Afinitor or clinical trial

[Wolverine19]

Hello everyone, I got the results back from my genomics test. The ibrance or possibly the faslodex is no longer working for me or my cancer is progressing now on that. I am advised that I have a mutation that would indicate afinitor is the best med. Or another option would be to go on a clinical trial. I cannot get in for an appointment until February 20th so I don't know details yet. I am a little nervous that the trial may fill up because it is supposed to start this spring. But it may be irrelevant if I just choose to go on afinitor. I have not heard the best things about afinitor so that makes me lean toward the clinical trial but it is really up in the air until I get more information. If any of you have any thoughts for me on that, I would appreciate hearing them. I am sending up a general prayer to bless everyone on this forum. We all help each other out. God bless you all!

[Barbteeth]

Hi there

Your story is the same as mine...I was offered a clinical trial or Afinitor with exemastane

I didn’t fancy going on a trial in case it didn’t work for me and let’s face it we don’t have time to mess about with uncertainty

Anyway I’m on my sixth week of 10 mg of Afinitor and like you I read the side effects which are awful...so far I’m just a bit more fatigued but also anaemic so it could be that

If I’m looking for side effects I suppose my skin is a bit drier...I’m using Elizabeth Arden 8 hour cream at night...it’s miraculous

I haven’t had a genome test so unlike you I’m just trying the second line of treatment...if I was you I would definitely take Afinitor if it’s shown to be effective for you’re type....the trial might be no good for you

Good luck

Barb xx

[Lovemylakie]

Good morning, I have been on Afinitor and Exemestane for 4 months. I too was worried about all the side effects but my only complaint has been the extreme fatigue.

My scan last month said my tumors are stable.

My best to you

Robin

[Selmac in reply to Lovemylakie]

Hi, Ibrance nor Faslodex worked for me either. Oncologist did a gene studied and advised Afinitor and Aromasin. Other than head and face sores I have done well on it. I've been on it a bit over 2 years. Slight improvement but no progression. I started on highest dose and just went down to 5 mg on Afinitor 6 months ago. If you have any specific questions feel free to ask.

Terry

[Wolverine19 in reply to Selmac]

Thank you Terry, when I first went on ibrance, I got a bad rash on my face the first couple months towards the end of the cycle. But then I got nothing the third month oh, I guess my body got used to that. So if I do decide to go the afinitor route and I develop a rash or bumps like you had, maybe it will clear up as well. Glad to hear overall you had a good experience with afinitor. Of course we would all like to go Ned, but just knowing that the cancer no longer progresses especially for that long period of time of 2 years is a really good thing. I will be anxious to meet with the geneticist on February 20th to make my decision. Thank you for this very interesting information that you submitted.

[mariootsi in reply to Wolverine19]

I think the 20th will help you with your decision along with your oncs advice.

[Wolverine19 in reply to Lovemylakie]

Hi Robin, good to know that that was your only real side effect, fatigue. I still kind of have that on the ibrance so I've kind of gotten used to the fatigue if that is really possible. I don't mind fatigue so much as if there I was in pain oh, I can cope with fatigue, just don't want any real unpleasant side effects. Thank you Robin.

[Andersl]

Is it a randomised trial? If so what drug would you be given if you were not given the mew drug being tested? Affinitor or something else?

What is the aim of the trial?

You should be able to get answers to the above quickly which may help you.

Xx

[Wolverine19 in reply to Andersl]

Thanks and Andersi, I will go to the clinic on the 20th and check on these answers.

[Julie2233]

Ibrance stopped working for me in the summer. I opted for afinitor. My oncologist wanted me to go straight on to pacitaxol but ageed a 3 month trial of the afinitor in the basis that it didn't work, progression wouldn't be so great to cause major problems.

Unfortunately, I had lots of side effects with the afinitor and the scan in December showed my bone mets were still stable but the liver met had doubled in size.

I was offered pacitazol or a place on a trial with cabazitaxel. I've taken the trial drug option and get my first scan at the end of the month so will see whether it's been effective. Though I have to say that that even though it's intravenous chemo, the treatment has been very easy so far.

If the trial drug isn't available to the Spring would it be worth trying the afinitor in the meantime, would it preclude you from the other drug?

[Stinsonmom]

Afinitor has worked for me for nine months. The side effects can be trying, however.