1’s with either chemo if suitable or radiotherapy, to which i had radiotherapy. I too was ER/POS, HER2 NEG. two lumpectomies later. I dont think the fear of recurrance ever goes away.
I will be having denosumab as have osteopenia in hips along with osteoarthritus of the spine to complete the picture…yay but i keep smiling even through the pain.
I wish you well, keep strong and will defo be reposting in due course.
I too was 57 when i was given the bad news. It was Nov and as i’m single I continued to go to work, as it was a distraction from dark thoughts.
TBH i don’t think the BCN understood how badlt i’d taken the news as i was so calm (outwardly) about the primary diagnosis and treatment. It was the mention of researching dignitas that made them actually listen to me.
Anyway, I say continued to work. In truth i was pretty zoned out,and work were great at supporting me as was a friend with late stage prostrate cancer.
A couple of months later and s holiday completed i was in a much better head space, as medication was not an issue and first CT scan confirmed it was working.
Its a roller coaster of emotions at first thats for sure. I was lucky as i had no additional medical issues and was classed as very fit and healthy (ironic).
Best thing to do is take the tablets and carry on as normal and try not to wonder is this making me feel dick, tired, aching etc… If you actively think about it, you will likely make it happen.
Anyway ladies, onwards we go despite the challenges this disease throws at us.
I’m sorry you find yourself here. I was diagnosed straight to secondaries in June 2020. Obviously came as a complete shock and took me a long time to understand any of it. I’ve been on a similar drug combo as you since December 2020. I work 30hrs a week. It’s not easy, but it is manageable. I do a lot to make myself feel as good as possible though. I really believe a weekly yoga or stretching class helps. Plus a bit of cardio. Then a healthy diet and lots of sleep. I tried acupuncture but that wasn’t for me, but I find reflexology really helps with aches and pains. A counsellor is also a good idea. I really hope the drugs are as kind to you as possible whilst doing the job. I nearly missed this message as I just check the secondaries part tbh. You might want to join that section as there are lots on the same drug as you. Keeping your neutrophil levels high enough is often a challenge and people haves shared tips on that. Good luck with it all.
Hello again, purplerose.
I had annual mammograms (strong fam hist) and several ultrasounds (cysts) down the years. None of the more recent imaging spotted either tumour. Invasive mucinous cancer in right breast (that self-detected lump prompted referral for investigation - had biopsy, got diagnosis). Diligent surgeon then thoroughly investigated the historically more troublesome left breast and eventually unearthed the more concerning invasive lobular there. 21mm and 11mm respectively, both Grade 2, ER+8, PR+8, HER2-. I opted for full double mastectomy. Annoyingly ILC had reached just the one node (not a sentinel, so again spotted by diligent surgeon during op), which was extracapsular That’s really the concern, as clear margins around tumours (obvs with all breast tissue eradicated as far as poss). Went on to (again elected) axillary clearance to be sure other nodes were clear, followed (belatedly ) by the same course of radiotherapy as you.
You have heartened me by saying that your similar rib pain was not an area involved in your mets, but likely damage by radiotherapy. I’m going to hang on to that - thank you.
I persevered with Anastrozole for 10 months but side effects suddenly rose in severity around 7 months (maybe exacerbated by bisphosphonate infusion) and I eventually decided to give it a rest. Considered other hormone options (AIs and Tamoxifen) but decided the risk of their own possible (and quite common) serious conditions was not a fear I wished to live under. Now live with fingers tightly crossed and occasional dread in the dark of having made the wrong choice. I doubt anyone who’s had cancer can be as carefree as they were before diagnosis. Let’s just keep bouncing the love around. x
Thank you for your reply, purplerose, and wishing you all the very best.
Hi @Yorkshire_Tyke, you advised in your post “monthly visit to the hospital for blood tests and Denosumab injection”. Like you, I too go for monthly blood tests, however, I haven’t started any bone strengthening med. Is your Denosumab injection on a monthly basis also? Am glad to hear that you have no adverse side effects to Denosumab. How long have you been on Denosumab? Thanks in advance for sharing.
I was er + apparently i was the lucky one! First time around i had lump removed clear margins and one lymph node which was clear. 2 weeks of radiotherapy and tamoxfin
Diagnosed secondary breast cancer Feb 2023, so just reached a year.
I had breast cancer surgery in 2019, and all looked good. Late 2023, pain in hip and after lengthy trips to A&E etc. - diagnosis - secondary breast cancer with lots of mets to spine, revealed.
Anyway long story short, I’ve now been on Abemiciclib, Fulvestrant and Zometa once a month, with some partial improvement and so far no new areas. Feeling ok but some ups and downs. Thinking about new treatments and any clinical trials.
You have given me hope as to the fact you are still going strong even with a few ups and downs along the way. I too had breast cancer in early 2021, last month diagnosed with secondary breast cancer, bone mets, think im alittle further advanced than yourself, leg bones, lumbar, spine reaching to neck and ribs.
What i want to ask is if thats okay, is zometa, is that a bone strengthening medication as im about to have denosmb injections once a month, ive started the other two same as yourself, how bad do the side effects get? I know everyone is different but am dreading it as only 4 days in.
Also you mentioned some partial improvements , is it your consultant wanting to try different types (trails) or you?
I know this is hard times for us all. Please take care.
That’s really the concern, as clear margins around tumours (obvs with all breast tissue eradicated as far as poss). Went on to (again elected) axillary clearance to be sure other nodes were clear, followed (belatedly 
Thinking about new treatments and any clinical trials.