Hallo all
Second line treatment ibrance + Faslo has failed me after 24 cycles.
Am ER/PR +ve HER2 -ve - bone only mets.
Mets diagnosis jan 2018.
Will be starting Afinitor + Aromatase
Your experiences /suggestions/ how long did this combo work for you , will be much appreciated!
Thank you !
Jo
Hi Jo,
I'm so sorry about your need to change treatment...
I believe that Afinitor = Everolimus (?), in which case, I have that queued up for me a bit farther down the road. The aromatase (sp?) inhibitor I expect to pair it with is Exemastane (= Aromasin).
According to my notes from meeting w/ doc, Afinitor is an mTor inhibitor...I'm not sure what that means, but I recently got the results of my liquid biopsy and noticed that there was no indication of "mTor" in my top results, although I did see that it was included among the things they test for. So will this change my course? I don't know...But apparently they tested for CDK4 & 6 and that didn't come up either, yet of been in Ibrance for a while and that is the "thing" it addresses? I see my doc in a couple of weeks, will ask her...
So I don't have any personal experience...yet....but did notice that the comments on the board here seemed to be more favorable than for, say, Piqray. I hope someone with experience responds...
Wishing you the very best on it...
Lynn
Thank you Lynn !
Yes it is as you say - the combo of everolimus and exemestane.
Good to know that comments in board have been ‘favorable’.
I was personally leaning towards zeloda in the hope that it would maybe clear up some of the existing bone mets. Zeloda is an option but dana farber says rather do mTor + AI for now and skip chemo. I forgot to ask them if after Zeloda - if it does indeed work - if one can get back to a cdk inhibitor + a blocker.
Anyway - both oncologists - DF and my Miami one gave same options for me .
Thank you !
Jo
Were you taking Ibrance alone or in combination with letrozole or fulvestrant?
Hi Jorgit -
...Both. At the time (not sure if this is still true), when you "failed" on a treatment that included Ibrance, you had to give up the Ibrance as well as the other drug. It's a long story, but I persuaded my doc to let me keep the Ibrance in combo with my second drug, Faslo. She coded the change as due to side-effects, not progression, to get it through the system. Again, I don't know what the current protocols are, but I'm grateful for her flexibility in accommodating my request.
That is kind from your Doc...Some other patients are switched to a different CDK-i instead of changing the antioestrogen...I guess every choice is difficult both from Doctors and patients as once there is a change in meds we will always ask ourselves "what if..."Best Regards, LynnFish
Hi, I was on Afinitor and Aromasin for 2 1/2 years. I did really well on it. Any specific questions feel free to ask.
Thank you !
What was the worse side affects you experienced? I am feeling nervous about starting ..... do you have bone mets ?
Joey, yes while on it only bone. Ribs, spine, shoulders and front of hip bones. I used a prescription mouthwash with steroids in it 3 times daily whether I needed it or not. Never any mouth sores. The Oncology nurse talked with me and my husband for almost an hour. Not telling you to do this. It's just what she told me. Per Oncologist, no Tylenol or ibuprofen because they somehow go through the liver. I was given oxycodone for pain but rarely took them. I was on the highest dose of both for almost 2 of the years. The most important thing is to drink at least 60 ounces of water per day. Thats the only thing I drank besides a glass of carrot juice every morning. I did have an occasional smoothie. I had no side effects for almost 6 months with no hair loss at all. The only side effect that bothered me was getting sores. The ones in my head didn't bother me. Usually 2 or 3 at a time. I got them all around my mouth on the skin around my lips. They didn't hurt, they just looked bad to me. I always tried to cover them with make-up when going anywhere. They did give me a prescription cream that helped some. Other than that I did everything I could do before I had cancer. I wish it had worked for me a lot longer. I had days here and there where I was tired. Sometimes I gave in and sat in bed and read all day. They were rare. Unless someone knew me well, they did not even know anything was wrong with me. I was so scared to go on it but glad I did. I know our bodies are all different but this was my experience.
Hi, like you the combination of Riboclclib and Faslo did not work for me. I have started Afinitor and Exemestane - about month ago. I have bone mets but have also developed a problematic node that is active.
So far so good. I have not taken any pain meds, I was on panadol osteo twice a day and overall I feel quite good just a little tired in the afternoons (what's new!).
My oncologist advised me to rinse (and spit out) a tablet of dexemethasone diluted in 40ml of water - 10mls x 4 times a day and my chemist advised taking Afinitor inside a gel cap - all of this to prevent mouth ulcers. My oncologist has suggested that once you get through the first month the ulcer issue subsides.
I have also found this article below about how Lithium also helps prevent spread to lymphatics alongside a drug like Afinitor. My GP who is also a naturopath has researched this and found it to be scientifically sound so I am going to try 3mg of Lithium Orotate (compounded) next week when it arrives. I will let you know how it goes. I already take curcumin . Please note from my research you should not take the chrysin supplement if you are already on an aromotase drug.
Wish you all the very best with your new treatment.
CANCER METASTASIS
Metastasis is the spread of cancer from the site of origin to another part of the body. It is the main cause of death in cancer patients. Hemangiogenesis (also known as angiogenesis) is the formation of new blood vessels from preexisting ones. Lymphangiogenesis formation of new lymph vessels from preexisting ones. Both processes are required for metastasis. While countless drugs have been developed to target tumor growth, comparatively little has been done to develop drugs that target metastasis. Although a few anti-angiogenic drugs have been developed, such as Avastin® (bevacizumab) and Afinitor® (everolimus), overall survival has improved very little. This is because most metastases occur following invasion of and dissemination through lymph vessels rather than blood vessels. If you are taking an anti-angiogenic drug, please have your oncologist consider adding lithium and bioavailable (this is key) curcumin and chrysin to inhibit lymphangiogenesis.
Dr. Daniel Thomas, DO, MS
Mount Dora, Florida, USA
Thank you for all you have shared! Best of luck with your treatment!
Hi, I am on Affinitor and exestamane for 5 weeks bloodwork stable Ncharleston wants to up my dose. A few side effects but manageable. Ibrance stop working for me too
I was on E/E combo for 4 months. Had progression. Doc switched me to Ibrance/Faslodex combo. Hoping this will do the trick. Everyone responds differently. Next course is capecitabine/faslodex if this doesn't work. There are always treatment options. Have you had genetic testing yet?
Thank you! Good luck with the ibrance/faslo line and i hope it works for you. It worked for me for 24 cycles - and side effects were not too bad. Yes i did guardant360 recently - shows up with ESR1 mutation at 0.4%.
Joint & tendon pain on Aromatase inhibitors
Afinitor/Everolimus and Tamoxifen is next :(
Exemastane and Afinitor 
AFINITOR SISTERS
Afinitor and faslodex
