Breast Cancer Now Forum

Hiya, I would ask your oncologist the following question: if you go onto the trial and you either have to stop because of side effects or further progression, can you then go onto Evorilimus/ Exemestane? if the answer is yes then I would definitely go on the trial first. The E/E treatment is always going to be there but fitting the right criteria for a trial is a “ window of opportunity “. Deciding on new treatment is never easy and we all fear the side effects ( I’m just about to start Cape).  You can come off the trial at ant time but who knows it might work wonders for you  xxxx Debs ... View more

Hi, I had glandular fever when I was 15yrs old and it was years before I really felt back to my old self. I was diagnosed with Breast Cancer  aged 39 ( I’m now 60) and was the first one in the family. During treatment I became close friends with another lady who I still see, and found out that she too had glandular fever as a teenager. My cancer returned over 6 years ago to bones and 3 years ago to liver. I wonder if the glandular fever was the start. Debs xxx ... View more

Hi, I had the Oxford Astra Zeneca and had sore arm and a headache but all good after a few days xxx ... View more

Hello, Ive been having Faslodex for over 2 years now and Abemaciclib was added 18 months ago. The Faslodex did make me a bit nauseous the first few rounds but following that I’ve had no problems. The Abemaciclib however did cause me a lot of tummy issues until we reduced the dose twice. I’m on the lowest dose but still continue to have stable scans. I’ve got extensive bone mets and a couple of small liver mets. I hope you get along well with the treatment as I think these combination drugs are really good.  Lots of love x ... View more

Hi there, I have been on Abemaciclib for a year and due to bad tummy issues am on the lowest dose which is 100mg (50 mg twice a day) my liver mets decreased in size and now remain stable. Even on this low dose I still had tummy issues. I searched the internet and found something called “Fodmap” diet. ( FODMAP stands for fermentable oligosaccharides, disaccharides, monosaccharides and polyols , which are short-chain carbohydrates (sugars) that the small intestine absorbs poorly. It’s used for people with IBS. It’s not a diet as such but really is the science of food. So in a nutshell certain foods ferment differently in our tummy creating gas and diahorrea and bloating if you have that sort of sensitive system.  I eliminated foods high in fodmap and it’s been a real game changer. For example apples and ripe bananas are high in fodmap but strawberries blueberries are low in fodmap.  Worth a look  hope it helps    Deb x   ... View more

Hi Nicky, Lovely to hear from you. My last few Ct Scans have been stable, however the last 2 months I’ve had a lot more back pain. I’ve been working from home on a dining chair due to covid and my oncologist thinks that could be why. He ordered another CT which I’m waiting for results on. I think he wants to check on the liver more than the bones. Hence my query. I’ve now got a proper chair for working which has helped a bit. Considering I have bone mets everywhere they don’t usually cause me much discomfort which is why I’m a bit concerned now. I’m taking Faslodex and Verzinio and would like it to work a bit longer. will let you know and thanks for replying. Hope all stable with you xxx ... View more

Hi Stoney, I have had bone mets for 5 and half years now ( few liver mets showed up 2 years ago too) I’m on my second line of treatment. Exemestane for 3 and half years and Faslodex with Verzinio the last 2 years. Also have Denosumab.  you have every reason to be hopeful with your diagnosis and who knows what treatment will become available to you in the next five years. xxx ... View more

Hi,I’ve been on fulverestant a couple of years now and always have funky smelling urine for a couple of days after jabs, bit like when I eat asparagus 😁 it’s normal don’t worry x ... View more

Hello Mo, lovely to hear from you. Glad you are keeping well. I’m doing as well as can be. The Abemaciclib that I take causes a lot of tummy issues for me but apart from that it’s ok and keeping me stable. Nicky thanks for your thoughts, I think I will meet my oncologist halfway and ask for one at 4 months, it makes me too nervous with Liver mets to go 6 months without a scan. My tumour markers are no good as they always read as normal, and I have no symptoms from the liver mets so a CT scan is the only way to know what’s happening.  Stay well everybody xxx ... View more

Hi Nicky, I haven’t been on here for a while but lovely to see how much you still contribute to the forum and that you are keeping well. I  am currently on Abemaciclib and Faslodex just had CT results which showed liver mets stable. Oncologist wants me to have another CT in 6 months. I note you ensure you have them every 3 months. Onc says he has to weigh it up against putting too much Radioactive stuff into my system with more regular CT scans. What do you think about that? I would appreciate your thoughts.   ... View more

Hi there, I think I stayed overnight as it was the hospitals policy ( Royal Orthopaedic Birmingham). However I would have been ok to go home on the same day. Good luck with the procedure x ... View more

Hi I had Vertebroplasty which is the same. I had collapsed L5 and was in agony. The procedure was painless ( I was sedated) and I had one night in hospital. I was really pleased with the result as was pain free. i wouldn’t hesitate to have it x ... View more

Hi Janette, Im taking  Faslodex Denosumab and Abemaciclib so a similar regime. I’ve continued to work but have just taken partial retirement so down to 3 days a week. It’s an office environment. I think as long as we feel well enough to work and we want to then we should! I think what most of us crave is a sense of normality and not so much free time that we get “ inside our heads” too much. It’s about balance. Hopefully we will all be “ living” with this disease for a long time. Xxx ... View more

Hi Lollypop, It’s much too early for you to start to get your head around it. Unfortunately there’s no way around what you feel now, all of us on here have been there. It’s absolutely horrible and I remember it well. What I can assure you, as others told me on here at the time, it does get easier. Stay strong 💪 you got this! X ... View more

Hi Lollypop, My extensive bone mets were found 5 years ago ( 16 years after my primary) I’m doing really well. I started off on Exemestane and Denosumab then had a progression and went on to Faslodex. When the new drugs became available they added Abemaciclib to the mix. So 5 years down the road and only on second line of treatment. The new drugs like palbociclib weren’t even available to us 5 years ago. So our aim is to get as long as we can out of each drug and then new ones come along.  The most difficult think is “The Mind” and we all go to dark places but once your treatment kicks in and you start getting a few good scan results it soon becomes a bit easier ... the new normal. Nobody knows how long they have left including the seemingly healthy people. In fact I’ve lost a cousin and a colleague who on paper should have outlived me for sure. All any person on the planet has is “now”... this moment this minute.  I’ve been trying to make this my mantra and enjoy each little moment of every day. Everybody should be doing this not just those with cancer as nobody can know how long they have.  I hope this helps a bit dear lollypop xxx ... View more

Hi Janette, sorry to hear your news and I understand it feels like a big step backwards. I had 3 and half years with just bones and convinced myself it would stay there. Had total meltdown when it arrived in the liver but once again a new treatment starts and it all becomes the new normal. I have found fulvestrant an easy treatment to be on and that kept my liver mets stable then when it became available last year added Abemaciclib to the mix ( this is one of the new targeted drugs like your ribociclib and also palbociclib... apologies for probable incorrect spelling). I’ve just had my first CT scan and the addition of the new drug has actually shrunk the little uggers in my liver. My oncologist was so pleased as I’m also on the lowest dose.  Good luck with the new treatment xxx ... View more

Hi Janette, I had bone mets 2014 which was 16 years after primary. I took Exemestane for 3 and half years then had progression in bones plus 2 small liver mets. I went into Faslodex and remained stable then 6 months ago we also added Abemaciclib ( Verzinio) to the mix and just had my latest CT results which showed the liver mets had shrunk. So this seems to be a good combo to be on if your scan confirms liver mets. If it is showing up as likely mets, ask for a biopsy to confirm.  Xxx ... View more

Hi, Yes I was on Exemestane for 3 and half years then Faslodex for a year then added Verzinio to the Faslodex about 6 months ago. I also have a Denosumab injection every month to strengthen bones.  Im strongly ER positive HER negative.   xx ... View more