Results from PET scan yesterday shows 2 of 3 tumors have grown and uptake is brighter. Oncologist has taken me off ibrance and faslodex after 18 months. Starting Afinator and Exemestane. Been reading about the side effects and they look horrible. Would like to hear others experience on these drugs. Oncologist said medium time is 5 months and then will have to go back on infusion chemo because there aren't any other options. I know it's early but I am not sure if I want to go back on infusion chemo. I also had DNA testing done and I have the PIK3CB gene. Piqray is not an option like he had thought. Feeling a bit discouraged today.
Thank you for any input,
Robin
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Lovemylakie
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Why isn’t piqray an option if you have mutation? I put it off because my neu converted to positive and Herceptin is to treat that. I do not want to do 3 drugs at time. Piqray has high rate of diabetes development but that is the targeted therapy? Did you ask why?
I know how you feel. Any changes throw us off . Was that your only positive mutation?
Be cause my gene is PIK3 CB not CA. I asked and he said it wouldn't work on my tumors. Getting meds tomorrow and not looking forward to this protocol. Will see how I do. I haven't been feeling well and this is why. Thankfully I am retired and can just chill out home. I take 3 hour naps everyday. I have a room called the Nap Room. After I rest I always fix a nice latte. I take aswaghandi to help with the fatigue. How are you doing?
I'm sorry to hear that you had progression with Ibrance/Faslodex. Changing treatments is always a tough time - wondering if the new treatment will be effective and for how long and worrying about the side effects . I was also very anxious about starting Afinitor. The good news is that it worked well for me for two years. I did have several side effects, but my oncologist was able to reduce side effects by managing the dose of Afinitor (5mg for one year, then gradual increase to 7.5mg over the 2nd year). Still had good results at the end of two years, but had to stop because of inflammation of lung lining.
Julie2233 posted about the Afinitor/Exemestane combo about a week ago. You might want to check it out - a lot of information from women who have had experience with Afinitor and Exemestane.
Just completed my 3rd cycle of the Afinitor and examethane- it has been the most challenging combination!! Hgb hit a low today at 7.1 mg- totally fatigued and short of breath!!! Taking a drug holiday- going for 3rd opinion in November- ibrance and Letrozol did not work for me either- I did get 3 years on xeloda- hoping for a clinical trial- not interested in going the IV route!!
Hi Love! I’ve been on IV Immunotherapy and targeted for 3 1/2 years...the first year was the worst...and I work full time...so getting them to understand my needs when it comes to scheduling and fast friendly service was like pulling teeth. They are too used to dealing with the retired 60 year olds that cater to their whims. But after 3 years I can honestly say they may be getting the concept of patient centered service...
Good luck! I’ll pray for more pills for all of us!
I am HER+ with PIK3CB gene. Cancer had already metastasized from the get go 4.5 years ago. They didn't find out it had metastasized to left lung until 18 months ago. Started out on Famara then 18 month on Ibrance with Faslodex which now has stopped working. Only option after this new protocol is infusion chemo.
I have learned not to read the side effects when put on a new medication. The mind is a powerful thing. I did it once and it was a bad decision for me. You start imagining that you are feeling the side effects of what you are taking bc you read that someone else that is on same med combo is suffering from them. Like with Ibrance, there were many women who said, except for some fatigue, they felt the same taking the Ibrance as they did on the week off. I felt horrible on my week off. It was a week spent in bed every time on my week off. I felt sicker than I ever did before. I was taken off after three cycles. So I learned not to read about any new meds when starting them. If I do start to feel something, I will then see if others have had the same side effect and the only 100% sure I learned is that everybody has different side effects and degrees of how it affects them. What may make one person feel great, may make another feel awful and vice-versa. This way I am not thinking I feel side effects bc other women posted that they felt a specific side effect.
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Unknown Territory!😔
