Progression - next possible treatment

[Sunnydrinking]

Good morning ladies

I’ve just checked on mumma hen and her two chicks 🐣🐣 all is well - they do get through their chick crumb and drink plenty....

Re. My progression, the letter arrived yesterday without the copies of my latest CT and MRI scan. However, the letter states the liver MRI has confirmed new liver mets unequivocally. I’m well in myself and my liver function test is fine and my tumour markers are stable.

I next see my Oncologist on Friday 24 July. In the meantime I am just continuing to take letrozole, and I had a Denosumab injection last week.

The next treatment is Everolimus and Exemestane or consideration for a possible clinical trial - EMERALD which I understand to be Elacestrant v standard treatment.

I am also still considering Genomic testing as wondered whether alpelisib may be a good treatment option but I haven’t been offered this.

Any comments would be welcome.

Happy Sunday.

Jo xx

[Barbteeth]

Morning Jo

I’m glad the feathered friends are well...soooo cute...we’re getting Vanessas chickens today...excited for her

I was in exactly the same situation as you in January....more liver mets so my oncologist gave me no choice and just prescribed the everolimus and exemastane ...I found the 10 mg dose of everolimus made me tired so after one month on that dose it was reduced to 7.5 mg which I found very manageable and my joint pain was much better....however this didn’t work for me so that’s why I’m now on faslodex injections and my markers have dropped as you know from my recent post

I was offered a trial but I didn’t want to do this and I’m glad I refused as Covid stopped the trial anyway

It’s finding what works for you....I found the everolimus/exemastane ok in terms of side effects once the dose was lowered and would have happily (!!) stayed on it if it had worked

I’ve just had the genome testing but no results yet...had to pay privately for it though but what the hell...it may be useful...if not I’ve just wasted some money....you may get funding or it may be free for you which would be good and I think you should do it

I’m sorry you have to change meds as it’s very worrying when you’ve got used to a treatment and it was working...fear of the unknown but you may be surprised and get a long time on the new one so don’t go by me...we’re all different

Good luck

Barb xx

[Sunnydrinking in reply to Barbteeth]

Hi Barb

How exciting getting the chickens today. I watch mine for hours. I got two hens back in 2010 when I was first diagnosed with breast cancer and had my bilateral mastectomy. They certainly took my mind off things .... How ironic that 2 chicks are helping me again as I face progression and a treatment change.

I’m taking one day at a time ......

Thanks for your reply and I hope that all continues to go well for you on your current treatment.

Enjoy the chickens and send a pic.

Jo xx

[Barbteeth in reply to Sunnydrinking]

I’ll definitely send a pic

Yes pets are so therapeutic

Good luck with everything

Barb xx

[Hidden]

Hi Jo,

It's so nice to hear that the hen and chicks are doing well. They must be a welcome distraction for what you are going through.

As far as genomic testing goes, I would definitely recommend it. Alpelisib is a targeted therapy option if you have the PIK3CA mutation (which I have). According to my oncologist, it is going through NICE at the moment and should be readily available for us in the UK by February 2021. So unless you have that particular mutation I don't think it will be an option for you. But it's worth finding out to be sure. I wish you well as you wait to see what happens next with your treatment.

Sophie

[MacroMom]

Hi Jo; I loved the photo of your hen with her surprise chicks. Made me think, “I may be an old hen too but I can still bring some beauty and life into the world!” (But very glad nobody has left an infant on my doorstep to care for!)

I have liver Mets too. Glad you got scans even though your blood labs looked good so you caught the progression early. I’d definitely recommend the genomic testing. I read recently that 40% of us have the gene that Alpelisib targets, and there is another drug coming down the pike that targets it also. We found out I had it when they tested the original tumor tissue. Now my onc wants to test my whole genome (I think it’s a blood test) just to see what else we might find.

Wishing you a peaceful Sunday too!

Patty

[Wanderluster]

Hello Jo!

Sorry to hear your news in regards to your liver. Any time my mets have shown on scans, my blood results and markers never indicate any abnormalities.

If you can afford it, I cannot recommend a thorough full genomic report enough!! I have had 2, from two different companies. They not only analysed my genomics, markers dna... they also tested multiple drugs on my tumor tissue.

Therefore I have a list of drugs which are not recommended due to my genetics, despite them being drugs that are typically given! Also it had shown that I do not metabolise Letrozole, which I been taking, therefore it would not work and I am genetically suited to Tamoxifen.

It cost £5000 but after having an initial diagnosis in 2017 at the age of 38, then growing a tumor whilst on standard HER2 treatment, and then mets found in the last 6 months the report has given me more information for myself and my oncologist to make decisions in regards to treatment.

Also my reports have shown that I am in the 30% in which Herceptin will not work!!! And it has not! If we would have know this early on things might have been different!

If you want any more details or questions you can message me directly I am in the UK in London.

Best,

Kelly

[Sunnydrinking]

Hi Sandra

Thanks for your helpful response. I did reply last night but I think I fell asleep before hitting send!

I was actually contacted yesterday and an appointment has been made for Thursday morning to discuss the trial in more detail and ascertain my suitability. This appointment is at Mount Vernon Hospital which is different to my usual Windsor Hospital.

If I knew I could get on to the trial drug, Elacestrant for sure, I’d be very keen to try it but concerned about the other arm of just standard hormone therapy. However, I’m sure I would be watched closely and if there was clear progression I would be stopped from the trial?....

I will try and get hold of all the pros & cons on Thursday.

I’m very keen to find out about mutation testing etc they may carry out and will not arrange my own private Genomic testing at this stage.

Thanks again, and if you think of any key questions I should be asking please let me know. This is all so very important ..... & I’m still quite scared of the future....

Thanks to everyone who has responded & helpedme so much. This forum is without doubt, the best help & support I could wish for. I was originally assigned a breast care nurse who left and I don’t really have anyone now who I can contact.

Jo x

[Teddielottie in reply to Sunnydrinking]

Good luck with whatever you decide is the best for you ! Glad you have help with it on here ! x

[Julie2233]

I was on that combination from September to December. I think it would have been ok if I hadn’t caught a very severe cold in October which knocked me sideways.

The combination made me quite tired and I lost loads of weight. Since my diagnosis all the drugs make me permanently hungry and it doesn’t matter how much I eat I still feel hungry. That stopped while I was on that combination and I lost a stone and a half without trying. Unfortunately it didn’t work for me.

[mariootsi]

Jo I wish you success with your new treatment.