Are you currently (or have you been) in a Clinical Trial?
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@jsniffs Yes. They list SE as "Common, Occasional and Rare". People who are not in good shape may have little chance to survive. I know I shouldn't focus too much on this right now. After all you only need to face this when they successfully find T-cells that kill your tumor. Maybe by then It's a no brainer decision. Here is a bit taste of IL-2.
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Hi everyone, have you heard about this new cancer drug that works by targeting a protein called PCNA, AOH1996? It’s currently on Phase 1 clinical trial at City of Hope. Will this work with breast cancer?
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nikkiqh, Thanks for sharing all of that, excited that you got in!! Did they say anything about what they are looking for in a resectable tumor (size, location?)…
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Anx, I’ve seen several posts about that trial on a few Facebook groups, very interesting, can’t wait for updates 😀
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Anx - there is a city of hope link to this study posted on "Breaking research news from sources other than BCO thread".
I don't know how to copy it and put it here though
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So COH will devote two years with just 8 patients to figure out a dose? Who does a trial like that?
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@cure-ious. they want to find the killer T-cell from the tumor. As long as they can find 1 killer T-cell they are able to manufacture more in vivo with the help of other good T-cells harvested from apheresis. They have been improved their technique and successful rate since Judy Perkin's. For my case the surgeon will remove a a superficial tumor on my liver. Then I go back to SOC(Trodelvy), cross my fingers to keep it under control. They need 3-4 months to manufacture and test T-cell.
@jsniffs How is Trodelvy? I hope it's not too rough on you.
@anx789 I read that news too. Just like cure-ious I feel it's not normal to have only 8 ppl testing dosage. If anyone find more info pls share it here. Thank you very much.
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@nikkiqh - For Trodelvy, I had one cycle (2 doses) at 50% dose. The first week I felt like I had a bad hangover with acid reflux. However, the second week I felt fairly normal. Then, they upped my dose, and I just had my second dose of my second cycle at 100% dose. The first week I just had more fatigue than usual. We shall see for this second week. I think it's at least partially working or keeping things stable. I had some lymph nodes that seemed to be growing wildly prior to treatment. They appear to be stable or shrinking. I also had some bleeding skin mets that had scabs, and those scabs have fallen off/healed. I will take it! Best of luck to you on Trodelvy.
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Very Exciting News from Cardiff University (UK), via Chico:
An immunotherapy lab responsible for some of the earliest work on TILs therapy recently discovered a new type of T cell prevalent in patients who were cured of advanced melanoma following TILs therapy. These super-killer T cells had the unusual property of being able to bind to 2 or 3 different cancer-specific proteins (neoantigens) at the same time. Contrasted with regular T cells, which target a single protein, the souped-up T cells engage tumors more tightly, and are more specific for cancer as opposed to normal cells, because no normal cell is going to have 2-3 weirdo proteins that are usually only found on cancer cells. Therefore, these cancer-killer T cells bind more strongly to tumors and are safer because they are more effectively targeted just to cancer cells. Moreover, because they recognize multiple cancer proteins, these cells can attack various different kinds of cancers, not just melanomas. The group was able to crystallize some of these Tcell-protein complexes to prove that they can bind multiple cancer neoantigens at the same time.
So, they have found a new T cell that appears only in patients who responded well to TILs by effectively eliminating their cancer, and next steps will be to determine if these cells alone are sufficient to cure cancers generally, for example in the context of a CAR-T type therapy.
PS The research was carried out in Wales but the clinical trials are conducted in Denmark:
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Thanks Cure-ious for posting this. I have emailed the Prof and will report back anything I find out.
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Cure-ious and Chico
Thank you much for this! Hope springs eternal!
Stable at one year with bone only Mets. Maybe I'll live long enough to use this.
Eleanora
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I got only a hard copy of the summary of the Tempus test (MA doesn't get the concept of wanting the whole report )
Anyway It says I have 3 potentially actionable variants-
1) ESR1 mutation - Elacestrant
2.). RAD51C -Olaparib and mentioned 3 clinical trials available
3.) CHD1
I know Olaparib is being used for Chek2 mutations- (outside of a trial?). But, I thought interesting
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Nkb, Great that it shows the ESR1 mutation, as this indicates that the cancer is still endocrine sensitive, and so you could take Elascestrant or a clinical trial for any of the SERDs, all of which take care of that mutation within a couple cycles. Also PROTAC like ARV-471 or lasofoxifene will get rid of ESR1; I guess you'd want to take care of that first.
The RAD51 is in the same category as BRCA mutations, and actually in the literature CHD1 is also in that category, strongly suggesting you should try a PARP inhibitor at some point- Among these: "Talazoparib is the most potent, with the ability to trap PARP1 100 times more efficiently than niraparib. Niraparib is, in turn, more potent than olaparib and rucaparib." However, trials are also testing various PARPi in combinations, esp immunotherapy, which might do better than any of the PARPi alone, but regardless talazo in trial already had almost 9 months PFS, so not bad, you have options!…
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Cure-ious- yes, it feels good to have options- I don't know if a parpi would be given outside of a trial for these mutations.
I have noticed that oliparib seems to be used the most and that Talazoparib is more potent- I think NicoleRod might have started Talazoparib- wonder how she is doing?
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NkB, I don't know since we haven't heard from NicoleRod in awhile!!- i remember reading the PARPi are potent and often work but not necessarily for a long time? But then some trials had PFSs listed as 8-9 months, which is good for later lines, and several combine with immunotherapy which is very appealing. Like you, I'm concerned that some of these mutations won't qualify for BRCA mutant trials, and even if they did, would bone-only mets be allowed?! Its like the deck is stacked against bone-only patients…
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Cure- ious- the other thing is that these trials give US no data when they exclude bone only - on top of no early access. when it is approved we are blindly taking a drug that works for other mets with out knowing if they would work for a more indolent type cancer- many people with liver and lung don't have bone.
I know that Candy (was on palbo for maybe 4 years)- has liver mets and BRCA and has been on Oliparib for almost 2 years now.
Anyway…Hope Nicole is getting a good result.
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Hi @nkb, unfortunately @nicolerod experienced progression and said her goodbyes on the board back on July 20th. Here is her goodbye post:
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Cure-ious
Found this on a website called Nice News.
Don't know if you've already posted about it or if this adds to what you said, but wanted to share
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Chico and I would love to do some fund-raising for the research into these new specialized T cells found in the bloodstream of those whose melanomas were cured from TILs therapy (and not in those who progressed). After spending a decade in the lab working out the existence of these cells, its disheartening that the lab would then have to turn around and try to raise the capital needed to advance the discovery into CAR-T regimen that could be used in clinical trials, really a researcher should not have to do everything by themselves. Yes, the lab head can write grants and go around giving lectures to increase awareness, but pharma does not come knocking on the door for early-stage research, they wait until its obvious and chase each other around for the next gangbuster $$$-maker.
Does anyone here know of foundations that support innovative research outside of the typical grant application process? It'd be great if we (prospective patients) could pressure foundations and pharma to push research that we consider promising research along much quicker
Surely something exists beyond GoFundMe?
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I was also on olaparib and got a middling result - swapped after 14 months and its just because cancer was mutating on the BRCA chain itself (Im BRCA1) to get around the meds. It was a long, slow decline on that drug. Now, I havent had prior platinum based chemo or anything and this was stand alone with letrozole. Was just disappointed it was such a median response (easy to take though!) and Im worried it may have been better saved for a later line, but who knows. Im also de novo, bone only - the meds seem to keep any other growth elsewhere at bay, and I only have been experiencing regrowth at sites of prior radiotherapy.
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My recent experiences have been an ordeal. Officially off the KEYTRUDA trial because it blew up my liver, I’m also quitting fulvestrant after nearly 5 years. The evening before my hospital discharge in late July I started paclitaxel & gemcitabine. The weekend brought a steroid crash. I felt like roadkill, unable to do anything except listen to music with my eyes closed.
Monday, I went to a stand alone ER for labs and fluids plus got put on a prednisone taper. Neuropathy had affected my feet but, since I was already taking gabapentin to mitigate night sweats from the anti-estrogen shots, that symptom has eased up a bit. However, now I have mouth sores and my hair is coming out. Insulin also became part of my routine.
In addition, I tripped getting out of bed at home in the wee hours of the morning. My clavicle sustained a hairline fracture at the site of a previously healed bone met. Never a dull moment!
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Sondraf
I'm also bone only and was cheered by your comment that the meds keep it from spreading elsewhere. I am only 14 months from MBC DX and my greatest hope is that it stays in my bones. What type of radiation to bones have you had? I had ablative SBRT to the right pelvis and to the clivus last year, as they thought I was oligometastatic, but additional bone mets had been hiding and showed on scans months later, thankfully already sclerotic from Kisqali. You mentioned regrowth at radiated sites and my greatest fear is regrowth at the clivus. I'm wondering if you had ablative radiation at those sites.
Thanks
Eleanora
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vlnrph,
Ordeal indeed….You've been through a lot in a short period of time since starting the Keytruda trial. I'm sorry the trial didn't work out and hope your situation starts to calm down and stabilize. Please keep us informed on how you are doing.
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Hey Eleanora-
Ive had L3, L4/L5 (x2 for L4 - the second time because of the L3 radiation some of L4 was in the field), and the big sacral/pelvic met x1. Actually I think L5 was in the field for that. So its all been grouped in that same lower area (the rest of my spine looks beautiful btw :P)
I also had breast and axilla radiated last year. I think there is a limit on rads you can do but I dont know what it is. Also it helps if you have a few years between rads treatment, because its been almost 4 years on this spot, they confirmed it can be done.
One of the issues with bone only is that its hard to measure disease, but I am on a specific scan protocol of full body MRIs so oncologist can keep on top of growth early.
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Sondraf
Thanks for sharing. I have many more bone mets than you do, but they seem to be stable since my MBC DX in May of 2022. My biggest fear is that the met (8 mm) in the clivus will become active again. It was treated with a very high dose and curative intent according to my RO, so I doubt they would be able to radiate that again.
May you stay bone only forever!
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I think the rly 2608 clinical trial is over for me. After 5 days in icu, a week later I’m still working to get my strength back. Walker and wheelchair. Still using insulin but ketoacidosis has passed. Still lots of edema. Doc said he has lots of paperwork and reporting to the FDA to do as I am first with these severe SEs. I was on 1000 and they would consider offering me 800. But I would want to go to 600. Too bad cause was working on the cancer. It all just happened so fast!
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Wow believe60, that is quite a turn of events. I am sorry to hear about the sudden onset of such scary side effects, especially after a good scan result. With vlnrph's experience in her trial, it is a sobering reminder that these are all still in the investigative stage.
Wishing you both a speedy recovery and a better experience with your next treatments.
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