So, I’m so confused. After the scan showing Ibrance didn’t work after 4 months, my onco is putting me on exastamene and afinitor. At the appointment, they said they didn’t see a trial that I was eligible. I had mixed feelings on that like “trial? Why trial?” To “how can there not be a trial?
Now, I think that they meant there wasn’t a trial at my current cancer center. This kind of pi$$es me off because I think they should let you know all trials.
So I found another trial that is for people on exastamene and afinitor — the trial adds a 3rd drug. It’s at UPenn. They called me today and said I’m eligible.
I set up w UPenn for a second opinion. But in the midst of googling my current onc—forbes has her listed as the top 25 in US. The second opinion dr has 2 years in oncology. But UPenn has made so much news this year with the Car-T cell lung therapy success.
So, I’ll get a second opinion but don’t think I’ll change onc. And I guess I will send trial info ask my current onc about participating.
In one of my readings of radical remission—this woman participated in a trial 10 years ago for some BC vaccine. She was stage 4. She was NED after that trial. I don’t know if it was luck or a low success rate. Because obviously, we all would have done that vaccine!
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I had a 2nd opinionated Dana Farber and the have many clinical trials. I am a resident in Syracuse, New York and Dana Farber agreed with my treatment here. I love my docs at Upstate Cancer Center but if my scan shows that Ibrance isn't working, I will return to Boston for yet another opinion! It's your life and you need to live it! Two heads are always better than one and there are MANY CLINICAL TRIALS. In these major cancer centers. Look into all of them, it's worth it. A few years ago, Ibrance was a trial, now a major treatment in MBC, so what have you got to lose. Knock on EVERY door, it will be open to you! Good luck to you, go for it!
There is a web site that just lists clinical trials, clinicaltrials.gov. they list all clinical trials, but you can narrow it down in the website. Also some of the MBC organizations will list all MBC trials. Go to where there is the best medicine. Penn is a great choice!
Wow! Be sure to keep us posted on your doc’s opinion on participating in new trial. I would assume she stays on top of ALL available trials, as you suggested. God bless you and point you in the right direction! 🙏🏻🙏🏻 XOXO Linda
My lesson learned is she was only giving me information for the cancer center she works. She wasn’t discouraging -spoke highly of UPenn. She said when you join a trial, you transfer all your care to that facility for close monitoring.
Part of my dilemma is that my current onc is in Forbes top 25 oncos in US. However, UPenn is a higher rated facility. My second opinion is w an onc with 2 years as an oncologist. I tried to get appointments w more experienced but they were further out. I do think for initial consults that a board reviews the pathology.
I'm glad you were open with your current onc. I think it's good to keep the communication channels open. Did she have an opinion on the additional drug? What stage is the trial at? This is something Important to consider. Can you share the name of the UPenn doc? I was going to get a second opinion there too but have not got myself together enough to send my information to them yet. Would love to hear more about the trial. Wishing you best with this next decision.
The UPenn dr is Shah. Says she has been internal medicine since 2011; oncology 2016. There were a couple others I saw that were longer experience. But they are all Early and late October.
The med trial is Kisqali but I guess the trial portion is trying it after another cdk 4/6 failure (like Ibrance I think). I think if I wanted; I could possibly get an rx for it. Although Insurance may not approve it in addition to exastamene and afinitor since it hadn’t been tested yet.
I believe that's the same doctor my oncologist suggested I see if I went there for another opinion. I felt the same way when I saw her lack of experience but perhaps she really is brilliant? I had another older oncologist who was extremely experienced and had to leave when we moved out of state. I contacted him about my new status to get his thoughts. Just generally he says they're doing great things there at UPenn. (He's at NYU)
Yes; guess I’ll see. My hope is at least a panel of drs will review. And maybe she mentions something either altogether different or validates the direction. Personally, I like someone to have like 10-15 years. My concern with more experience, they don’t stay current on advances.
But, it does keep me on my toes and skeptical when my current Center doesn’t mention other centers trials. If even to say “we saw a trial you’re eligible but in our opinion...”
I’ve heard about this. They need a newer biopsy I assume. I think fccc does this but the problem is that the “more than 10 spots” on liver are less than 1/2 cm and too small to biopsy. Part of me hopes (after reading Outsmart your cancer) that maybe it was a larger tumor breaking and dying instead of “new activity”
Hi there. I was like you and after 4-5 months found that it didn't work for me. I went on a trial through UCLA that included exastamene and afinitor and ribociclib (similar to Ibrance) and while it cleared up all the tumors the side effects kicked my butt and i had to go off of it. 6 weeks after scans were still clean but my next set about 2 months later showed all the tumors in my liver were back. I know everyone is different so if you are interested and eligible you may handle the side effects just fine. Mine were fatigue, really low red blood cells (needed blood) and tremors. I believe the doctor managing the trial at UCLA is Sara Hervitz so you may want to google her and the trial. Best of luck to you!!
That’s exactly the trial I hoped to join at UPenn. But I see it’s Kisqali. It was approved recently as a first line. The trial is for after first line then in conjunction w exastamene and afinitor. Looks like kisqali has an average of 28 mts —maybe more. I’d love to find something that works awhile.
The exastamene and afinitor say 11 month average. Why can’t I ever have the pendulum swing the other way? IE Ibrance says 28 months and I didn’t even get 4! It would be nice to be the one who got 48 months out of it!
Kisqali is what ribociclib is. I have some info on it that I could somehow get to you if you would like it. Just let me know and we can figure out how to connect. It’s just what I signed when I agreed to the trial but may help you.
There is also a group I think called Foundation for Life -based in Boston. You don't have to go there but you can send part of old biopsy I believe and they do a super alnaysis of it. My doc suggested it. You can also submit for financial assistance and they may help you with cost ( I don't know what the $ is). I'm looking into it.
Ask your doc her thoughts on it. She can submit the application for you (super simple form) and results are to help guide her in drug choices.
That’s a great idea. I think the challenge is getting a tumor sample right now. The bone biopsy in February could not get a sample. Very hard apparently even w simultaneously scanning. Now the liver spots are still too small for sample.
So I read that the Burzynski Clinic recommends this sometimes. It’s $5800. It sounds like Insurance may not cover? Don’t know. I did have to argue for the genomics test.
Look it up. You can apply for financial assistance and they may cover it or some of it. That's is the group themselves has an application. I'm not sure how the funding works but look into it and call them to enquire .
go explore the trial if you can afford the travel and added stress. you don't give up your own onc locally - you just get a new one i would also see if the trial is open at dana farber. they are the tops in clinical trials. at the very least, they'll confirm that what your onc is doing is best.
although - why don't you talk to your primary onc about other trials? she should be in the know on options at other hospitals.
I think she is in the know but not necessarily steering me away. Have to
Say it’s making me think twice. Read an interesting MBC article about more focus on early stage at some centers. So, this part of the treatment journey is a challenge with the whole second opinion. I wish it was more like the flu “take this antibiotic 7 days” 😏
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i would also see if the trial is open at dana farber. they are the tops in clinical trials. at the very least, they'll confirm that what your onc is doing is best. 
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