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Mermaid007
Member
since
16-01-2015
139
Posts
35
Hugs
2 weeks ago
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
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3 weeks ago
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.
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04-03-2020
07:20
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
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26-02-2020
09:10
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
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12-02-2020
12:16
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
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11-02-2020
11:24
1 Hug
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
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10-02-2020
02:11
1 Hug
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
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18-01-2020
01:11
1 Hug
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
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12-01-2020
08:26
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
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02-01-2020
08:16
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
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31-12-2019
02:20
1 Hug
Hello, I was diagnosed with extensive mets to bones 5 years ago. They are everywhere including skull. Apart from one vertebrae which collapsed ( I had Vertebroplasty to rebuild it) I can say they haven’t given me much trouble. I work, travel, socialise. You have have every reason to be hopeful. Lets hope this new decade is good for us all xxx
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28-12-2019
08:09
Hi there, I'm on Abemaciclib and Faslodex and have IBS. Ive found Peptobismal ( known as The Big Pink) a game changer. It’s helped me so much. I feel like it coats the intestines and soothes. Worth a try if you’re suffering xxx
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14-12-2019
12:05
10 Hugs
Hi everyone, I haven’t posted on here for a while, needed a little break. However I wanted to share with you that it’s my 5 year anniversary with secondary breast cancer! My primary was in 1998 and 5 years ago turned up very extensively in my bones... a shock to say the least after so long in the clear. I was 3 and half years bones only then 2 small mets showed up in the liver 18 months ago. Im posting this to give hope to those newly diagnosed with secondaries. I remember so clearly the pit of despair in the beginning and how I clung to the posts on here of ladies who were 2 or 3 or more years down the line. My advice? DONT READ THE STATISTICS! However do try and keep up with all treatments/ trials that are available to us in the UK. Due to NHS budgets etc we aren’t always offered what is available. Don’t be afraid to challenge your Oncologist and fight for meds you feel you should be offered even if it means changing hospitals ( I speak from experience) they are looking after many patients... YOU ARE LOOKING AFTER YOU! Try to enjoy something each day don’t let this bloody disease consume your every thought. I hope this post helps somebody to believe there is still life to be lived! Wishing us all a Merry Christmas Debs xxx
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25-10-2019
10:10
2 Hugs
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
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18-10-2019
12:35
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
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05-10-2019
03:27
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
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05-10-2019
03:21
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
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05-10-2019
03:07
6 Hugs
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
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25-08-2019
06:34
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
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15-08-2019
09:36
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
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