I had a mastectomy and reconstruction. I have metastatic cancer in the bones.
I also have 3 monthly Zometa, monthly hormone injections of fulvestrant (instead of Letrazole) and I'm 3 1/2 years into treatment.
I get tired and can't do quite as much as I could before but life is good.
Good luck with your treatment. xx
Nice to hear from you and experience some more of your positivity.
It’s also useful to know about potential side effects from someone who’s actually taking the meds rather than just reading the data sheet!
My biggest concern at the moment is how to tell the family? I have boys in their 20s and an elderly Mum, among others but it’s nice to know that for the moment they’re in blissful ignorance!
Sue (Bagheera) This is my Cub Scout Leader name!
Aw bless you bagheera I was the same when initially diagnosed I had initial bc in 2004 then secondaries in 2018. Its so scary when you are first told I had a 5 month wait before being diagnosed as was first told it was scar tissue then pushed to get seen again and found to have secondaries. I look at it as treatable but not curable cancer but focus on the treatable part . I take my palbo at night it did make me feel a bit nauseous at first and a bit of loose bowels took lansoprazole for gastric symptoms which helped got it from hospital. The palbo and letrosole are not too bad re side effects and if they are working it's defo worth it . Private message or post here if you need any help reassurance glad to be of support xx .love and hugs Liz x
Hello Liz 0418
Your post has been the most uplifting piece of news I‘ve read since my diagnosis of secondary breast cancer 5 weeks ago. To read that you’re 3 years into your treatment is so positive. I was convinced that I only had 3 months left !!!
I was originally treated for triple negative, however the Chemo didn’t work and I ended up with a Mastectomy and fully axillary node clearance. Then 3 weeks post-op the tumour came back along the scar line with skin involvement and lung secondaries.
Just about to start the same regime as you, Palbociclib, Letrozole and 3 monthly IV Zometra.
Feeling a lot more positive now.
Thank you secondarysister2 and Daisy 1257, that does help to hear that. It is all so new and really just wanting to settle into a routine with it all. I haven’t had any other scans yet either so hoping that once I have and it shows some stability and or improvement that that will help too. That’s great about your mum’s scan result secondarysister2.
I was diagnosed straight to secondary and only 39, otherwise fit and healthy so this is taking a lot of getting used to. My secondary is in my bones (the pain in my back was what eventually led them to find it). It is in T9 and T10, a spot on one rib and one on my sternum (I think - less sure about that one).
It was interesting to read the discussion about surgery on the breast too as I have not had that but may in the future depending on how everything responds to treatment.
Thank you both for taking time to reply. I hope you both have a happy and positive day xx
I am also on round 3 of Ribociclib. So far my bloods have held up OK but I have read loads of posts about doses being reduced and people still reporting excellent results. I think it is all about finding what suits your body.
I hope this helps to ease your worries. Great to chat to someone else on the same treatment. Where are your secondaries?
Yes!! My mum is on Ribociclib, Letrozole and Denosumab... after her first one or two cycles it was decided to lower her dosage too due to low neutrophils. She has been taking it since September 2020. Last scan was stable with signs of improvement. Her blood levels have also been fine since... she has settled into her treatment and we crack on with life as we did before 😊
I hope this helps! Xx
Just wanted to say hello. I am on ribociclib, letrozole and denusobab too. It’s nice to find people on the same treatment. I am meant to be starting round three today but my levels are too low in my blood again so waiting a week. I had to do the same after the first round of treatment too. I’m worried about them lowering the dose, has anyone else had their dose lowered and still had positive scan results?
Thanks for your reply and clarifying about the surgery. I hope you get it sorted soon.
I only asked as I have read some articles where it has been suggested that surgery can give you a better overall survival even with SBC. I appreciate I'm clutching at straws but just thought I would ask.
I don't think there is a facility to private message on here, I will have a look though.
Keep me posted and good luck with the surgery if it all goes ahead.
Sorry for the late reply, Original plan for me was to have chemo then mastectomy but when they found the secondaries they said op was out of the question,
My primary tumour is right in the bra line and it has ulcerated to the skin, but the ribociclib has cleared the sore up but onc has said whilst it’s healed she wants to consider surgery as doesn’t want it affecting the skin again, she said it isn’t a cure but would hopefully stop a re occurance there, I will keep you updated on what they say. Is there a way on here to message privately xx
Thanks for your reply. I'm so glad your treatment is keeping things stable. I hope that continues.
I had good results on my scan last week so I hope that continues.
Thanks for clarifying Re the surgery.
Hi I am 3 years into treatment on letrosole and palbociclib have scans every 3 to 4months and this is keeping things stable have secondaries in lungs base of spine and pelvis all tumours stable and cancer tumour markers checked 3 monthly show they are within normal range. A few people on here seen to have ribociclib toxicity in liver. My neutrophils have been below 1 on a few occasions but treatment just delayed for a week and also dose reduced from 125 mgs to 100mgs now on 75mgs which is keeping things stable u also was on denusamab but now on zometa for bones 3 monthly infusion which costs less apparently. Good luck with treatment love and hugs Liz x. Haven't had surgery on local reoccurrence tumour there us debate about the effectiveness of this my oncologist said if it increased or was causing pain they might consider it but it isn't any larger. Xx
Thanks for replying. Yes it's definitely great to chat with people on the same treatment.
At the moment I am finding it fine, I don't really have many side effects. I do get quite tired around 9pm but I'm also on strong painkillers (zomorph) so it could be that making me tired. I haven't really had any hot flushes/sweats either but kind of waiting for them to hit me any day!!! I had my 2nd zoladex injection last week and have only been on letrozole since 1st week May.
So far I haven't had any problems with my blood levels. My oncologist has staged the drugs as he was concerned about tumour flare on my spine but so far been OK, thank god!.
Great news that your 2nd scan was stable. Do you mind me asking about surgery? Is that because they have managed to clear the mets from the rest of the body with treatment and now want to remove the breast tumour?
I only ask because my doc at the start said they don't do surgery with secondary breast cancer but I have read quite a few posts on here and other forums where women with secondary breast cancer have had surgery so I am a little confused.
It would be great to stay in touch with us being on the same treatment. I really hope the treatment continues to work for you.
Im about to start my 9th round of this combination on Monday and still fine on it justchad 2nd scan results and all stable and oncologist has now said she wants to speak to surgeons to see if they will be willing to operate,
The only side effect I get is hot flushes and my neutrophils are normAlly on just above 1 when I get my bloods done. How are you finding it ? Nice to speak to people in same treatment xx
I was only diagnosed in February, so on my 3rd round.
Zoladex and letrozole are fine, except for the night sweats...in the grand scheme of things, I can cope with that! I have also had my first of monthly injections of denosumab for my bones and I’m now taking chewable tablets for calcium and vit D.
With regards to the ribociclib, after my first round, my platelets went pretty low...it was decided that i should have a reduced dose, so 2 tablets rather than 3 a day. I had no sickness or diarrhoea, so was getting along just fine.
I was going for weekly blood tests to check my liver function. They showed high levels of toxicity in my liver which my Onc doctor was sure was from the ribociclib and not the cancer itself. Because of this, I was told to stop taking the ribociclib.
So, for the past week I have been carrying on with the letrozole and calcium tablets only.
I met up with a breast care nurse, as the anxiety of it all was getting the better of me. I’m not due to see my doctor for another week, so just needed to talk to someone about what the next possible steps could be.
I’m to have 2 blood tests next week just to monitor what’s going on...my last set of bloods still showed high levels of toxicity, but no worse than before...so that’s a positive!
It seems I’ll be starting on palbociclib the next time I see my Onc doctor, so with that brings anxiety on what possible side affects there will be with this new drug.
It’s definitely annoying and just shows that its not a ‘one size fits all’ scenario and every body is different. For me personally, I wanted to get the treatment, have it go smoothly and get on with life...so hopefully this palbociclib will let me do just that!
I hope this reply doesn’t come across as negative! Throughout it all, I’ve luckily felt as fit and well as can be expected...but, this is why we need to have regular bloods taken to be able to monitor what’s going on inside and I’m thankful for the team at the hospital who I feel able to contact whenever I need some reassurance etc.
Hope this helps
I was just reading your post and noticed we are on the same treatment, Ribociclib, letrozole and zoladex.
Do you mind me asking if you are still tolerating it well? I started end of March 21 and so far so good with little side effects. I was diagnosed straight to secondary early March with mets on spine, liver, lungs and ribs.
How long have you been on this combination?
its perfectly normal to feel upset and let down, I was diagnosed in August straight to secondary, it was such a shock as I had no aches/pains not even a lump, I had a sore under breast which didn’t heal,
after pet scan I also have it in lymph nodes, distant lymph nodes and patch on pelvis.
Atfirst I thought I would never come to terms with it and from waking on a morning till going to bed it was constantly on my mind.
Im on ribociclib letrozole and zoladex and tolerate it very well, it has definitely got easier as the days and weeks have passed and some days I don’t even think about the cancer, I never thought I would say that, but I took advise from this forum and take one day at a time, if I’m having a bad day that’s ok, I’m allowed but can honestly say I have more good days.
My most recent scan was stable so treatment working,
Stay strong and positive and there’s allways someone on forum to give advise 💕 xx
im sorry to hear about your sbc diagnosis, it must have been a huge shock. I have sbc in two of my vertebrae and for the last 4 years I have been on Palbociclib and Letrozole. Yes there are side affects but they are manageable and although there are some things I cannot do and I get tired easily, I do believe I have a good quality of life. Like many other ladies I was never warned by the hospital what signs to look for and my GP just dismissed my pain as muscular, but since diagnosis my treatment has been excellent. Please rest assured that you can move forward and get on with your life and there is always lots of support on this forum for when you’re feeling low. Take care and keep safe.
So sorry to hear of your diagnosis, it's incredibly hard to take it all in, or even believe it's happening to you. Everyone here totally understands what you are going through and please vent all you like!
Don't feel guilty and it's certainly ok NOT to feel you have to be doing something amazing every day, yes just 'be'.
It's the shock of being diagnosed and the 'why me? feelings that overwhelm us, your thoughts are not dumb, they're so normal, be kind to yourself ❤.
If you read a few more posts you'll see that a huge amount of us were let down by our GP's etc. our pains were dismissed, just given painkillers, you're definitely not alone there. It's infuriating I know, but how were we to know, we're not doctors, we trusted them.
Hoping this last bit may help you, I've been on Ribociclib coupled with Letrozole since January 2020, I was finally diagnosed in December 2019 with stage 4 bone cancer, after having terrible pains since the October. So now I'm able to have an almost normal life, I've accepted that I'll be on medication for ever, but it's given me my life back.
I got proper pain control from my local hospice, they know what they're doing and it's so much better now. Also if you can, exercise is good, I love to walk.
I wish you all the best, will be thinking of you ❤ and sending you virtual hugs, look after yourself.
Some people live for many many years
Hi Seren23, I was diagnosed with secondaries in September last year, in the middle of treatment for primary. I'm on similar meds to yourself and just wanted to let you know that my first scan after starting treatment showed healing in the bone and no more spread. I'm tolerating the medication really well and am only working from home due to covid, I'll be back in the office after my second vaccine. Stay strong, it's all very daunting I know that, but it will get easier in time
just wanted to vent...
It’s really just sinking in that this is the last weekend before I start the chemo that I will be on for the rest of my life. God, it’s a weird feeling.
I have so many thoughts and emotions going forward.
I feel let down by my body.
I feel let down by my gp who told me to just take painkillers for my aches and pains. I’m scared that the RIBOCICLIB will make me feel ill, and/or that it won’t do any good.
I feel guilty that I’m leaving my parents, husband and step son earlier than expected.
Is it ok to not feel like I should be doing something amazing everyday and just ‘be’?
I hate that I have these thoughts and I really try not to. This really is just a thoughts dump and I’m sorry for sounding depressing. Just not sure how to come to terms with it all...if that’s even possible