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Are you currently (or have you been) in a Clinical Trial?

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  • weninwi
    weninwi Member Posts: 748
    edited February 12
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    cure-ious,

    Thank you for posting the link re T-cell therapy. Very interesting and promising.

    It sounds like you and your MO work as a team regarding decisions like adding Celebrex and the supplement enobosarm to your treatment regimen. Do you think your situation is fairly unique? I've been reluctant to even bring up the topic with my MO as I anticipate a clear "No". And I've been reluctant to make such decisions independently without my doctor's full knowledge and support.

  • cure-ious
    cure-ious Member Posts: 2,736
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    Dear Saulius, How great to hear from you! Please comment more often!!! I also feel we all need something different, we basically have the anti-estrogens, a bit of targeted drugs for PI3KCA mutations, and then its off to chemo for us! something big has to hit in immunotherapy, and this one looks really good…

  • cure-ious
    cure-ious Member Posts: 2,736
    edited February 14
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    Hi WeninWI- Well, not really, I have learned I am the type to jump in without any prior discussion, and ask for forgiveness afterwards. In each case where I tried a new supplement, it was my research. and/or friends here, that suggested trying Celebrex, pitavastatin, and enobosarm. My MO would say the TMs are creeping up, we will see what the next scans show, and then at the next month's appointment she'd say "Hey. Your TMs went DOWN!" and I would say "yeah, would you like to know why?!"

    … I know what you mean about not messing with things without your MOs approval, but I felt confident in the science behind what I was trying, plus I did check first to see if there were any published contra-indications about mixing these drugs. To her credit, my MO didn't have any problem with what I tried, and just mostly wanted to make sure I wouldn't give up on the Verzenio. And yes, had I thought about it early enough to ask in advance, it would not be surprising if my MO had cautioned against trying enobosarm- its not an FDA approved drug, so you don't know that what you buy is what the label says it is, and in order to respond you have to have at least 40% androgen receptors, and I don;'t know the level of AR expressed in my cancer, altho its more likely than not to be the case. So I needed to be willing to accept responsibility for my decisions, of course, and regardless I understand she needs to know everything I take.

    I read that TMs and ctDNA changes happen, on average 4-5 months before scans show clear progression, so it seems that then is not the time to panic, but rather a good time to try adding something In my case, though, the bone scan indicated progression, so I wanted to act fast, and there wasn't a suitable clinical trial available- but fortunately so far this whole kitchen sink of chemicals that I'm taking seems to be holding things steady..

  • bsandra
    bsandra Member Posts: 1,003
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    Dear cureious, thanks a lot for encouragement, I always follow this amazing thread, gather knowledge from you guys and then read around in the internet:) The diversity of bio-tech industry is crazy but seems still to be in an infant-stages. One day they should explode, and better sooner than later. I reckon many things are not about the money - it is about mindset and paradigm shift. I just wish all of you guys, and my wife, would get to see it and be cured - one of my two wishes for 2024 and on:) Hugs,

    Saulius

  • perky2020
    perky2020 Member Posts: 72
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    Hi All!

    I wanted to give an update on the trial I am on.

    Just got my first scan results back and you have it be happy when you onc starts with, "Good News!"

    I have been it for 8 weeks, during that I had to take a break because white blood cell count was too low. So really only on the meds for 5 weeks.

    Ca27-29 went from 265 to 142

    CEA from 18 to 5 (normal range)

    Scans show liver mets smaller by 1/3 to 1/2. Unfortunately many of the bones mets are slightly bigger and a couple of new ones. But I am thinking it will take more time to affect the bone.

    All in all I am so happy! Keeping my fingers crossed it continues to work!!

    Xxoo,

    Allison

  • rk2020
    rk2020 Member Posts: 690
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    @perky2020 Thats great. I look forward to hearing more good news in the future. How are your side effects from PF-07248144?

  • perky2020
    perky2020 Member Posts: 72
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    Rk2020 - so far no really big SEs. Fatigue, a bit of cognitive fog, eyesight somewhat affected..... but these are all similar SEs to what I have with Ibrance/Faslodex.

  • cure-ious
    cure-ious Member Posts: 2,736
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    Hi Allison, What an interesting trial! I had not heard of Kat6 acetylation inhibitors playing a role in breast cancer, it sounds like they are trying to position them for endocrine-resistant MBC. This is one of the new AI-designed cancer drugs.

    "For ER-positive HER2-negative breast cancer, Pfizer’s PF-07248144 showed three partial remissions said to be confirmed and durable, among 12 evaluable subjects, according to a poster at ASCO. Two of those
    responses were in combination with Faslodex, whereas there were no remissions in 10 patients who had NSCLC or prostate cancer." Clearly its early days, but this looks very good for ER-positive MBC! Are there any requirements or biomarkers that indicate this drug should be useful?

    Please continue to update us for this trial…

  • perky2020
    perky2020 Member Posts: 72
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    Cure-ious - no biomarkers that I am aware of indicating KAT6 would be useful. Good question though, I will ask the study Oncologist. I am in arm d that combines the 3 drugs. Faslodex that we are all familiar with, a CDK4 (PF-07220060) and the KAT6 (PF-07248144).

    The CDK4 has been combined with a CDK2 and I understand has had a great response. They have just opened a new trial of that combination for second line only. Seems that there are quite a number of trials going on for second line after CDK4/6. Hopefully we will get lots of good news at ASCO this year.

  • cure-ious
    cure-ious Member Posts: 2,736
    edited February 16
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    Oh, Perky, I didn't even notice they have an arm with the other Pfizer drug! That CDK2-4 combo pill has been in clinical trials FOREVER, and several people here have been in it, all I remember is it having horrific side effects from just waayyy too high a dose-obviously they have figured the actual tolerated dose now. The CDK2 inhibitor is considerably more potent than Ibrance so we knew they could cut it down… that they can even now combine it with another drug is very very interesting!

    How did you learn about this trial? I'm definitely putting this one on my list, if its still offered to later stage patients when I would need it…

    PS For those outside the US who may be interested in the trial perky is on, it is also offered in Australia, Japan, South Korea, and China

  • cure-ious
    cure-ious Member Posts: 2,736
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    Small trial still early on is reporting a good result for Her2-negative MBC patients treated with a combination of two checkpoint inhibitors (Nivo and Ipi) together with an HDAC (histone deacetylase) inhibitor (entinostat)- for TNBC the ORR was 40%! Starting to see some immunotherapy responses for ER+MBC as well…

    https://www.insideprecisionmedicine.com/topics/oncology/novel-drug-combo-offers-hope-for-advanced-her2-negative-breast-cancer/

  • perky2020
    perky2020 Member Posts: 72
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    Cure..ious -

    My Oncologist found the trial as it is being offered in the Hospital where she works (Swedish). Yes, it seems like they understand the dosage as it relates to SE's though are still working on the ideal dosage in this combination.

    Here is a link to the trial I am on for those interested: https://clinicaltrials.gov/study/NCT04606446

    I understand PF-07248144 is Pfizer's CDK 4 and the CDK2 is PF-07104091. The trial I am on is just using the CDK4. Seems like there are a number of trials going with these 2 drugs in many different combinations. The trial oncologist is very excited about them and believes they will be FDA approved soon.

  • cure-ious
    cure-ious Member Posts: 2,736
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    awesome, perky, thanks! I realized I could take no combination of these drugs that includes Faslodex or Femara (due to ESR1 mutation), however if they are looking good this far along, then probably some combination trials with oral SERDS will open up, will keep an eye out for that- sounds like you have a very good oncologist there!!!

  • jsniffs
    jsniffs Member Posts: 136
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    Quickly checking in because it's been a while. I need to update my signature. Basically, Gem/Carbo worked for a bit, but then I had wildfire 🔥 spread of skin mets. Other stuff happened too, mega lymphedema, I needed a blood transfusion, and I have bilateral pleural effusions that need to be drained. I have an AKT1 mutation and converted from ER+ to triple neg a while back, so since Nov, I was trying to get provider buy-in to try the combo taxol+capivasertib. I think it's in or soon to be in phase 3 trials now for triple neg, but I'm not eligible. However, both drugs are FDA approved. It was a long story and some luck to get to this point, but I finally got a second opinion who gave the blessing, and amazingly insurance approved (taxol + capivasertib + faslodex were ordered but I just refuse the faslodex). I'm in my 4th week and skin mets are significantly improved, and I'm starting to be more active. I'm keeping the faith for other improvements. I wanted to make sure other people were aware of this possible option.

  • rk2020
    rk2020 Member Posts: 690
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    @jsniffs Good for you for not lying down and taking the first no. I look forward to hearing how you do in this combination. Best wishes for continued good results!!

  • weninwi
    weninwi Member Posts: 748
    edited February 29
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    jsniffs,

    I've been thinking of you lately since haven't seen any posts for a while. So happy to learn you persevered in getting a second opinion and the new treatment is working. My thoughts and prayers are with you.

  • figtree
    figtree Member Posts: 34
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    @jsniffs Kudos to you for advocating for yourself and succeeded. Capi+ taxol has been in a phase 3 trial (CAPItello-290) since 2019 and the study is ending March 2024. So we probably will hear the results very soon! Please keep us posted how you do with this combo! Thank you so much for sharing your experience!

    https://classic.clinicaltrials.gov/ct2/show/NCT03997123

  • bsandra
    bsandra Member Posts: 1,003
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    jsniffs, well that is an excellent example how things must be done. Example for everyone: patients, doctors, caretakers. You are amazing! Hugs, Saulius

  • nikkiqh
    nikkiqh Member Posts: 26
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    Hi all It's been a while since my last check-in before the TIL infusion. I started the infusion on 1/5 and yesterday I did a whole body PET scan.NO MIRICALS. It didn't work on me. My liver is a total mass now. It started with 2 tiny spots in March last year and after a whole year of hard working it has become a piece of Swiss cheese. The damn thing has also grown to my lung and pericardium causing pleural effusion. I'm really disappointed because my bone pain has reduced a lot. I truly feel it's working but the scan says otherwise. My MO says I need to start Taxol immediately.

  • cure-ious
    cure-ious Member Posts: 2,736
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    Oh, Nikkiqh, that is awful!!! With immunotherapy they say it can look worse before it looks better, do your clinical trial docs say whether its worth further scans or that you might get improvement later after starting chemo?! I have read subsequent treatments can work better after IO, even if it didn't work, and therefore they do see an overall survival advantage with checkpoint inhibitors. In terms of chemo, is Enhertu another option? I'm very sorry it didn't work well, but we all appreciate you coming back here to tell us what's going on, and I hope the next treatment does much better.

    You have been a real pioneer taking now two clinical trials. Hopefully when you finish with chemo there will be better options available…

  • smallmoments
    smallmoments Member Posts: 32
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    I'm very sorry to hear this Nikkiqh. I hope the next steps will work quickly. Thanks for letting us know how you are. Will be thinking of you.

  • nikkiqh
    nikkiqh Member Posts: 26
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    we have been monitoring for 3 months. if the TIL's really working on the liver, we expect a more stable scan. Mine is like exploding with new spots everywhere. I hate to admit It doesn't look right. I mean I don't regret my choice. This is a real personal treatment I could ever find. I'm willing to take my chances. I actually just jump into another trial of TCR-Tcell now. Only started the screening process. I couldn't just sit and wait for the result while having chemo. I still feel a lot of life in this body.

  • irishlove
    irishlove Member Posts: 475
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    @nikkiqh Oh damn that's a upsetting trial result. You sure are my hero for forging ahead with another trial. I'm so sorry but hopeful that the next treatment works perfectly for you. Hugs and if you accept them, prayers.

  • bsandra
    bsandra Member Posts: 1,003
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    Dear nikkigh, so sorry that scans after TILs were not as expected, this is really awful:/ Is there some info coming from investigators or your MO why they guess these scans look like that? Could that be not cancer spread but TILs attacking your organs? Let's hope the next trial fixes things asap, or there's also Enhertu that could be very effective? Hugs, Saulius

  • rk2020
    rk2020 Member Posts: 690
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    @nikkiqh What more can I say that hasn’t been said already? So disappointing but like you said, you still feel like you’ve got a lot of life left. Use that energy to find your miracle drug. Hugs. Regina

  • nikkiqh
    nikkiqh Member Posts: 26
    edited March 26
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    unfortunately we still have very limited answers to TIL failure. I mean my TIL had robust reaction in the lab. and until today they are still circulating in my body. I had 4 rounds of IL2 and 3 rounds of Keytruda. That's tons of boost. Why TILs do not attack my cancer? No one knows. I wish I had a stable scan. I don't have time now. I have to move on to chemo or I'm going to die very soon.

    Thank you for all your kind words and prays. I wish the same to everyone who is experiencing the same hardship.

  • cure-ious
    cure-ious Member Posts: 2,736
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    nikkiqh What TCR-T trial are you finding interesting to apply for? You have more clinical trials experience than anybody right now, and I wonder if they direct you to other options? whether for right now or for after things hopefully settle down with chemo. I still hope the burst of immune activity will synergize with a chemo in the next step. Please let us know what you end up trying next!

  • smallmoments
    smallmoments Member Posts: 32
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    Hi All. It's been a while since I logged in. I've been on the PIK3CA targeted therapy trial RLY-2608 for 18 months but my time on this drug is winding down (TMs are rising and 2 liver lesions are slowly increasing in size). My MO and I decided to stay the course since the growth has been very small and nothing new seen in scans. Interestingly, new Guardant test showed higher PIK3CA and the ESR1 mutation has disappeared (or has gone down to undetectable amounts) compared to the first Guardant results (taken when I progressed on my first line, Ib+Let). In any case, we will see what the May scans look like. But the options going forward would be Truqap (to target PIK3CA) or another AI (since ESR1 disappeared) + an mTor inhibitor. Trying not to think too much ahead and just take one day at a time. . . .

  • rk2020
    rk2020 Member Posts: 690
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    @smallmoments I know it’s always hard to hear that you might be progressing but I’m fascinated by your results so far. 18 months and counting on a trial drug? That’s a win in my book. ESR1 is now undetectable? I think that’s another win as it can open up other options. I find it so interesting that the drug your on kicked ESR1’s butt. I wish you the best possible outcome.
    As an aside, I’m taking everolimus (mTOR inhibitor) and so far it’s a pretty easy drug. I’m so sensitive to drugs that I started at the lowest dose with the intention of increasing the dose after a few weeks. Unfortunately for me, I’ve got other issues we are addressing so we have yet to increase my dose.

  • cblaurenceauthor
    cblaurenceauthor Member Posts: 11
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    Hi everybody,

    It's time for me to consider clinical trials. I have more progression in my liver, and my oncologist is suggesting we beat it back with 4 rounds of Halaven first, then she'd feel comfortable with the 21-28-day washout period.

    I am ER+ PR- HER2-. (I have a liver biopsy tomorrow, so that might change. Fingers crossed for HER2+!) I have the FGFR1 amp, ERBB2 mutation, CDK6 D233E. Not much to target there. I do have a history of everolimus-induced pneumonitis which eliminates me from many trials. Halaven will be my fifth line, also making eligibility tough.

    The way I see it, the order of potential effectiveness would be: targeted, general chemotherapy, vaccines, immunotherapy. Do I have that right?

    I would love to find a phase 2 trial, but beggars can't be choosers. It's getting hairy here in Cancerland, and I want to make the best decision for me, not take the first trial offered or even the most convenient.

    I've been reading through old posts and learning a bunch. If anyone has advice for a newbie, I'm all ears. Thanks for your time.

    Cherilee