Are you currently (or have you been) in a Clinical Trial?
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interesting Susan! Melisko did tell me on re-biopsy she has seen some 1+ “Change” to 0, but, has never seen that with a 2+.
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Just saw this news. Gedatolisib fast-tracked by the FDA!
However, looks like the ORR and PFS drop significantly if you have been on a prior CDK inhibitor. Also seems to have high toxicity.
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Susan: I asked my oncologist why the NIH TIL trial under Rosenberg would be suspended following the positive update, and he said possibly because a patient died,or because they ran out of funding.
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The interview with Rosenberg mentions these trials are moving to a new building space and expanding to include a lot of other cancer types, so altho there is some lag here but they are definitely not dropping them.
The CA version of CAR-T from PACT pharma is also not recruiting anymore, will be interesting to see what kinds of responses they got. They were only aiming to pick one neoantigen to target. Overall it's kinda amazing that CAR-T is heating up around solid tumors, that was so unlikely just a few years ago
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Dear Luce, Cureious is right - Rosenberg et al are moving all labs to a new bi g building (just months ago this was also mentioned by one of his main scientists Dr. Goff at https://www.ourmbclife.org/episodes/rtac-goff-perk...), so they could work with more patients, and definitely TILs are promising and research will go on!
Saulius
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I think I mentioned this before but I have heard that the PACT Pharma trial is not going well. Theresa told me that there were a lot of people from PACT Pharma sending out their resumes looking for a job elsewhere.
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Has anyone read anything positive on the Stemvac cancer vaccine? The clinical trial, nct02157051, popped up in mbc connect. I couldn't find too much information on the cancer vaccines. Also, I noticed it has a preliminary completion date of Feb 10. Does that mean they will have some preliminary data to share?
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Simone..just curious...but I didn't think vaccines can work for ppl that are already stage 4? or are you just asking for those that are not yet?
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Nicole, that is why this trial sounded interesting to me. It's open to those stage 4 that are NED or have stable bone disease.
I have my scans next week and I'll ask my MO what she thinks about this.
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Simone...ohhhhhh ok gotcha...cool
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Just a few days after my second infusion of ARX-788 last Thursday my breathing started getting a lot better! I used to have to stop 4-5 times walking up a hill to the park with my dog and now I can just walk up without stopping. It's like a miracle! I have also gained 10 lbs and building up muscle now that I can breathe better. Megestrol, a drug originally given to wasting AIDS patients, is part of the reason for the weight gain. But I also think that my cancer is no longer growing. My weight has always been a spot-on prognosticator of my cancer progression/regression. About two months ago, I had spiraled down to 100 lbs and couldn't seem to stabilize my weight. That was scary.
Anyway, wanted to share the good news. Before getting on this trial I prepared my documents to be able to invoke my right to die thinking that I may not make it until the end of 2021. I didn't have any good treatment options left. Now I'm feeling great! No noticeable side effects.
It ain't over 'til it's over!
Hugs, Susan
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Susan!!!! The best news! I am so excited about your response.
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Fabulous news Susan. I’m so thrilled for you! You are a trailblazer and a fighter. So glad that you are seeing results!
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yay Susan! Those hills out by you are nothing to sneeze at.
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CONGRATS Susan on your wonderful progress so far and your future climbing upwards.
Just an FYI- Megace is also good for hot flashes (in case you still get them). I was on a clinical trial 24 years ago to follow up on anecdotal records that people taking megace also noted a reduction in hot flashes. The clinical trial used a very low dose so it wouldn't cause weight gain- It was GREAT at reducing hot flashes. it was never taken up by mainstream medicine because anti-depressants came along as a way to relieve hot flashes. It would have been way less expensive and just as good if they had packaged it for hot flashes it but I don't think it would have been a money maker so it never happened. Nina
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That's great news Susan!!
I'm still on the Tomivosertib trial. Tumour marker results today, they are stable at 490 which is the same as January. While I would like them to drop, anytime I am stable I'm happy.
The trial has been closed, my trial RN told me on Monday. They gave no notice that it was going to close, but she said they made their numbers so didn't need any more participants. Hopefully this will get approval soon. They will continue to supply me with the drug as long as I am stable. My next CT is on the 22nd of February so we shall see what happens then. I started cycle 11 on Tuesday, fingers crossed for more stabilitycheers, dee0 -
Dear Susan, wow, this is amazing, huge congratulations and you deserve it 600%! Could you tell us more about the details, like, do you get infusions every 4 weeks, and are some of your cells her2low? I am sorry, I probably ask questions that were already asked? If you are her2low, then Destiny-Breast-06 is there also for you! Saulius
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Great news Susan
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Susan,
So happy for you. This is wonderful news. May the improvements continue!
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We're so happy for you, Susan. Congratulations!
Te Mods
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Great to hear, Susan. Enjoy those walks
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So happy to hear your good news Susan!
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I believe it was one this thread that we were discussing the trials at NIH that had involved Judy Perkins at one point. I know that I, for one, was speculating about why the listing in Clinical Trials was saying that these trials were suspended.
I emailed Dr. Stephanie Goff at NIH who is, I believe, the current "face" of these trials, working under Dr. Stephen Rosenberg, and this is what she said about the current state of the trials, for those who want to know:
"Thank you for emailing. Our trials were suspended as we improved operations and moved to a new state-of-the-art manufacturing facility.
The rumor about ceding to commercial interests is false. We are looking forward to getting back to our work after the hiatus, pushing the boundaries of science and creating the medicine of tomorrow.
The trials should now be listed as "recruiting" on clinicaltrials.gov.
Much of what we do here starts with the surgical resection of a metastatic deposit. I am cc'ing our referral team on this email who can start the screening process for our trials.
I am also including a link to a page I hope you find helpful. https://ccr.cancer.gov/surgery-branch/clinical-team/surgery-branch-faq"So - bottom line is that they are now recruiting once again. NIH is located in Bethesda, Maryland for those who do not know. Hope this is helpful information.
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Susan, your news makes me so happy! Congrats.
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Thanks to everyone for your kind messages!
Saulius, I go down to USC every 4 weeks for my infusion. ARX-788 is an ADC consisting of an anti-HER2 monoclonal antibody linked to the tubulin inhibitor AS269, an MMAF. I am HER2 2+. The sponsoring company, Ambrx, is based in China. The drug was fast-tracked by the FDA last January. Here's a link to the trial: https://clinicaltrials.gov/ct2/show/NCT03255070
Dee, So happy that Tomivosertib is working for you for so long! I wonder when it will have clinical trials in the US. I hope I can get a good long run on ARX-788.
I just noticed that they also started a Phase II trial of ARX-788 for HER2+ people who failed on TDM1 or T-DXd. https://clinicaltrials.gov/ct2/show/NCT04829604
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That's interesting info, Susan. And so glad to hear that you are doing well on ARX-788. Whoopee!
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Susan, Just hearing your amazing news this morning- Whoo-Hoo, You made my day!!!! So basically you are saying you could tell a big improvement in just a month? And, since you are a responder (apparently & hopefully a huge one), it opens up future Her-2 directed therapies that can work too.. Life is so sweet...
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Dee!!! I was just wondering how you were doing with Tomivosertib! How long has it been now? And you are taking it with chemo? Tomivosertib is also good for fighting T cell exhaustion.
The company says they plan on opening a trial that combines Tomivosertib with Abemaciclib and Fulvestrant
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BevJen,
Thank you for sharing the information about the current status of the Rosenberg trials at NIH. I filled out the form you shared and hope that will put me in the queue for consideration when they do reopen. Everything is going well for me now but I also need to plan ahead. Interesting that they specifically ask about the TP53 gene. I do have that protein/DNA alteration. I wonder if having this alteration is a good or bad prognosticator for the trial drug? A month in the hospital in Bethesda sounds like torture.
Hugs, Susan
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Susan, Ive been watching your move into your next trial and how happy you were to be accepted to this one - these early results are wonderful for you!
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