Breast Cancer Care Forum

Hi there, When I was diagnosed with mets 5 years ago I decided to only tell a few people. My work manager as I knew I would need time off for hospital appointments, plus a handful of very close friends. My very elderly mother and my two young adult children still don’t know and neither do my work colleagues. My treatment so far has been hormonal and I’ve continued to lead a normal life. I work and travel and socialise. ( I have mets  to bone and liver). When I have to go onto a treatment that has more side effects I will tell them then. I feel I am in the minority with my choice but just wanted you to know it’s up to you who you do and don’t tell. You will know when the time is right, be it next week or in 5 years xxx ... View more

Hi, just wondering how everyone is doing on this combo. As I mentioned previously I had to reduce from 150 to 50 and have felt fine. My Oncologist has just upped me to 100 and have to admit the tiredness is debilitating. Slept for 12 hours the other night and could have carried on. Admittedly it was the day after Faslodex/Denosumab so maybe it will get better in a few days. Tummy issues getting worse too. I was really good on just 50mg twice a day but I’m guessing it doesn’t work as well on the low dose?    Debs  ... View more

Hi Bev, im on the same treatment along with Denosumab. my primary was in 1999 and then can back 5 years ago in bone and a year ago in liver. I’ve been on Faslodex the last year and 2 months ago we added Abemaciclib. I started on the 150mg dose twice a day but came out in a terrible allergic rash. I’ve been on the reduced dose of 50mg twice a day which has been great and we’re about to try the 100mg twice a day to see if I can tolerate it. Tummy fine on 50 but was bad on 150. lets hope it works well for us both x ... View more

I’m sorry but your husband needs to be more understanding, you are going through physical and emotional trauma. DO NOT participate if it’s painful. There are other ways to “relieve him” if necessary. DO NOT participate even if you can get soothing cream if you aren't feeling emotionally available, feeling tired nauseous got bone pain etc  I suspect given that you say he “ still has needs” that he is requesting sex even though he knows what you are going through! “in sickness and in health” were your vows  Please put yourself first, I’m sure you are a wonderful wife and always have been but men can be so childish when it comes to this issue. xxx   ... View more

Hi there, I really feel there is still such a big stigma around secondary breast cancer, and it’s not talked about enough. Deborah James ( also known as bowelbabe) is doing a fab job on instagram etc talking about her secondary bowel cancer.  My secondarys ( bone/ liver) showed up 16 years after my primary but I have told very few people because I know how people react. The pitying looks and the insensitive questions “ how long have you got ?” FFS! If somebody is diagnosed with primary BC these days it seems like you are turned into a pink fluffy heroine warrior! If I meet somebody diagnosed with a primary I tell them that I too had it many years ago, but I don’t mention it came back because it obviously fills them with fear. However, I should be telling them, women need to know that the “5 years all clear” is not necessarily so! oh I could go on rant over basically I get what you’re saying x ... View more

Hi, I was on faslodex for 9 months prior to adding Abemaciclib to the mix. I can confirm that , for me at least, it’s the Abemaciclib causing fatigue. I felt fine on Faslodex alone. Still, hopefully the addition of Abemaciclib will give us longer on the Faslodex which I think is easy to tolerate. good luck x ... View more

Hi Turtle, I too was 16 years clear before secondary found in bones and a few spots in liver. I’m nearly 5 years now with secondary’s so take heart, there are lots of new drugs out there now that weren’t available even 5 years ago such as the drug combo you are on.  I remember when I had my primary diagnosis my little girl was only 1yrs old. I didn’t think I would see her start school. Last month I watched her graduate from University!  So we still have a lot of living to do... xxx ... View more

Long may you continue to inspire us Nicky xxx ... View more

Hi, I’m also on this combo. I started on 150mg twice a day but on day 14 I came out in a horrible rash all over my body only my face was spared. White cell count low and bad tummy. I am now on the lowest dose 50mg twice a day and so far so good... been a month now. When I see my oncologist in 2 weeks he will see about upping me to 100mg to see if I can tolerate that level. I seem to be loosing hair, nothing dramatic but a fair bit every brush or wash. Have you found this?  Hope it works well for us x ... View more

Hi, I have bone Mets all over the place including skull. Have to say the skull Mets bothered me the most psychologically but have never given me any trouble and no oncologist has worried about them any more than than other bone Mets. I’m coming up to 5 years now ( also have a little met to liver) and doing ok.  Hope this helps  take care x ... View more

Hi, I would say definitely have the Denosumab and probably stop the Exemestane. It will clear out of your system ready for the new treatment. Just a thought but as you are only just starting your second line of treatment, NICE have now approved Abemaciclib ( Verzinio) which is a CDK 4/6 inhibitor ( basically stops cancer cells multiplying) and this is given with Faslodex. Abemaciclib is a tablet twice a day ( it’s not chemo) and Faslodex is a hormone injection in each buttock once every 4 weeks. I’m now on this treatment. I too responded well to Exemestane ( 3 and half years). So given you responded well to a hormonal I would be interested in this before chemo. Worth asking about anyway. your holiday sounds wonderful... enjoy x ... View more

Hi Mo, sorry you have had to leave Cape so soon as I had heard it works well on Liver mets. I would have queried staying on a bit longer as your small mets were stable... however the side effects didn’t sound good at all. I know very little about Epirubicin but I hope it works well for you.  I haven’t been to a BCC meeting but would certainly be interested in the future, is the info on this site? Had my first bout of Big D on Saturday but manageable since. Fatigue quite bad. Will carry on and see how I go. It’s always trying to find the balance of efficiency/ side effects.  It is exhausting Mo mentally and physically and some days I feel very strong and others definitely not so. I know my fuse is short these days and I don’t suffer fools gladly 😂  keep in touch  Debs xxx     ... View more

Ditto to everything said.... the oncologists are looking after hundreds of patient there is “ only me looking after me” ... it isn’t easy to question their opinions and it can be intimidating, but it’s only by being educated and informed about our diagnosis that we can challenge them. Ask for second opinions, change oncologists, change hospitals... do whatever is necessary to get what you need. God knows we shouldn’t have to do this on top of everything we are going through but it’s the nature of the NHS, they are underfunded and understaffed. However I have found that “if I ask... I get” . xxx ... View more

Hi Mo Hope you are ok. Is it Cape you are on now? Is it ok? I just posted to Nicky so you will see I’ve just started Abemaciclib ( Verzinio) alongside Faslodex. Waiting anxiously to see if the side effects are manageable. take care Deb x ... View more

Hi Nicky, Sorry to hear you are having to change treatment but hope Eribulin works well. My recent scan was stable and by chance saw a different oncologist who I really liked. He was upbeat and proactive. I queried about having RFA to the liver. He said that as I was responding well to Faslodex and the liver met is small to leave alone at the moment. If one of my scans shows stable bone mets but the liver met goes rogue then we will stay on Faslodex but RFA the liver met. I reckon that sounds like a decent plan. He has also started me on Abemaciclib (Verzinio) which has just been approved for 2nd line of treatment. I’m on day 3 and armed to the hilt with Imodium and rehydration powder and soft loo roll as the main side effect is the BIG D 😟. Usually starts around day 6 apparantly so looks like a good weekend for me 😖.  Take care Deb x ... View more

Hi, Ive had acid reflux for years even before secondary diagnosis. I have Lanzaprosole on prescription and it’s been a miracle for me. I take one capsule in the morning. X ... View more

Hi there, Ive had something similar. Four years ago I was diagnosed with bone mets 16 years after my primary. My L5 vertebrae had collapsed and I had a procedure called Vertebroplasty via ct scan where they took a biopsy then filled the collapsed vertebrae with cement. I was sedated but not a full GA. I was never in pain and the recovery time was a few weeks but mainly stiffness in the lower back. I took Exemestane  fir 3 years and am now on Faslodex after a progression. You have every reason to be optimistic, there are many treatments out there and bone mets very treatable. let us know how you get on x ... View more

Hi, ive been on Faslodex for 9 months and have hardly any side effects. We are adding Abemaciclib to the mix. I’m concerned about the tummy side effects. Has it continued to be ok for you? Thanks  Debs ... View more

Hello Sue, I had my scan results today and am thankfully stable. I’ve been having Faslodex for 9 months. After a long discussion my oncologist has agreed to add Abemaciclib. How are you tolerating it? Have you had many tummy issues?  Regards Debs   ... View more

Hi there, I too know how you are feeling. I had 3 and half years on Exemestane and found it an easy hormonal and kind of just got on with life. So like you was totally floored with the dreaded progression. For the last 9 months I’ve been on monthly Faslodex injections, a different kind  of hormonal and have got consultant appt tomorrow to have results of latest ct scan ( I’ve got bone and liver mets). If there is progression I’m thinking xeloda chemo tablets will be my next treatment. There are so many good treatments that unfortunately we don’t have access to on NHS at the moment or because we are not on our first line of treatment. They are currently looking at Ibrance being available to patients who have had more than one line of treatment in the metastatic setting ( currently only given if newly diagnosed stage 4) also looking at Abemaciclib in combination with Faslodex ... the go ahead for that may be this year. I will be grilling my poor Oncologist about all of this tomorrow. Xxx ... View more