Are you currently (or have you been) in a Clinical Trial?
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@nicolerod - Praying for you. I hope you feel better soon. You've been through a lot. Hopefully you can get some good rest. That's great that it sounds like they got some good cells.
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Oh Nicole, that liver resection does not sound fun. I hope you start feeling better soon and that Enhertu is both kind and powerful.
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You are in my prayers Nicole. I hope you can spend some quality time with your loved ones while you recover.
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All of you STAGE IV ladies are heroes in my eyes as I read about your personal experiences with this Bitch of a Disease. I am only now going into this basically new since I was naive enough to believe I actually had beat this 13 yeas ago StageIIIA. NED all these years and then getting that call from my ONC to getin for scans immediately…..Boom !!!…STAGE IV Mets to Ribs left and. right, Spine, T & L. Multiple mets throughout,including Sacrum left & right, and Ilia😲… feeling SHOCK, FEAR, sudden Determination to be Optimistic and even Cheerful and act as if nothing has changed…All to encourage my children and other family & Friends. I don’t want them to ink into a negative fear of losing me any day.. Dear nicolerod, my prayers are with you as you face yet another fight with this Bitch of a disease.😞💗
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Nicole, there is a discussion group on Enhertu called…Anyone Starting Brand New Drug Enhertu. You might find it helpful. I just had my second infusion a week ago. The first one came with some pretty tough side effects, but so far the second cycle has been better. I hope you have great results and the side effects are minimal for you.
Anna
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Anything exciting coming out of ASCO? Looks like there was something meaningful in regards to Piqray, but Cure-ious I defer to your knowledge :)
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Hi Sondraf, Thanks for the 'heads up', will read up on it! They have reported that Kisquali (Ribocyclib) is good with AI for early-stage breast cancers; just like Verzenio, it reduced recurrences by 25%. So that is now an option. Interestingly, Ibrance behaves differently, it helps while patients are taking it, but recurrence frequency jumps right back once they go off, whereas they keep going lower for the other drugs. Just like how Ibrance does not improve overall survival for MBC, whereas the others do…
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Hi all. I just started a clinical trial on June 1st. The drug is called RLY-2608. It is a drug that targets the PIK3 mutation. They are hoping it will be less harsh on patients than Piqray, and also of course be effective. It is a phase 1 trial, so I know I am getting the drug. From what I’ve read, I am getting a much higher dosage than patients in the early part of the trial. I didn’t even last 6 months on ibrance/fulvestrant so I’m really hoping this drug can at least stabilize things. My bone Mets responded to ibrance but liver Mets kept increasing.
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@believe60 I’m glad to see your post here because I wasn’t seeing you on the Ibrance thread anymore. I did a little reading and even though RLY-2608 is still in dose escalation, they were still able to publish some early results. I find these PIK3 trials a great opportunity to find an effective drug without the dreaded glucose issues associated with Piqray. Good luck and make sure to post updates.
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Here is what was presented at ASCO regarding the BLU-222 CDK2 inhibitor trial I was on. On the poster, I’m patient 4 -the only partial response patient. When they measured pRb%, I was greater than 12 hours since my last dose because I couldn’t eat before my biopsy and needed to eat to take my pills. They commented that my pRb% may have been better than actually shown. I’m CCNE1 amplified. It looks like they are going to see if they get better efficacy combining this drug with others. And yes, that’s my liver on the poster. Lol. How did they leave off that I suffered from horrendous diarrhea?
https://scrip.pharmaintelligence.informa.com/SC148486/ASCO-2023--Pfizer-Pushes-Forward-In-Drug-Resistant-Breast-Cancer
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Wow, rk2020, our first poster star for a clinical trial!!!! Nice looking liver response there!!!
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Thanks rk2020 for the two links. It's interesting to see the update for your trial, but a shame BLU-222 didn't work for you longer. It was also good to read all the Pfizer is doing with its new inhibitors.
They just added fulvestrant shots to my combo of CDK2 & CDK4 inhibitors - hopefully third time will work as it did for tries #1 and #2. My side effects have stabilized to manageable now following the reduction in the CDK4 dose. I'll see if I can track down more info on the ASCO presentations re the drugs, I lost sight that it was on (likely because I left twitter).
My next trial scan is in 2 weeks.
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Believe, The RLY-2608 early results were at ASCO last month, great responses, I think its too early to get a good idea for how long people respond, and SEs were rash (31%) and diarrhea (9%).
Another good drug for PI3KCA mutant cancers is Capivasertib, an AKT inhibitor, and it also does not have the blood sugar and other problems of Piqray. The phase 3 results were just published in New England Journal of Medicine, SEs were rash (12%) and diarrhea (9%). PFS was 7.3 months, and it was the same for cancers with or without PI3KCA mutations. Should be at FDA for approval so can be at clinic later this year.
Somehow my ability to post a link is completely screwed up on this site, so sorry no links…
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I believe this is the article that @cure-ious was referencing:
Turner et al (2023). Capivasertib in Hormone Receptor–Positive Advanced Breast Cancer.
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I do believe there are studies now for circling back to the CDK 4/6s no? Id love a crack at Verzenio or Kisqali since I didn't do real great on Ibrance (and frankly, wasnt that impressed with it - ohher lookit me having an opinion! :P ). Im curious why some go forever and some crank out the bare minimum but I suppose that is a stats and population size thing and we are just skewed by what we see on the forum.
Capivasertib was raised by my MO recently as a potential pending blood biopsy results. She was expecting it in clinic end of the year.
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@newgardener - I’m thrilled that you are doing well on the Pfizer trial! I just checked in this morning with someone else I know on the Pfizer trial. Unfortunately, she had a mixed response after 2 months so she dropped out.
I had an 8 week CT last Thursday for my AC699 PROTAC trial but don’t yet have the results. 😟My doctor is at ASCO and hasn’t pushed the results to my portal yet. 😩 My bone scan is done at a different facility so I have those results. Bone mets stable except for something possibly lurking in my left jaw. My chin and left jaw have been numb since May 7. Brain MRI was clear except for 2 low intensity skull lesions. Bone scan said left mandible suspicious for additional osseous metastasis. I don’t know what to think but I cancelled my Zometa infusion that I was supposed to get today. Ive been on it quarterly for 3 years and was thinking it’s time to stop but my doctor wanted me to stay on it. Nonetheless, I’m going to stop until I can get a better handle on what’s going on with my jaw. My body. My choice. Due to ASCO, I guess I won’t get my CT result until tomorrow. I’ve got concerns over spleen/pancreas area as well as my liver. I’m really not good at waiting. Good or bad…I want to know.0 -
rk2020. I agree about waiting. I've been known to play too much solitaire:( . I am sorry to hear about all the areas of concern - it sounds like you will need to have a good convo with your health care team once they are back. I hope that the end result is that you can stay in the trial - and that you are comfortable with the choice.
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Dear all, I think these results will pave a quick pathway for approval of PDXd (first, most probably in the US): https://www.onclive.com/view/her3-dxd-elicits-responses-and-safety-in-heavily-pretreated-er-breast-cancer-and-tnbc
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AC699 PROTAC estrogen receptor degrader 8 week scan results:
Bones stable except area of concern in my jaw. Liver lesions growing by leaps and bounds. Trial over for me. Not unexpected but disappointing nonetheless.
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Rk2020, I'm sorry to read your news, especially re the liver progression.
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Dear rk2020, sorry for the news. But then let's think that maybe this dang progression has opened doors for something else. Also, fast growing suckers, if hit right, suffer quickly. So now we could think of targeting trop2, her2low and her3 (you must have expression to make PDXd useful - but quite many cells have it, we see it in clinical trial)? Have you discussed anything with your clinical investigators or your MO, what options there could be? Hugs,
Saulius
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@bsandra - Based on my 2020 bone biopsy, my research oncologist would like me to start Enhertu. I’d get a new liver biopsy to confirm I’m still HER2 low. That will be my 3rd this year! The first 2 were for the BLU-222 trial and my material was donated to the trial. I did not get any results. I’ve also got a second opinion appointment with a breast cancer specialist lined up next Tuesday. I was expecting bad news, so I got the ball rolling on the second opinion last week. I had planned to ask her about Travera but if I go the Enhertu route, I think I’ll save Travera for later. I also want her to help me get to the bottom of my jaw. Is it a lesion or is it the beginning of ONJ? My chin and left lower jaw line have been numb since May 9. My lower teeth feel like I’ve got beef jerky stuck between each tooth. My brain/skull MRI on May 11 only showed a few low intensity skull lesions. No mention of jaw area. The bone scan said area suspicious for osseous metastatic disease.
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Can anyone please explain to me in EASY to UNDERSTAND terms the Difference between CAR-T and TIL? I know what TILs do or should I say how it works..but I am not clear about the CAR T…. should be looking into CART instead of this TIL???
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Dear rk2020, with something up the neck, Enhertu is a very good choice. And it is a very effective drug, thankfully can also be used immediately (not in clinical trial, I mean). New liver biopsy and er/pr/her2low confirmation is a very wise step. I am very hopeful for Enhertu, very… I don't believe you might have lost her2low, as you have never targeted it.
Saulius
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Dear Nicole, the difference is that these two are different strategies: TILs - lymphocytes taken from your tumor (means they are fighting the tumor and recognize it), multiplied in the dishes/labs and brought back to you in big numbers, CAR-T - lymphocytes taken from your blood, re-engineered in the lab for specific antigens, brought back to you, multiplied inside of you with growth factor hormones. TILs are much more specific, probably fighting more expressions/antigens and reaching solid tumor better, as of today. CAR-Ts usually are re-engineered for one specific mutation and work well in some blood and lymph cancers where delivery is a minor issue, and where cancers have that very specific mutation. CAR-Ts stay in the body (blood, lymph) for many years "patrolling" it, TILs don't (please correct me if I am wrong). There are many studies for CAR-Ts for solid tumors but I'd say they are not very successful yet, and there's no data that would help us to compare TILs-fST vs CAR-Ts-fST:/ That, for sure, sucks…
Saulius
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Saulius thank you SOO MUCH for that explination it was so easy to understand. Only bad thing I see is when you mentioned TIL's wont stay in the body long patrolling…so thats bad right?
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rk2020- I'm sorry your liver is going crazy and happy that the protac worked for your bones. it sounds like protac might work better in combination with something that works in the liver. bones often are indolent and don't work with the same drugs that help the liver so much.
Enhertu would seem like a good choice- IV every 3 weeks, 50% lose hair, in Destiny 04 worked in ~50% of heavily pre-treated (average 7 prior therapies) for PFS of 10.5 months. No data for bone only. they are doing a study on Her 2 zero as well. the first cycle is dicey, but, gets better, it is not working robustly for me (bone only) but, keeping me stable- I think I will make the 10 months- but not much more. They are using tons of it where I am.
Have you ever been Her 2 low?
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@nkb Thank you for your words of encouragement regarding Enhertu. That means a lot to me. I’d be thrilled to get 10 months. 🤞🏻
My 2020 bone biopsy showed HER2 2+. If things haven’t changed, Enhertu should be a good fit. I’m nervous though. More nervous than any drug I’ve taken so far. It probably doesn’t help that steroids have me jittery and I’m not sleeping well. When I didn’t hear back from my local oncologists office after they got an email from my trial oncologist AND I left 2 messages, I drove there. They can’t ignore me if I’m standing there. Lol. I was able to plead my case and got an appt with my local MO first thing Friday morning.0 -
rk2020, I am very sorry to hear about the progression. You are in my thoughts and prayers. The Enhertu sounds like a good next option.
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