68067members
401online
358292posts
Turn on suggestions
Auto-suggest helps you quickly narrow down your search results by suggesting possible matches as you type.
Showing results for
- Home
- :
- About Mermaid007
Mermaid007
Member
since
16-01-2015
144
Posts
37
Hugs
2 weeks ago
1 Hug
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
15-08-2020
01:11
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
15-08-2020
01:47
Just throwing this question out there.... if you have Liver and Bone mets for example, is it possible the treatment is keeping the liver mets under control but the bone mets are progressing? Or vice versa. Or... If one area of mets is progressing then the other area definitely will be too. grateful for your thoughts on this x
... View more
14-08-2020
12:19
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
12-07-2020
10:03
1 Hug
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
13-05-2020
10:02
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
09-05-2020
07:46
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
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
... View more
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
... View more
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
... View more
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
... View more
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
... View more
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
... View more
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
... View more
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
... View more
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
... View more
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
... View more
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
... View more
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
... View more
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
... View more
