Time of day for taking Afinitor

[Buffwright]

I’m starting Afinitor today after 46 months on Ibrance. (Can’t decide whether it is a distraction from COVID19 or the other way around). It says to take it at the same time of day and to be consistent with either food or empty stomach. I typically take meds at night, but then my eating habits are irregular, so it would be hard to maintain the latter instruction. I’ve been taking exemestane for a week at night and am (perhaps coincidentally) waking up with a headache.

What’s your experience? Afinitor

[Barbteeth]

I’ve been on these drugs since January

I just take them about 6 pm as I usually eat around that time

I did have some headaches but they’ve now gone

Good luck

Barb xx

[Selmac]

I've been on Afinitor and Aromasin for over 2 years. Instructions are to take aromasin on a full stomach. So I take both after dinner every evening. No upset stomach or nausea.

[viennagirl]

Hello. I am sorry I don't know anything about the drug Afinitor. I am wondering if the Ibrance you were on for forty six months shrunk your tumors. If the Ibrance did not stop the tumor growth was Afinitor prescribed in the hopes that it would stop tumor growth or was it prescribed because it is a preventative for any increase in tumor growth?

Did you feel quite well on the Ibrance. I take Ibrance and Letrozole daily and have been on it for 9 months. My tumors are all shrinking except one and I am going to have radiation on that turmor. I hope you are feeling well on your medication. I wish you the best and hope that we all someday can use the word "cured". Hugs Marlene

[Buffwright in reply to viennagirl]

Hi Marlene. I started with spots in femur, T6, and lung. After about 5 months, CT indicated NED, but I had targeted radiation to the lung spot just in case! So Ibrance knocked it all back. A blood test in late November suggested things were changing (at 3.5 years) and a repeat of scans and blood test in February told of progression....not a lot, and in different places. So Ibrance worked as long as it worked and the switch to Afinitor is taking a different route, hopefully to the same longish term result. And by the end of this, there should be yet another drug in the market.

I felt OK on Ibrance. As they say, “my new normal” ....was good enough! I’m still active and engaged in my community. But also fatigue easier, etc. This is only my second day on Afinitor and its partner drug. Stay tuned!

[viennagirl in reply to Buffwright]

Thank you Buffwright for responding to my questions. It is good for me to know that Ibrance worked for you for quite a long time. And I hope you do well on Afinitor. My Oncologist did warn me that Ibrance does stop working after a certain period of time. I am wondering if at that time I should go to a naturopath and stop taking all drugs. The scary part about that is that my Oncologist would probably never treat me again if the natural treatments didn't work. I don't know if naturopaths have access to scan equipment so how would I ever know if you were on the right path. It is all so confusing. My Oncologist is a very difficult woman to work with (sort of robotic). She doesn't like questions - so I cannot ask her many of my questions. I try to my best to cooperate with her. Because at this time she is all I have.

Staying on the drugs is a difficult decision. I don't want to be on drugs forever but the alternative is scary. I don't know how long the Ibrance will work for me. I guess the effectiveness varies with certain individuals. I am also hoping that in the future there are new drugs that help me fight back the cancer. I have five tumors - that I know about - and one of them is in my femur. All of them are shrinking except for one which seems to be growing. I have one radiation treatment coming up on that one tumor.

Like you, I feel pretty good on Ibrance but I do tire quickly. I am grateful that I feel as well as I do and appreciate modern medicine but I do know that they can get it wrong. I read quite a bit about people who cured themselves but they also spent thousands of dollars going on naturopathic cures which sometimes involved travelling to other countries. I don't have the resources to do that so feel quite tied to conventional treatments.

I am wondering if you have trouble with the Afinitor if you could go back on Ibrance. It did help you for such a long time. Maybe it could work again.

All my best to you and thank you for talking to me. It is nice that you are still engaged in your community. It is good to be with people. I belong to a small Art group and they are a real godsend. They help me stay hopeful and positive as do my husband and children.

Marlene

[Buffwright in reply to viennagirl]

I trust science with this since the alternative seems to be a dead end (pun intended ). I had a spot in my femur too, but Ibrance killed it. When Ibrance quit working as well, moving to Afinitor and exemestane was the next step. Now I’ve had genomic testing so I know that Piqray will be my next line of treatment-hopefully in years. I do hope that Ibrance works for you even longer than for me. You can always do natural stuff while you’re attacking the cell growth with drugs. Build your immune system!

Be strong!