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 IV or Mets.

Posted on: Nov 29, 2018 07:40AM

Posted on: Nov 29, 2018 07:40AM

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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Jun 28, 2022 12:08PM mikainsb wrote:

Wow cure-ious! So, my cancer "hurts" starting at about 9:30pm, when I am starting to get ready for bed.

I mentioned this to my oncologist. I said, "I know you are going to think I am crazy or this is psychosomatic, but my cancer hurts mostly at night and when I am sleeping."

She said, "Cancer pain is always worse at night." She said it as if this was a really well-known and accepted fact.

And I kind of thought, that is interesting, but perhaps it is due to lack of distractions.

But now I am starting to wonder if this is actually a really scientifically relevant symptom. Not sure what to do with it. Personally I am a big big believer in sleep. I suspect rather than sleep deprivation, this conclusion (cancer is more active in sleep) will lead to important understanding that less, but very high quality sleep, is super important in having the body address cancer.


Thanks for sharing! I feel less crazy for "my cancer hurts at night" comment.

Dx 2008, DCIS, Left, Stage 0, ER+/PR+, HER2- Surgery 10/1/2008 Lumpectomy; Lumpectomy (Left) Chemotherapy 12/1/2008 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 4/1/2009 Breast Dx 7/1/2011, DCIS, 1cm, Stage IB, 0/30 nodes, ER+/PR+, HER2- Surgery 7/13/2011 Mastectomy; Mastectomy (Left); Mastectomy (Right) Chemotherapy 8/13/2011 Adriamycin (doxorubicin) Surgery 1/3/2012 Reconstruction (Left): DIEP flap; Reconstruction (Right): DIEP flap Dx 11/11/2015, Left, Stage IV, metastasized to bone, ER+/PR+, HER2- Targeted Therapy 3/1/2016 Ibrance (palbociclib) Hormonal Therapy 4/15/2016 Faslodex (fulvestrant) Targeted Therapy 6/25/2018 Afinitor (everolimus) Hormonal Therapy 6/25/2018 Aromasin (exemestane) Chemotherapy 9/2/2018 Xeloda (capecitabine) Hormonal Therapy 10/16/2019 Chemotherapy 6/22/2021 Hormonal Therapy 1/21/2022 Targeted Therapy 7/18/2022 Verzenio Surgery
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Jun 29, 2022 03:37PM - edited Jun 29, 2022 03:39PM by cure-ious

A new clinical trial has started up for those who progress on an AI plus CDK4,6 inhibitor. In this trial, patients will be moved to Fulvestrant and Abemaciclib (Verzenio), however they will take a month off before starting the Verzenio. this is because there have been many indications that even if resistance to CDK4,6i develops, it is quickly reversed when you go off of the drug. Or perhaps they will find resistance is rare and you don't even need the month off. Great that we will get eventually get an answer about that!

https://clinicaltrials.gov/ct2/show/NCT05305924


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Jun 29, 2022 03:45PM cure-ious wrote:

And a Phase 3 (already!) trial for Enobosarm with Verzenio for MBC, for secondline only : https://clinicaltrials.gov/ct2/show/NCT05065411



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Jun 29, 2022 04:01PM cure-ious wrote:

A new Natural Killer (NK) immunotherapy, with immunotherapy and/or chemo for TNBC, HER2-positive or HER2-low MBC:

https://clinicaltrials.gov/ct2/show/NCT05069935
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Jun 29, 2022 07:13PM candy-678 wrote:

Cure-ious--- I see the only location of the Fulvestrant/Verzenio trial you posted above is in Houston Texas. I was on Ibrance, then changed to a PARP, so I wonder if I could go back to a CDK (Verzenio) with my next progression. That way I would have had a CDK vacation and it may work again. I cannot travel from Illinois to Texas for that trial, but I wonder if my MO, and insurance, would let me try a CDK again. What do you think? Can we try a trial without being enrolled in the trial if the drugs are approved already ie Verzenio and Fulvestrant? I will save that info and ask my MO if it is a possibility when I have progression. I have another scan in August, though I hope I will still be stable.

April 2021 first progression and flip ER-/PR+ now. Current treatment as of Sept 2021 is Lynparza, Lupron (been on since Nov 2017), and Xgeva (been on since Nov 2017). Dx 6/2017, ILC/IDC, Left, 3cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Dx 9/2017, ILC/IDC, Stage IV, metastasized to bone/liver, 0/1 nodes, ER+/PR+, HER2- Hormonal Therapy 11/1/2017 Femara (letrozole) Targeted Therapy 11/1/2017 Ibrance (palbociclib) Hormonal Therapy 11/1/2017 Dx 4/2021, ER-/PR+, HER2- Targeted Therapy 9/1/2021 Lynparza (olaparib) Chemotherapy AC Surgery Lymph node removal; Mastectomy; Mastectomy (Left)
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Jun 29, 2022 09:01PM - edited Jun 29, 2022 09:04PM by cure-ious

Surely you could get Verzenio & Faslodex without a trial, and Verzenio even has some activity on its own, its very attractive to try?

But also, if you want a trial, the ARV-471 PROTAC with Ibrance trial is available in Chicago!! https://clinicaltrials.gov/ct2/show/NCT04072952


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Jun 30, 2022 03:12AM sondraf wrote:

Candy - I was wondering this too. The PARP detour for some of us.... then what? I wonder if they just don't know/haven't planned for it as its only recently the PARPs were approved for MBC. I haven't tried Faslodex yet, though, and I dont know if UK guidelines would allow me to circle back to a CDK4/6 at this time, though I am guessing not. Or at least not yet.

"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 11/28/2021 Lymph node removal (Right): Underarm/Axillary; Mastectomy (Right) Targeted Therapy 3/1/2022 Lynparza (olaparib)
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Jun 30, 2022 04:32AM karpc wrote:

Hi. I have a biopsy question. I flipped from er positive to triple negative a year ago although we think I’ve always had er positive in my liver (based on my first biopsy) and triple negative or low er positive in my lungs or I am a combo of both now. I have been on estrogen positive treatment for 4.5 years. Last year my lung tumor biopsy was triple negative (tumor was finally big enough to biopsy. Despite the flip, I went on Piqray and it worked for 1 year. I am facing progression now and need to change treatments. I will now be treated for triple negative and I have the pd-1 mutation. My onc wants another tumor biopsy tho. I don’t see the point. I live in Hawaii and don’t have clinical trial options. If I do keytruda with chemo next, it will attack both triple negative and estrogen positive tumors. If I get a biopsy and I am low estrogen positive on that particular tumor, I worry I won’t qualify for keytruda or other immunotherapies and the biopsy will backfire. It’s doubtful that I have any her2 in my tumors. Does anyone see an advantage for me to get another biopsy at this point? I don’t see my oncologists reasoning. Thanks so much! 💕

​May 2021 lung nodule flipped from ER+ to triple negative. Liver tumor may still be ER+ Dx 4/2016, IDC, Both breasts, 2cm, Stage IIA, Grade 3, 0/14 nodes, ER+/PR-, HER2- Surgery 5/17/2016 Lymph node removal; Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left); Reconstruction (Right) Chemotherapy 6/10/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 10/1/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 2/1/2018, IDC, <1cm, Stage IV, metastasized to liver/lungs, Grade 3, ER+/PR-, HER2- Radiation Therapy 2/2/2018 External Local Metastases 2/2/2018 translation missing: en.treatments.local_metastases.local_metastases_types.short_options.liver_stereostatic-body-radiation-therapy: Liver Targeted Therapy 2/16/2018 Ibrance (palbociclib) Hormonal Therapy 2/17/2018 Faslodex (fulvestrant), Femara (letrozole), Zoladex (goserelin) Chemotherapy 2/19/2020 Xeloda (capecitabine) Targeted Therapy 10/14/2020 Afinitor (everolimus) Targeted Therapy 6/1/2021 Piqray (alpelisib)
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Jun 30, 2022 08:59AM candy-678 wrote:

Sondra- I agree. With the PARP detour, what is next?? I have not asked my MO yet. 3 scans into Lynparza and I have had #1 scan stable, #2 stable, #3 shrinkage (by millimeters). So I don't know what my MO is planning next for me. I wonder if my insurance would approve going back to a CDK. My MO might say Yes, but insurance is the true decider.

Cure-ious-- Chicago is definitely closer. But that is still a 5 hour drive for me. I live in the south part of Illinois. I have never been in a trial, but if I do someday, it would probably have to be at my current cancer center. Due to travel restrictions-- finances, lack of support system, etc.

April 2021 first progression and flip ER-/PR+ now. Current treatment as of Sept 2021 is Lynparza, Lupron (been on since Nov 2017), and Xgeva (been on since Nov 2017). Dx 6/2017, ILC/IDC, Left, 3cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Dx 9/2017, ILC/IDC, Stage IV, metastasized to bone/liver, 0/1 nodes, ER+/PR+, HER2- Hormonal Therapy 11/1/2017 Femara (letrozole) Targeted Therapy 11/1/2017 Ibrance (palbociclib) Hormonal Therapy 11/1/2017 Dx 4/2021, ER-/PR+, HER2- Targeted Therapy 9/1/2021 Lynparza (olaparib) Chemotherapy AC Surgery Lymph node removal; Mastectomy; Mastectomy (Left)
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Jul 1, 2022 08:25AM bsandra wrote:

Dear Karpc, I absolutely get the dilemma. I think you should discuss your worries with your MO - is that possible? I know how knowledgeable you are but maybe you and your MO could draw some possible scenarios in this or that case, and maybe he'd convince you, or you would convince him?

Saulius

Since May2021: NED. Mar2021: local axilla LN recurrence.Sep2019-Mar2021:NED. Feb2019:local recurrence in left breast,IBC. May2018-Feb2019:NED. Jun2018:DC/CIK. Aug2017:stage IV de novo at age 33. Dx 8/4/2017, IDC, Left, 6cm+, Stage IV, metastasized to liver, Grade 2, ER-/PR-, HER2- 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; Mastectomy (Left) Radiation Therapy 9/9/2019 Whole breast: Lymph nodes, Chest wall Surgery 4/15/2021 Lymph node removal

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