Afinitor/Everolimus and Tamoxifen is next :(

[13plus]

Hi everyone - it's time for me to change treatment again.

Well my time on the Hope trial was pretty short-lived (December to June with pretty much progression showing for 1/2 that time) and now officially over. I'm ok with ending the trial because the travel out of State, and insurance issues were becoming too much to bear. But I am NOT looking forward to starting on the Afinitor.

The only good news is that my onc is starting me on the 5 mg dose (vs. 10mg). I teach on Zoom so I'm reallyworried about the effects on my skin and redness, the mouth sores, and well, all of it. Most of my clients don't know of my health concerns. And of course I'm worried that it will not work. Please share your good and not-so-good experiences with me?

1st treatment after mets dx (and only bone mets except a tiny liver spot) was iBrance 75 mg/Faslodex/xgeva for nearly 3 years (liver resolved itself). 2nd treatment line was Lynparza/Xgeva for about a year - then I got multiple liver mets appear (and yes I'm getting the Guardant360 test done within a month as we wonder if the cancer changed). 3rd line was HOPE trial with combo of Faslodex/Lynparza/iBrance - first the liver progressed, then liver and bone mets progressed. Now I start Tamoxifen with Afinitor 🤞🤞🤞 I am really, really hoping I'm one of those who don't get too bad a time on this regimen, yet it seems that most DO have a fairly challenging time?

[Guitarbella]

Dear 13 plus.After 21 months on Palbocilib & Letrazole,multiple liver mets were found so I changed to 18 weekly sessions of Paclitaxel .This stabilised things so I have niw had 2 cycles of Afinitor 5mg( Everolimus) & Examestane. Side effects manageable,mainly very sore mouth with ulcers but had mouthwashes & special gels which helped. Skin itchy & sore & light rash which was helped by using a moisturiser called MooGoo. ( I am in UK) I also found a good F50 sunscreen helped & avoiding sitting out too long.

About to start 10mg dose of Afinitor today, so I am very anxious about more or worse side effects but trust my team will help.

Hope things go well for you, we are all different & side effects are scary but they may not happen. Well that’s what I keep telling myself !

Take care c

[13plus in reply to Guitarbella]

Hi Guitarbelle, thank you for your support! Good luck to you too starting on the higher dose. I understand your nervousness about that. My doctor also mentioned going higher if I tolerate the 5 mg ok. THat's something I dont really understand about hte cancer treatemtns though, how they always push for going higher. I htough I read something recently about 5 mg being just as effective but I flew over it and didn't really take it in. I may try looking to see if I can find that again, or it might have just been a comment somewhere?

[LibraryGeek]

Hi 13plus,

I am also in the UK and have bone, liver and lung mets after 5+ years. I have been on Exemestane and Everolimus for 12 weeks and will have my first CT scan on this treatment on Friday. I am on 7.5mg. I had some tongue and mouth problems early on but they are more or less gone now- salt/bicarbonate of soda mouthwashes are helpful as well as the prescription stuff. I do get acne-like spots from time to time but again this has improved over time and they can be covered with makeup- mine are like those I had as a teenager- I am 62 now!!

My most problematic issue has been high blood sugar which has now kicked in at diabetic levels so I have started taking Metformin. The upside of this is that there is some thinking that in itself this can help to fight cancer. (Not well researched but I did find a study in one medical journal.)

Overall I am not feeling too bad on this combo and pray it is working and that I will be able to continue. My next treatment will probably be Taxol which I am dreading, unless I have the PIK3 mutation in which case I can possibly try Piqray.

Hope you do well and that it works for you.

Jackie x

[13plus]

Hi library geek, I think I saw your comment about the high blood sugar on another post. Ugh, I don't like to hear about drugs interferring with the balance of these things I've heard that about Metformin. There are quite a few people who follow "Jane's Protocol", who is a rogue nurse dispensing advice. So some who have no blood sugar levels take it for its supposed cancer-fighting ability (along with a lot of other off-script drugs). I'm not sure I buy into all that but we can hope there's some truth to it now you're on it

Yes I'm not looking forward to the mouth sores, and we will have to change our meal preferences around here - we like some spice! Does the mouthwash have an awful taste? That's what I gather, so I hope it's not by itself nauseating.

I really hope your scans show a great response this week! Keep us posted? I've been told maybe Xeloda if this doesnt work, pill chemo. I've been on Taxols in the past, before my mets dx, so I hope to avoid them going forward. I hear you! Best wishes

[Hazelgreen]

I, too, wish you luck with your new regimen. I'm interested in Afinitor being combined with tamoxifen. Is that the usual combination? Is it sometimes combined with an anti-estrogen like letrozole?

[13plus in reply to Hazelgreen]

Hi, thank you I don't know that it's a usual combo but really any anti-estrogen that works a similar way I think is ok. One of my docs had mentioned exemestane as another possibility, way back when we were looking far ahead at options to come, but she always leant towards Tamoxifen. In more recent discussions the docs at both hospitals looked at the time I'd spent on each estrogen-related drug over my whole cancer journey to determine that they thought a revisit to Tamoxifen was worth a shot. I think perhaps the manufacturer's of Afinitor though studied it originally with Exemestane? Maybe that's why we see that combo mentioned a lot

[Eliactida1955]

I started on affinitor and Everolimus and stayed on it for about 10 months and it didn’t work. I felt terrible nauseous and just weak. Everyone is different and could work well with you but I ended up with a pace maker that my onc thought affinitor caused it. We changed now on xeloda and we will see. I also started on the low dose but basically stayed there. I’m sure you will find out if working my first treatment was ibrance and letrozole which worked three years. Hang in there.I wish you the bes🙏✝️🌹

[13plus]

Hi, thank you, and thanks for sharing your experience. I'm sorry to hear you had to get a pacemaker! Eek, I bet that was unexpected. I wish you well going ahead with the Xeloda!

[Aquamoron]

Hi 13plus. I’m in a similar boat, having just switched from ibrance/faslodex/xgeva to Lynparza/xgeva 6 weeks ago. Hoping that this will kick out the Mets in my liver.

Hoping you will tolerate and respond to your new line of treatment. S/e are an unfortunate byproduct of getting better, and everyone has different experiences. (Which is why this board is so awesome to do recon!)

Wishing you well.

[13plus in reply to Aquamoron]

Thank you! Wishing you success on the Lynparza too!