Are you currently (or have you been) in a Clinical Trial?
Comments
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Proud- Thanks for joining us, it's so valuable to get the insights of people on the trials! Can you post a link to your specific trial? thanks!
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Cure-ious,
I will go by memory as I am out of town.... I did Foundation One and I have very little mutations. The main ones are FGFR4 and FGF19- which makes my cancer very agressive and attacks the liver. I cannot remember my 3rd one - non consequential. I have 2 alterations TP53L114fs and GATA3. Also did Guardant 360 - same result as Foundation One. I do not have PDL1, nor the ESSR, nuttin!! Just a very smart cancer that is a intelligent warrior
None of the AI’s work. I have nothing in my cancer thru tests that explains why.
Ibrance/letrozole - failed 4 months
Xeloda 18months and reach NED!!
Affinitor/exemestane - failed 3 months
Went to NIH for their CAR-T - they were not able to multiply my cells, nor grow them
Abraxane - 3 months - failed
Gemzar - 6 months - great for liver! But bone Mets progressed
Trial - randomized to Halaven 5 months
Sacituzumab govitecan durrently half of cycle 2. (Keep calling it Zazu from the Lion King singing the circle of life! Have to have a sense of humor
And to add various radiation treatments. So I am quite a bit over treated which eliminates me from many trials. Not as many options left.
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LoMa- I am very sorry for all the stress you have had to go through!!! And NIH couldn't grow the cells- crap!! Here is hoping Zasu works!!
Kattysmith here got great results with an immunotherapy-EP4 combo; few side effects with that, either, since EP4 is basically an nsaid/anti-inflammatory. Where is your trial-MD Anderson??
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And how about erdafitinb for FGFR inhibition?
I was just reading that the FGFR4:FGF19 pthway is turned on in about 30% of primary breast cancers- its quite a large subset, and confers resistance to Doxil.
BLU9931 and BLU-554 have activity against FGFR4 and there are anti-FGFR4 and anti-FGF19 monoclonal antibodies, which may work better with immunotherapy
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my trial is at UC Health Denver. It was not offered in Texas. I’ll ask about erdafitinb! I really like my MO in Denver. She is very caring
Thank you for all your suggestions to all of us that feel we are reaching the final treatments. I find your posts show you are very knowledgeable. I do not post much, but I do lurk!
Has anyone heard from Frisky?
Thank you again!
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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC63565...
BLU554 was derived from BLU9931 with improved pharmaceutical properties, FGF401 is evaluated alone or combined with a anti-PD1- these are now in Phase I clinical trials to treat liver cancer; if push comes to shove can you get these drugs under compassionate use and not have to wait for a trial?
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my trial is at UC Health Denver. It was not offered in Texas. I'll ask about erdafitinb! I really like my MO in Denver. She is very caring
Thank you for all your suggestions to all of us that feel we are reaching the final treatments. I find your posts show you are very knowledgeable. I do not post much, but I do lurk!
Has anyone heard from Frisky?
Thank you again!
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I believe that I was approved for Zazu under compassionate care. I kept being denied with my insurance for and approved literally the day of my treatment. It literally was just approved when we applied.
I'll present all,these options to my MO!
Virtual HUG
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cureous, i have a large printout of my study, but I am not finding it on line, clearly I am not looking at the correct place. They are studying solid tumors with mutations, seems I have over 20 mutations.
Gonna search again and will let you know if I find it.
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LOMA and CURE- do you guys mean FGF4?? I have FGF4 FGF3 and FGF19 but I do not have FGFR4 is that correct FGFR4 or did you mean FGF4???
Here is what is on my Foundation One : FLT3, GATA3, C11orF30(EMSY), CCND1, FGF3, FGF4, FGF19, FGFR1, FLT3,IKBKE, NSD3 (WHSC1L1), ZNF703
LoMa you are scaring me now... Because I have FGF4 and FGF19 I also failed Ibrance at 4 months EXACTLY...I also failed Xeloda it did NOTHING at least you got 18 months wow.
Cure- are you saying that FGF4 is also resistant to DOXIL?>>> because I am on that now
Also...I kind of thought Abraxane would be the big heavy hitter and I was saving that...now to hear it did NOTHING for LoMa and we might have those same mutations...:( 0 -
Hi Nicole!
So, there are a whole group of FGFs, and then a whole bunch of different partners for them, which are the FGF-Receptor proteins, called FGFR1-4. So FGF4 is different from FGFR4, and also (despite their name) these two proteins do not act as a pair; the specific FGFR4 partner is FGF19. However, your report indicates that several FGFs are elevated, including FGF19, so it may not matter that FGFR4 itself is not over-expressed if the thing that turns it on is at a high level. It's not obvious which ones of these, or something else entirely, is driving the cancer. Nevertheless, it is possible that the FGFR4:FGF19 pathway is "on", and worth considering what that could mean for therapy.
As indicated above, the good news is that drugs to this pathway are under active development and testing; I will post more a bit later as I'm still reading on this pathway. The trial that comes immediately to mind is the MATCH trial, which pairs cancers to drugs hitting their specific pathway. And the trial coordinators know best which drug would be most appropriate, based on the genetic analysis of the cancer.
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Thanks Cure. Couple of things... is LoMa in the TROPICS2? Yes right? That is the one I want to go in if Doxil fails...I didn't see you answer where I asked if you are saying that my cancer genes are basically resistant to doxil it still sounds like that is your thought? Obviously I know you don't know for a "fact"...but is that what you are thinking based on my types of mutations? The hospital that I am being treated at is not a NCI....I will ask the MO about the Match....
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Nicole, yes, I was on the TROPICS-02 trial But I was randomized to halaven. When Halaven failed, I was off the trial.
I was diagnosed in Oct 2016, so going on 4 years. (I also have CCND1. Just couldn’t remember). I don’t have that many mutations, so not as many options out there for me. Just remember that every cancer is unique. What works for you, doesn’t necessarily mean it will work for me. There are so many variables. Just be strong! Be positive. It’s amazing what your mind can do!
Get strength from the outpouring of love all around you!
Warm virtual hugs!0 -
oh, yes, LoMa, I forgot- CycD1 makes the cancer sensitive to Ibrance, and I read that FGFR4 inhibtors synergize with ibrance in the lab, so hopefully that combo will be tested in a clinical trial
Nicole, I don't have a sense about how you will do on Doxil, mostly because its not so clear if your cancer is really being driven by fgfr4- if it were, wouldn't the genetic analysis point that out as an "actionable mutation"?
Is a good question for both your MO and for Foundation One
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My foundation one said I was sensitive to Ibrance... yet Failed Ibrance/Let/Faslodex at the 3 month mark...so go figure...
LoMa...yes what you said is true we are all different and react different even with the same cancer's ie: HER2-.... for example you got NED on Xeloda and I failed that after 3 months...
Cure and LoMa thanks for your kind words and thoughts...what does "Randomized to Havalan" mean...that they didn't give you the other drug just gave you Havalan? Isn't that drug for Her2+ or no? Also...how are you able to get the Saci (the drug in Tropics) if you are not Triple Negative??? My MO said she didn't think they will give that for anyone not Triple Neg??
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Nicole, Tropics-2 is for ER-positive; the IMMU-132 drug was already approved for TNBC, so they can get it outside of the trial
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Nicole, randomized to Halaven (Erubilin) means that I did not get the study drug Sacituzumab Govitecan Tropics is for ER+, HER2- I found Halaven very tolerable.
My MO is one of the writers on the trial. Maybe that also helped in getting BCBS to approve? I believe she did push the “compassionate “ care
Whatever, however works! I just finished cycle 2 Sacituzumab and I’ll see my MO on Thur, June 25 for updates.0 -
LoMa...thanks... I am sobbing right now... Bev pointed out something to me that is an exclusion on the TROPICS2... you cannot have Gilberts Syndrome.. (its when you Bilirubin runs high..basically for no reason) while I have not been officially diagnosed with that on paper..my MO does believe I have it and have had it my whole life because my Bilirubin has always run high... I felt in my heart that drug (the one you are on) that ...that was gonna be THE ONE for me... I feel like you can TRULY UNDERSTAND (in a way) how I feel...I mean I am on my 3rd line already in a year nothing has worked more than 4 months... I thought God was allowing those to fail to lead me to the TROPICS2 because you need to fail 2 lines of chemo in order to get in. I can't stop crying I know it probably sounds stupid but that was my hope...and now I wont be able to get in..
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NR, is there a definite test to diagnose Gilbert's syndrome? Maybe you have something else that has caused high bilirubin all these years..
I hate to know you are suffering.
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Nicole, remember that even if you got into TROPICS, there is no guarantee of getting the drug. I was very disappointed that I didn’t get it. You can be randomized to 4 other drugs currently on the market. And I do not even know if the Sacitizumab is actually working.
Please don’t cry! Something is out there for you. There have been quite a few chemo’s that both my MO at home and I where sure would work... and much to our surprise they didn’t. But I will keep searching!! I am grateful for every day that I have here on earth. I am still able to enjoy my life and one can always find that ray of sunshine somewhere. Remember - positive thoughts. If something doesn’t work, you say - What’s next?
BIG hug
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Sandi..thank you ...LoMa... I know you are right. I didn't realize about the RANDOMIZED part till after I typed to you
so that is true...I may not have gotten it anyway. I heard about someone that got admitted for the Tentrique>(spelling) and is ER+ HER2-... don't ask me how..Have you tried that? 0 -
Nicole,
There are various trials for Tecentriq (aka atezolimumab). One of the things that can get you in is high mutational burden, but there are other things. Again, this requires going through trial listings and looking around a bit more. Try this search if you haven't already -- it's for metastatic patients -- hope it's worthwhile.
https://www.breastcancertrials.org/metastatic-tria...
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curious- thanks for the FGFR4 info. I am interested in what else you find. Sad to learn that FGR 19 is associated with more aggressive cancer aka poorer prognosis. Sometimes knowledge like that can bite.
Nicolerod - You and I have many similarities. I am on my 4th line in a year. Verzenio/Faslodex 3 months with progression, Xeloda 3 months with progression/ doxil 2 months with progression.I HAVE HOPE though- My current line is Afinitor/Faslodex/sandostatin(for the Neuroendocrine features) along with y-90 I finally have shrinkage!!! I got scans at 4 months and I am hoping to ride this line a long time.
I think I read somewhere that an Mtor inhibitor like Afinitor can be effective with the FGF19 Which is related to FGFR4 like Curious said.This place has been a Godsend of info. I am always searching for something to put in my bucket that is more personalized to my cancer. I am pursuing the Neuroendocrine avenue too. I have ESR1 but did not qualify for that trial. Tropics2 looks promising for me. I have 50 trials saved on clinical trials.org but only a few are even worth traveling for. You would think I would qualify for something at MD Anderson but they haven’t found one I can qualify for yet that shows any promise
hang in there Nicolerod!!! You will find something that will work
Dee0 -
Dee...thanks...but I don't think my MO will try Faslodex again... My first fail was Ibrance/Letrozole/Faslodex..and we do not know which one out of those 3 didn't work so she is not wanting to re-do something I failed on...
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Yes Dee, mTOR and AKT also are on with FGFR4, so trials that include everolimus or AKT inhibitors can go on your list, along with the fgfr inhibitors, all stuff to ask about- but remember just having high fgf19 without high fgfr4 doesn't necessarily mean the pathway is on
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I have FGF3, FGF4 and FGF19 as well (and FGFR1). I understand it is typical to have the combo of those three FGFs and it is common to have those 3 FGFs with FGFR1. I have 10 amplifications and 3 mutations in total on my F1. I have been able to get some mileage out of various treatments my F1 report would indicate would not work for me, including various hormone therapies. On the flip side, I have a PIK3CA mutation, indicated to respond to Afinitor and Afinitor did not work for me. F1 gives some guidance but it is in no way definitive of any particular response in any particular person.
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Dear All, when we talked to our immunologist, he said that F1/G360 and other test test for mutations and show them but they are not likely to know which gene mutations are "driving", and which are "passenger". Mostly this is why even when drug targets mutation, we do not get desired effect (cell death!) because drug targets not a "driving" gene mutation. So it is like a lottery - to hit a mutation that is a "driving" one. This is the reason why we fail on so many therapies even if we choose them according to genetic setting (like Nicole pointed out - she had to be sensitive to Ibrance but was not). And even if we hit the "driving" mutation, cells can survive over "passenger" routes... This explanation really shocked me, i.e. how unlucky we are:/ Saulius
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Cure..... I asked my MO about Match Trial... turns out we talked about it and looked a few months ago..here is what she said:
"I checked in the spring and you didn't qualify for anything on the MATCH trial. I asked again just now to see if there was anything else new that opened. Thanks,"
I will speak to her on Thursday when I go for chemo about Tropics2 and about my bilirubin possibly eliminating me and also about that it's randomized...
JFL and all..so when you say you FGF4 (like me) that is not the same as FGFR4 that LoMa and Cure were talking about?
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FGF/FGFR aberrations were most frequent in breast cancers (26/81, 32.1%, p = 0.0003). In multivariate analysis, FGF/FGFR abnormalities were independently associated with CCND1/2, RICTOR, ZNF703, RPTOR, AKT2, and CDK8 alterations (all P < 0.02), as well as with an increased median number of alterations (P < 0.0001).
FGF3, FGF4, FGF19 and CCND1 were co-amplified in 22 of 391 patients (5.6%, P < 0.0001), most likely because they co-localize on the same chromosomal region (11q13). There was no significant difference in time to metastasis or overall survival when comparing patients harboring FGF/FGFR alterations versus those not.
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Thank you so much Cure for that!
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