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

Forum: Stage IV/Metastatic Breast Cancer ONLY —

Please respect that this forum is for members with stage IV/metastatic breast cancer only. There is a separate forum for caregivers and friends: Caring for Someone with Stage 4 or Mets.

Posted on: Nov 29, 2018 04:40AM

Kattysmith wrote:

I am about to start a clinical trial and am wondering about the experiences of others. I'm feeling a little rocky and at sea, because I've been in the care of a wonderful oncologist for the past three years, and I knew without a doubt that his prime objective was the same as mine - to keep me stable and maintain a good quality of life. It was all about me.

Now, I'm embarking on this trial on a different campus and with a different doctor. I really like the doctor who heads it (he is a close colleague of my oncologist and has conferred with him), but I not-so-secretly worry that the prime focus will not be on my well-being, that it will be secondary to the study objectives. My initial meeting with the CO pretty much dispelled my fear that I would be a lab rat, but the closer I get to starting, the more leery I get. I'm normally not anxious about treatments.

I haven't had any treatment at all for several weeks, because the last treatment was ineffective and my onc wanted to get me into a trial, so the waiting hasn't helped. I'm normally pretty chill about everything, including starting new treatments, but entering a clinical trial is a different kettle of fish.

What has been your experience? Have you felt cared for?

First diagnosed borderline Stage 2 IDC, left breast in 2003. No problems until a surprise (!) Stage IV recurrence in 2015! In addition to treatments listed below, I started monthly injections of Xgeva for bone support in July 2016. Dx 10/23/2015, Left, Stage IV, metastasized to other, Grade 3, 0/3 nodes, ER+, HER2- Chemotherapy 11/4/2015 AC Hormonal Therapy 2/5/2016 Femara (letrozole) Targeted Therapy 2/5/2016 Ibrance (palbociclib) Immunotherapy 12/23/2018 Hormonal Therapy Faslodex (fulvestrant)
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Jul 14, 2021 03:07PM AlabamaDee wrote:

GG27-so glad for abraxane approval and no reaction. 👌🏻🙌🏻💪🏻

Cure-ious, according to my trial NP the CERAN drug OP 1250 is doing well and has very good tolerability. She said my trial and the CERAN trial are good for those who have failed other serd trials because of the novel mechanism.

I did not get Dr Hamilton today so I don’t have statistics like know how long some of the patients have been on it. Here is a link to a video she did on OP 1250

https://www.onclive.com/view/dr-hamilton-on-the-mechanism-of-action-of-op-1250-in-hr-her2--metastatic-breast-cancer

Update- Bloodwork was good today and no new issues. 😊 Getting a speech evaluation tomorrow for word retrieval issues. I requested a referral from my PCP after reading an article on palliative care. I’m not in a crisis so now is the time to build myself up and take care of problems I have put off like getting counseling and assessment for coping and training for word retrieval.

Dee

Primary neuroendocrine breast cancer, on SERD trial ARV-471, failed Pfizer’s CDK 2/4/6 trial after 8 weeks Dx 5/23/2013, Right, 1cm, Stage IIB, Grade 2, 1/22 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 7/29/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 4/2019, Stage IV, metastasized to liver, ER+/PR+, HER2- Targeted Therapy 10/7/2020 Radiation Therapy External Chemotherapy Doxil (doxorubicin) Targeted Therapy Afinitor (everolimus) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane), Fareston (toremifene), Femara (letrozole) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Verzenio Chemotherapy Xeloda (capecitabine)
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Jul 16, 2021 03:01PM luce wrote:

kinda surprised by this because pembro and abemaciclib was a bust:

https://www.practiceupdate.com/content/palbociclib-pembrolizumab-and-letrozole-in-hormone-receptor-positive-metastatic-breast-cancer/120597

Dx 12/12/2016, ILC/IDC, Left, Stage IV, metastasized to bone/lungs/other, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Jul 16, 2021 03:04PM luce wrote:

wondering if that means low-carb diet or metformin could increase response or delay or reverse resistance:

https://www.practiceupdate.com/content/18f-fdg-petct-for-assessing-early-metabolic-response-in-hrher2-mbc-treated-with-cdk46-inhibitors/119680

Dx 12/12/2016, ILC/IDC, Left, Stage IV, metastasized to bone/lungs/other, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Jul 16, 2021 03:05PM - edited Jul 16, 2021 03:08PM by luce

this is what I'm planing to try next. My oncologist is intrigued and willing to help:

https://www.globenewswire.com/news-release/2021/01/19/2160624/0/en/Veru-Announces-Nature-Medicine-Publication-Demonstrating-that-Enobosarm-an-Androgen-Receptor-Targeted-Agent-Inhibits-Hormone-Receptor-Positive-Metastatic-Breast-Cancer-that-has-Bec.html

Batshit author and def full of questionable ideas but raises some interesting points:

http://haidut.me/?p=1380&fbclid=IwAR2o9Z5jOoQ-nK8TYOUrWZk12FUcEwdWUfSAAY6W-8pAhJvnn_h0diRocrU

Dx 12/12/2016, ILC/IDC, Left, Stage IV, metastasized to bone/lungs/other, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Jul 16, 2021 03:17PM AlabamaDee wrote:

Luce- I was on keto for a year prior to metastasis and when I started verzenio and faslodex. At 3 months scan my tumors grew/one had slight necrosis. my case does not support low carb making a difference. I stayed on keto through 2 more lines that failed then decided to enjoy carbs again. 😉

Dee

Primary neuroendocrine breast cancer, on SERD trial ARV-471, failed Pfizer’s CDK 2/4/6 trial after 8 weeks Dx 5/23/2013, Right, 1cm, Stage IIB, Grade 2, 1/22 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 7/29/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 4/2019, Stage IV, metastasized to liver, ER+/PR+, HER2- Targeted Therapy 10/7/2020 Radiation Therapy External Chemotherapy Doxil (doxorubicin) Targeted Therapy Afinitor (everolimus) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane), Fareston (toremifene), Femara (letrozole) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Verzenio Chemotherapy Xeloda (capecitabine)
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Jul 16, 2021 05:17PM Cure-ious wrote:

Hey Luce!! How high AR expression does one need to be eligible for enobosarm? And does the trial allow for a CDK4,6 inhibitor also?

Dx 10/2003, IDC, Stage IIB, ER+/PR+, HER2- Dx 7/2015, Stage IV, metastasized to bone, ER+/PR-, HER2-
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Jul 16, 2021 05:48PM luce wrote:

  1. I would just get it off label or buy it, not join a trial. Or try Masteron. I’m currently pausing Verzenio but I may restart and combine. Or combine with AI.
Dx 12/12/2016, ILC/IDC, Left, Stage IV, metastasized to bone/lungs/other, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Jul 16, 2021 07:20PM - edited Jul 16, 2021 07:28PM by Cure-ious

Luce, V has been like a wonder drug for you- how long have you been on it? I like the idea of mixing in some Enobosarm. Unfortunately this may not be a treatment for me, because my F1 report found an SF3B1 mutation, and I was reading those cancers fail to express BRD9, which is required for AR signaling. So maybe one reason that mutation gives breast cancer is because AR can't do its thing as a tumor suppressor... OTOH, maybe BRD9 is just low levels and Enobosarm would boost AR and be just the thing I need, there is no way to tell!

Dx 10/2003, IDC, Stage IIB, ER+/PR+, HER2- Dx 7/2015, Stage IV, metastasized to bone, ER+/PR-, HER2-
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Jul 20, 2021 06:45PM luce wrote:

I did not respond to Verzenio unusually long. I’m not sure why you keep thinking that. I was treatment naive, it was my first line, and I got about a year before my tumor markers went up again.

Dx 12/12/2016, ILC/IDC, Left, Stage IV, metastasized to bone/lungs/other, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Jul 20, 2021 10:06PM Cure-ious wrote:

Oh, I see, since you said you were now pausing V, I thought that meant you'd been on it continuously...

Dx 10/2003, IDC, Stage IIB, ER+/PR+, HER2- Dx 7/2015, Stage IV, metastasized to bone, ER+/PR-, HER2-
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Jul 21, 2021 11:48AM luce wrote:

yes, I’d been on it until recently because one of the oncology strategies post-progression is staying on it while adding other drugs

Dx 12/12/2016, ILC/IDC, Left, Stage IV, metastasized to bone/lungs/other, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Jul 21, 2021 05:35PM Cure-ious wrote:

Yep, I'm trying to do that too, switched in March from an AI to Faslodex, keeping with the Ibrance (now six years on). Added pitavastin, since it kills PTEN-neg cells that can be a problem for progression. Keeping an eye out for what next steps would be, some kind of SERD/CERAN/PROTAC trial, maybe with some V added to it.

Dx 10/2003, IDC, Stage IIB, ER+/PR+, HER2- Dx 7/2015, Stage IV, metastasized to bone, ER+/PR-, HER2-
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Jul 21, 2021 05:43PM - edited Jul 21, 2021 05:48PM by Cure-ious

A new ER-based therapy is under development, called ErSO. This drug works differently than endocrine therapy, rather than modulate estrogen signaling, it puts a chemical tag on the ER that supercharges an "unfolded protein response" in the tumor, causing the cells die but not affecting healthy cells. In mice, the drug kills both primary tumors and mets, and they have some suggestions it may work better than SERDs- tho still in early stages and not yet in trials, it has been licensed to Bayer..

https://www.fiercebiotech.com/research/bayer-s-bre...

some videos of cell killing here:

https://medicalxpress.com/news/2021-07-approach-er...


Dx 10/2003, IDC, Stage IIB, ER+/PR+, HER2- Dx 7/2015, Stage IV, metastasized to bone, ER+/PR-, HER2-
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Jul 21, 2021 07:38PM Moissy wrote:

Cure-ious - With the statin/PTEN research, have you come across any data that compared difference in effectiveness between pitavastatin and other statins?

Dx 2004, IDC, 6cm+, Grade 2, 0/1 nodes, ER+, HER2- Dx 2015, Stage IV, ER+/PR+, HER2-
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Jul 21, 2021 09:48PM - edited Jul 21, 2021 09:53PM by Cure-ious

Moissy, Pitavastatin does show some anti-cancer activities that are not seen with other statins. In addition, it does not compete with Ibrance to use the Cyp3A enzyme to be degraded, so there are no problems with cross-reacting with Ibrance, which was a problem for me when I developed an atorvastatin-exacerbated frozen shoulder and had to go off of atorvastatin completely. Pitavastatin has been no problem.

Pitavastatin can block cells with low/no P-TEN. P-TEN is a tumor suppressor that often gets switched off in breast cancer, and those are some of the cells that can develop resistance to endocrine therapy. Pitavastatin also reduces AKT and ERK signaling. Pitavastatin comes in 1-4mg doses and I am on the 1mg dose, (since I only take it for anti-cancer therapy), and have to hope it has some anti-cancer activity, but of course it might not be doing anything. I've only been on it for about eight months now.

https://pubmed.ncbi.nlm.nih.gov/33953560/

https://www.futurity.org/statins-kill-cancer-cells...

its anti-cancer effects should be strongest in a diet low in geranylgeraniol, tho I haven't done that

https://www.sciencedaily.com/releases/2017/07/1707...

https://www.bbc.com/news/uk-england-stoke-stafford.....




Dx 10/2003, IDC, Stage IIB, ER+/PR+, HER2- Dx 7/2015, Stage IV, metastasized to bone, ER+/PR-, HER2-
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Jul 22, 2021 12:06AM BSandra wrote:

Wow, Cureious, you are even faster than me (time difference?) - I also saw this ErSO thing in fiercebiotech:) Seems even too good to be true... maybe we need to write to prof. Shapiro and ask when they expect human trials to begin (his contacts were officially given in scienmag.com/new-approach-erad... Saulius

Since May'21:NED. Mar'21:axilla LN surgery. Sep'19-Mar'21:NED. Feb'19:recurrence, left breast,IBC. May'18-Feb'19:NED. Jun'18:DC/CIK. Aug'17:stage IV de novo at age 33. Dx 8/4/2017, IDC, Left, 6cm+, Stage IV, metastasized to liver, Grade 2, ER-/PR-, HER2+ (IHC) Chemotherapy 8/27/2017 Taxotere (docetaxel) Targeted Therapy 8/28/2017 Herceptin (trastuzumab) Targeted Therapy 8/28/2017 Perjeta (pertuzumab) Chemotherapy 3/12/2019 Taxotere (docetaxel) Surgery 7/22/2019 Mastectomy: Left Radiation Therapy 9/9/2019 Whole-breast: Lymph nodes, Chest wall Surgery 4/15/2021 Lymph node removal: Underarm/Axillary
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Jul 22, 2021 04:44AM Moissy wrote:

Thanaks for your helpful info as always, Cure-ious

Dx 2004, IDC, 6cm+, Grade 2, 0/1 nodes, ER+, HER2- Dx 2015, Stage IV, ER+/PR+, HER2-
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Jul 22, 2021 01:08PM Cure-ious wrote:

So, I've been wondering where the new trial is for ARV-471, the company (arvinas) said they were going to come out with one combining this drug (ER-PROTAC) with CDK4,6 inhibitor or Piqray or Everolimus, for 2nd-3rd line patients, was supposed to be out in the spring. Just read where they have now partnered up with Pfizer to get the drug through clinical trials and onto the market. Hope it goes faster now, tho its not surprising they would need a major pharma involved to push it into the clinic


Dx 10/2003, IDC, Stage IIB, ER+/PR+, HER2- Dx 7/2015, Stage IV, metastasized to bone, ER+/PR-, HER2-
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Jul 22, 2021 05:00PM elenas401 wrote:

pounds very interesting about ErSO but why can't they move things along a little faster to save lives? They got the covid vaccines out for emergency use in a hurry but money must be involved in cancer research so it goes at a snails pace. They should let people who are desperate take a chance as they did with the vaccines.

Dx 1/2017, Right, 6cm+, Stage IV, metastasized to lungs, Grade 3, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Chemotherapy Chemotherapy Taxol (paclitaxel)
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Jul 22, 2021 05:22PM NicoleRod wrote:

elenas...I am NOT getting political here ...but with the previous administration there were A LOT of things approved and pushed through for us...and now...nothing it's like things have come to a complete stop.

Dx 12/14 Stage 0, Grade 3, ER+/PR, HER2- (FISH),Dx 04/19, Stage IV mets to bone/liver, Hormonal Therapy 04/19 - 10/19 Ibrance/let/faslodex 10/19 Cryoblation on 2 of 4 tumors in liver. Dec 2019-May 2020 Xeloda Failed May-July 2020 - Doxil Failed Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) Dx 2/5/2019, IDC, Right, Stage IIA, Grade 3, ER+/PR-, HER2- Dx 3/2019, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 4/28/2019 Surgery Chemotherapy Doxil (doxorubicin) Chemotherapy Xeloda (capecitabine) Radiation Therapy Surgery Mastectomy: Left, Right
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Jul 22, 2021 06:15PM elenas401 wrote:

Just saw a BBC article on ErSO from today that said next step is human trials and if all goes well it could be available in A DECADE!! Seriously depressing to think it has to take that long.

Dx 1/2017, Right, 6cm+, Stage IV, metastasized to lungs, Grade 3, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Chemotherapy Chemotherapy Taxol (paclitaxel)
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Jul 22, 2021 06:19PM elenas401 wrote:

what if they would've taken a decade to get the covid vaccine out? Too many were afraid of getting the virus to take that long.

Dx 1/2017, Right, 6cm+, Stage IV, metastasized to lungs, Grade 3, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Chemotherapy Chemotherapy Taxol (paclitaxel)
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Jul 23, 2021 05:59AM - edited Jul 23, 2021 06:02AM by AlabamaDee

cure-ious

Wow. You are on top of things with my trial. Pfizer just paid 2 BILLION dollars for arv471. They must really believe in this drug.

https://www.thepharmaletter.com/article/arvinas-pens-2-billion-deal-with-pfizer-on-arv-471

I was supposed to be the arm with Ibrance but there was an eligibility issue with me taking faslodex 2 separate treatment times. I asked if I could switch to that arm to see if I got even more response with Ibrance and was told no. (I imagine they want to keep their single agent statistics looking good)

since I failed Pfizer's cdk 2/4/6 trial, I am not as concerned about missing Ibrance

FYI- I decided to invest a little in arvinas when I started to show stable disease. Good thing I bought some stock when it was lower 🤑😊😉

I go to my trial check on Monday. I will see what the Dr Hamilton says about how this will affect the timeline

Dee

Primary neuroendocrine breast cancer, on SERD trial ARV-471, failed Pfizer’s CDK 2/4/6 trial after 8 weeks Dx 5/23/2013, Right, 1cm, Stage IIB, Grade 2, 1/22 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 7/29/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 4/2019, Stage IV, metastasized to liver, ER+/PR+, HER2- Targeted Therapy 10/7/2020 Radiation Therapy External Chemotherapy Doxil (doxorubicin) Targeted Therapy Afinitor (everolimus) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane), Fareston (toremifene), Femara (letrozole) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Verzenio Chemotherapy Xeloda (capecitabine)
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Jul 24, 2021 09:00AM - edited Jul 24, 2021 09:02AM by Cure-ious

And Dee, they should be treating you like royalty, as you are contributing to the great response numbers coming out of their early trials, attracting all the interest (and now big bucks) from the major pharmas...

Dx 10/2003, IDC, Stage IIB, ER+/PR+, HER2- Dx 7/2015, Stage IV, metastasized to bone, ER+/PR-, HER2-
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Jul 24, 2021 12:05PM SondraF wrote:

In reading the Fierce Biotech article about ErSO there was another about a whole range of second gen SERDs in Phase III trials already which was relatively interesting, but probably old news to Cure-ious!

ErSO - looks like Bayer licensed it last September (based on their corporate news site), but Systems Oncology is interesting as they are using AI and large data sets to find and develop potential therapeutics in a faster way than more traditional approaches - e.g. fishing faster in less busy pools. Why is this news being recirculated 9 months after the original agreement was signed? New outcomes come to light or PR push in advance of paper publication or what?

"The closer we come to the negative, to death, the more we blossom" - Montgomery Clift Dx 9/27/2019, IDC, Right, 5cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Hormonal Therapy 11/28/2019 Femara (letrozole) Targeted Therapy 11/28/2019 Ibrance (palbociclib) Surgery Prophylactic ovary removal
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Jul 26, 2021 05:38PM GG27 wrote:

not great news today about ct scan. Liver mets are still growing one from 26 x 18 mm to 27 x 24 mm other from 23 x 16 mm to 31 x 27 mm and they brought along some friends. The plan is to keep on the trial for 2 more cycles as I had a hard time with the chemo end of it and had to change to the trial drug to 50%.

So the trial RN is trying to find out if they will let me stay on the trial or not. Either way, chemo tomorrow

Cheers dee

Dx 10/2008, IDC, Both breasts, 3cm, Stage IIB, Grade 2, 3/9 nodes, mets, ER+/PR+, HER2- Surgery 1/8/2009 Lymph node removal; Mastectomy: Left, Right Chemotherapy 2/1/2009 Other Radiation Therapy 7/5/2009 Whole-breast: Breast, Lymph nodes Dx 5/14/2014, IDC, Both breasts, Stage IV, metastasized to bone/liver/other, 9/20 nodes, mets, ER+/PR+, HER2- Chemotherapy Abraxane (albumin-bound or nab-paclitaxel)
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Jul 27, 2021 06:49AM AlabamaDee wrote:

oh Dee that report must have felt like a gut punch. I hope you get a good plan forward.


AlabamaDee

Primary neuroendocrine breast cancer, on SERD trial ARV-471, failed Pfizer’s CDK 2/4/6 trial after 8 weeks Dx 5/23/2013, Right, 1cm, Stage IIB, Grade 2, 1/22 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 7/29/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 4/2019, Stage IV, metastasized to liver, ER+/PR+, HER2- Targeted Therapy 10/7/2020 Radiation Therapy External Chemotherapy Doxil (doxorubicin) Targeted Therapy Afinitor (everolimus) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane), Fareston (toremifene), Femara (letrozole) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Verzenio Chemotherapy Xeloda (capecitabine)
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Jul 27, 2021 01:16PM Moderators wrote:

(((((GG27))))) please keep us posted. We're routing for you and sending good energy.

Your Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Jul 27, 2021 03:22PM D37 wrote:

Dee, I’m sorry to hear about your scan results. I hope your doctors can set you up with a plan to take care of your liver mets. Denis

Dx 7/2020, ER+/PR+, HER2+ Hormonal Therapy 8/11/2020 Chemotherapy Taxol (paclitaxel)
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Jul 27, 2021 10:50PM GG27 wrote:

thanks Dee, D37 & Mods for the kind words.

They are allowing me to stay on the trial at this point, yay, I really need to get these liver mets under control. My TM's went up a little bit, 20 points, my MO says it's basically stable. Chemo went fine today except for sitting around waiting for the pharmacy to get around to it for 90 minutes. MO is going to schedule a follow up CT for 5 weeks from now, not part of the trial protocol, she just doesn't want to leave things too long in case it's not working.

cheers, dee

Dx 10/2008, IDC, Both breasts, 3cm, Stage IIB, Grade 2, 3/9 nodes, mets, ER+/PR+, HER2- Surgery 1/8/2009 Lymph node removal; Mastectomy: Left, Right Chemotherapy 2/1/2009 Other Radiation Therapy 7/5/2009 Whole-breast: Breast, Lymph nodes Dx 5/14/2014, IDC, Both breasts, Stage IV, metastasized to bone/liver/other, 9/20 nodes, mets, ER+/PR+, HER2- Chemotherapy Abraxane (albumin-bound or nab-paclitaxel)

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