Hi Mermaid 007
i had been taking Abemaclib for two years with Letrozole and then tumours appeared in my chest. They could not biopsy so I paid to speak to Professor Johnston at the Royal Marsden. He suggested the Garden 360 which would look at the mutation of the cancer. We had that done and it specified that I had three mutations. He then recommended Alpelisib with Fulvestrant injections once a month. I started this therapy a week ago so will wait for PET scan in 4 months to know if I am responding.
hope this helps
Just wanted to ask about the Guardant 360. I understand that this has to be paid for privately at the moment. However, when it shows specific mutations are we still limited by the Nice/NHS guidelines as to what we can and can’t have?
Example... I started stage 4 by having Exemestane. One of the drugs I haven’t trued is Afinitor ( evorilimus). As this is only given in the UK in combo with Exemestane I am unable to receive it as I have already had Exemestane!
Ive also had targeted Abemaciclib with Faslodex so I am now not eligible for Palbociclib.
Just wondered if you have come across this problem. Is it just my NHS Trust or is it nationwide?
Hello. Yes I had two tumours in lungs that were secondaries and I've been in Abemaciclib for two years but then more popped up. I had a blood test at the Marsden - Gardant 360 which showed three mutations and I am now on specific targeted therapy for that. The blood test is not licensed by Nice on NHS. But should be next year. I didn't have the time as they couldn't biopsy me and would be trying different targeted therapies so we paid. I'm just hoping now the new meds work ????? Good luck xx
Just like to thank you for your response.I shall ask questions neck time I see my Onicoligist which will be the 15th August.This will be the date my scan report will be talked about.
In reply to your question I'm no expert, I've just learnt (and made myself learn) about the treatments along the way. Because I've had so many different ones in my 11 years of mets I guess I've researched quite a bit!
I think you should ask your oncologist why they are suggesting a certain type of chemo as opposed to an oral one. The one thing I do remember though is that some chemo's are not prescribed unless you have had a previous type beforehand. This I think is due to the trial conditions when the drugs are first tested out. This is the case of Eribulin which can't be prescribed unless you've had at least one (different) type of chemo beforehand (or this was the case when I had it back in 2017). I have a feeling this might also be the case with Capecitabine but, again, criteria may have changed since I had it back in 2013. Having said that it doesn't mean it wouldn't be an option at some point.
I know this might not help that much but that's one of the things I have been aware of when I have had different treatments especially chemo's. I've also learnt that not all oncologists go down a particular route regarding treatment, some choose one type of chemo over another which can be based on their own observations. As we, as patients, aren't all exactly the same it's not surprising that we don't all follow the same treatment plan.
As I said earlier though I would ask your oncologist and they should be able to explain why they have chosen a particular treatment and you should tell them your worries, hopefully they can help you with them.
you seem to know a lot about this awful disease.
I was diagnosed in April this year.Have been on Palbociclib and Letrozole.But have been told 1liver met getting bigger ,and the other Seven Shrinking,also have bone mets,spine,hips pelvis, lesion on bone met getting bigger,given me one more cycle on treatment ,then chemo,
Onicoligist says EC chemotherapy,never asked enough questions was in shock,as I feel great.Can you tell me why onicoligist has recommended this and not oral chemotherapy.Also is this the last treatment I can get,or have I got a chance at living just a little longer.
I have had the dreaded diarrhea and have been more tired. Also lost my appetite but I can cope with these side effects, just hope this combination works. I see my onc next Wednesday before starting my second month of Abemaciclib.
Glad to hear that your results are stable.
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?
Just wanted to let you know that the combination of Abemaciclib and Faslodex is available now. I think it was approved as part of the Cancer Drugs Fund and I started it three weeks ago after other treatments had stopped working. I hope your appointment goes well today.
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.
Hi imac, I remember your posts from all those years ago. I know exactly what you mean about feeling invincible, I always said I got lulled into a false sense of security when I also responded well to hormonal treatment for the initial 4 and a bit years of having mets. When you eventually hear those words ‘progression’ it completely floors you, just like the initial diagnosis of mets did. However, as I’m sure you did with your secondary diagnosis you will pick yourself off and get on with living, after a period of adjustment.
When my bone mets spread to my liver in 2013 I had been on anastrozole for nearly 5 years, I then went onto Capecitabine, which (as mo has said) is what it sounds you also will be doing. Although your oncologist seems to have said that your SBC has changed it most likely means it has adapted to the treatment so the treatment no longer works effectively, it doesn’t necessarily mean no hormonals will work again. I have had similar where you have a chemo, which luckily has given me long periods of stability/shrinkage followed by hormonal treatment to keep things stable.
As mo has said check out the Xeloda/Capecitabine thread, it’s always quite active as there’s usually quite a few ladies posting who are either on it now or can offer their experiences from when they were on it. The main things I found was that it took my body a few cycles to adjust to having this chemo (not surprising after 4-5 years of no chemo) so I had a dose reduction (something to know you can do, and many of us do to lessen the side effects) plus moisturise hands and feet well as almost all of us on this treatment get the dreaded hand and foot syndrome. As to insurance you should be able to get insurance either a new company or the existing one may still cover you. The only thing to check is their wording regarding being stable as that tends to be one of the criteria, but some companies don’t ask this and just insist you are fit to travel.
Hope this helps
I have no helpful advice here as I don’t know your details, but I do sympathise with the shock after several years of boring stability! I had begun to feel I was invincible too. I just thought I’d suggest that if you are moving on to tablets it sounds like capecitabine which I am now on after herceptin failed for me. There is a dedicated cape ( also called xeloda) thread here if you are going in that direction where you will be ‘welcomed’ and find very helpful advice and support. This is a strange journey. A learning curve. I think there is a thread about insurance and breast cancer too. Of course if you are on tablets you should be more free to travel than on IV.
all the best and do use the threads to your advantage. Browse! And let us know how you get on.
Not been on for a while, trying to live my life, almost 4 yrs into secondary diagnosis. I take exemestane as a hormone blocker for my lung met, and denosumab for my pelvis bone met.
Sadly the lung tumour, after yrs of shrinking is growing and has doubled in size since last scan. It was a bit of a shock as I was beginning to feel invincible! Doc thinks it's mutated. He's getting a 2nd opinion but is pretty sure, and has said the next step is to offer me chemo tablets. I know nothing about this type of treatment. I'm reeling a bit, and feel very negative which is unlike me. Started thinking about how I'll die in pain and uncomfortable, and where I'll be buried etc. But really just want to get on with life. I'm booked onto a tall ship sailing trip and also worried I'll have to inform the insurance company of my new health development. Any advice welcome.