AFINITOR SISTERS

[MyMiracle13]

Hello, I will be starting Afinitor and Aromasin this weekend. I hope those of you on this regimen can help me b sharing your experiences. I am starting on 5mg for afinitor because my MO wants to observe if there are any side effects I can’t handle. For those who are on this combo or have finished this combo, did you take the afinitor in the morning or evening?

Hope this works wonders for my liver Mets.

Maria

[Silver126]

hello I was on this combo for two months and I took both pills every night at about 10.30 before going to bed (Afinitor 10 mg +Aromasin). I had no particular problems apart from peeling palms. Be careful with your mouth, I didn’t get any damage because at my cancer centre they prepare and provide patients with a cortisone-based mouthwash which worked very well with me and the others.

[MyMiracle13 in reply to Silver126]

Thanks for replying. Yes it’s the mouth sores I am worried about. May I ask why you were on this combo for only 2 months? I guess it’s best to take them before bed.

[Silver126 in reply to MyMiracle13]

PET scans alt the end of June showed increased activity and one new met in liver so I stopped Xeloda. Then I had liver biopsy, PIK3CA and BRCA tests. I started this combo on August 8th after I stayed without therapy one month and a half and I couldn’t repeat PET of course, too close to the last! In October new PET scans showed again higher activity in liver so we switched to Caelyx. The onc told me that Afinitor didn’t work well, but he couldn’t exclude it was starting to work. I should have had a PET dated August, not June to make a correction comparison. Anyway, he didn’t want to run any risk, so I’m now on this IV chemo. .. He told me my situation is not so common because the biopsy in July showed again 90% hr + 45% pr +. But I’m resistant to anti hormonal treatments…

[MyMiracle13 in reply to Silver126]

Thanks for sharing your experience. Your situation does seem complicated. I have extensive liver Mets and I also have the PIK3CA mutation. I hope the IV chemo is working for you.

[Silver126 in reply to MyMiracle13]

They would have suggested me Alpelisib if I had had this mutation. Is your onc considering it?

[MyMiracle13 in reply to Silver126]

Yes my onc is considering it, But some say that the side effects of Piqray are worse than the Afinitor/Aromasin combo so we opted for this combo first.

[Pbsoup in reply to Silver126]

Interesting. It didn't seem have a lot of time to work--is it one of those drugs that tends to show results quickly? My Xeloda is starting to wane so am looking at options and A/A is on my list (although not on my MO's for some reason...not sure why).

I suppose your resistance to hormonal treatments is a factor. How do you know you have that resistance?

[Silver126 in reply to Pbsoup]

Ribociclib and letrozole lasted only fifteen months… When this or other “ib” combo quits working it means that our body has developed resistance to hormonal treatments. That’s what my onc said. In particular I stayed Ned in breast, one bone lesions, but I developed liver Mets. Combo A/A is quite old and it worked very well as first line or after letrozole or IV chemo. Today it’s used as second or third anti ormonal line and I read of many experiences similar to mine, because our body has already developed resistance. There are of course many positive experiences as well!

[LibraryGeek]

Hi Maria,

Just wanted to wish you good luck on this combo- I was meant to be trying it but then went on a clinical trial instead and when that failed was put on Capecitabine (Xeloda) instead. Was following the Facebook group and some ladies on there had very good results so fingers crossed. I am really liking Cape- manageable side effects and first scan since taking was good.

Sending good wishes, Jackie x

[MyMiracle13 in reply to LibraryGeek]

thanks for your good wishes. I do hope this combo works because I am running out of oral options. I want to delay IV chemo as long as possible. I liked being on Xeloda. It worked for me for 2 years with no side effects. Pity I had to move on.

[13plus in reply to LibraryGeek]

That's great to hear the side effects are manageable. I am sure I'll be on this drug too at some point in the future, it has already been discussed as further down the line for me

[24681]

Hi, I’m on afinitor 10mg and Aromasin since may of this year. First 2 months had mouth sores but the magic mouth wash was a big help! Then they just stopped. I just had a pet scan because I was coughing and my back hurt, I have what they call ground glass opacities. This was a side affect of the pill. My onc put me on prednisone for 7 days and thank the lord it cleared. I am now back on at 5mg, he will eventually put me back to the 10mg., but will take X-rays of my lungs while I’m on it. We are pleased with how it’s shrinking my cancerous nodes in my neck. So I’ll stick with it!

Hope all goes well for you. Xo Rosemary

[13plus in reply to 24681]

I am so glad the prednisone cleared that issue up for you! I had thought it was irreversible so that's reassuring to hear. Perhaps because he caught it quickly? I will probably be starting on this drug soon too

[MyMiracle13]

Thanks for replying, Rosemary. I hope this combo works for me with minimal side effects. I’m starting on 5mg and hopefully work my way up if side effects are manageable.