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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 11/3/2015 AC Hormonal Therapy 2/4/2016 Femara (letrozole) Targeted Therapy 2/4/2016 Ibrance (palbociclib) Immunotherapy 12/22/2018 Hormonal Therapy Faslodex (fulvestrant)
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Nov 16, 2021 06:26PM NicoleRod wrote:

So if its fast tracked..(Saulius talked about this too in the liver thread).... what does that mean how soon would it be approved none of the articles i read about it say it?

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 **TNBC AUG 2021 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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Nov 16, 2021 08:07PM - edited Nov 17, 2021 07:10AM by Cure-ious

Nicole, If FDA approves it as breakthrough for TNBC, it means that they agree the data show that the drug is significantly better than standard-of-care, and then the FDA would work closely with the company to get it through the clinical trials as fast as possible. With it being already "fast-tracked", it just gets an even bigger push. Bestbird said this was one of the top "hot topics" for TNBC at the last San Antonio meeting, so there is a lot of excitment for this drug.

It is known from HIV-1 infection trials (CCR5 is a receptor for HIV-1 entry into cells) that leronlimab is effective and safe. In the literature it has been reported that CCR5 inhibition also boosts the immune response, so it may work even better when combined with checkpoint inhibitor immunotherapy.

With all that said, there is a way you may be able to get it - the link below describes an Expanded Access Compassionate Use Trial, designed for 30 patients. It would be given (by your MO?) in combination with physician choice chemo (eg, eribulin, gemcitabine, capecitabine, paclitaxel, nab-paclitaxel, vinorelbine, ixabepilone, or carboplatin). This trial is sponsored by the company that makes Leronlimab, and they just reported it doubles the response time to Trodelvy, so presumably they also support using that as physician's choice.

Here is the link to the trial:

https://clinicaltrials.gov/ct2/show/NCT04313075

And here is the link discussing the data that led them to file for Breakthrough Designation:

https://www.targetedonc.com/view/leronlimab-applic...



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Nov 17, 2021 12:45PM Myshadow wrote:

Nicole- I don't know if my experience with Leronlimab will help at all, since I'm using it under the “Right to Try" act. I'm ER+ not TNBC. I contacted Cytodyn hoping to get into the solid tumor trial. They requested a tissue sample from my cancer center. They tested it for CCR5 and also PDL1. I was CCR5 positive. At that point, the trial was put on hold due to Covid (October, 2020). I contacted Cytodyn again in April 2021 and was told they were only doing the TNBC trial at that time. They said I could get it faster by using Right to Try. My MO took over at that point and filled out the paperwork, which I had to sign. They send the drug to my cancer center - no charge to me. I administer two shots in my abdomen once a week.

I started it as mono therapy in June and added Faslodex in July (my MO likes to introduce one drug at a time to monitor side effects). I added Verzenio in October. I honestly do not know if it is working, but I can tell you I felt fantastic all summer. My blood counts and metabolic panel finally returned to normal range for the first time since MBC diagnosis. Unfortunately, my CEA marker keeps going up. It has always been a good indicator of progression so that is troubling. My MO wanted me to stop Leronlimab temporarily when I started Verzenio - again to track side effects. My blood counts tanked after two weeks and I feel horrible. Emotionally, it's tough since I felt so good before Verzenio. I'm adding the Leronlimab back in next week.

As far as side effects, I experienced a bit of constipation and temporary increase in bone met pain. Unfortunately I get no guidance or testing from Cytodyn since I'm not in a trial. I did speak with a doctor at Huntsman Cancer Institute as they did a small TNBC trial there. He did mention there is a tumor flare phenomenon associated with this drug since it is changing the tumor micro environment. That could explain the CEA increase and also more FDG uptake on my recent PET scan. The problem is I don't really know for sure if it's progression or flare and I hate not knowing. I wish I could say definitively whether or not it is working, so I could wholeheartedly recommend it. We could all use a better treatment with minimal side effects. I believe it can be combined with most chemos and even immunotherapies if you are PDL1. I will try to update when I know more. Sorry for the long post. 🤪


Was triple positive. Now ER+/ PR-/ HER2-. Currently on Fulvestrant and Leronlimab injections. Added Verzenio to the mix Oct. 2021. Dx 10/9/2008, IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (FISH) Dx 10/2014, IDC, Left, Stage IIIC, Grade 2, ER+/PR+, HER2+ (FISH) Dx 8/7/2017, Stage IV, metastasized to bone, Grade 2, ER+/PR-, HER2+ (FISH) Targeted Therapy 11/9/2017 Kadcyla (T-DM1, ado-trastuzumab) Dx 7/14/2020, Stage IV, metastasized to brain Radiation Therapy 7/27/2020 External: Brain Surgery Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy Herceptin (trastuzumab) Radiation Therapy Whole-breast: Breast Surgery Lymph node removal: Left Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy Arimidex (anastrozole) Hormonal Therapy Femara (letrozole) Hormonal Therapy Aromasin (exemestane) Radiation Therapy External: Lymph nodes Radiation Therapy External: Bone Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy Perjeta (pertuzumab) Chemotherapy Xeloda (capecitabine) Targeted Therapy Tukysa (tucatinib) Targeted Therapy Herceptin (trastuzumab) Radiation Therapy Brain Targeted Therapy Verzenio Hormonal Therapy Faslodex (fulvestrant)
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Nov 17, 2021 01:33PM NicoleRod wrote:

MyShadow...does one have to be PDL1 positive? Bc I am showing negative now.... also would I be eligible for Right To try??

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 **TNBC AUG 2021 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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Nov 17, 2021 02:00PM BevJen wrote:

Nicole,

Google federal right to try. There's lots of info there about eligibility.

Microwave Ablations,Liver 3x ;Radiation Therapy to Femur (Both) April 2021; total hip replacement (R) and placement of rod (L) to stabilize femur both sides; immunotherapy (single agent - keytruda) Dx 11/2003, ILC, Left, Stage IIIC, 13/18 nodes, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+, HER2- Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/5/2019 Targeted Therapy 7/31/2019 Ibrance (palbociclib) Immunotherapy Keytruda (pembrolizumab) Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Radiation Therapy
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Nov 17, 2021 02:13PM Myshadow wrote:

I am PDL1 negative. I’m not sure why they tested me for that. Maybe just to see if they can combine with immunotherapy drugs? It didn’t prevent me from getting access to Leronlimab.

As far as Right to Try - I wasn’t completely out of other options yet. I had to sign a consent form that stated I was using an experimental drug under Utah’s Right to Try Act.It basically states I have a terminal illness and I’m aware that I could have a negative outcome and it could even hasten death. 😬 It lists possible side effects and outcomes. It also protects them and my doctor from being sued. You would need to check the laws in your state to determine if you could get access. Your MO might know. They did tell me it is fairly easy to get access in Utah. I feel lucky that they are providing the drug at no cost. Sometimes the patient has to cover the cost of the drug. Insurance definitely would not cover it!

I did check with my insurance company to verify it wouldn’t prevent me from being approved for other SOC treatments if/when this one fails.


Was triple positive. Now ER+/ PR-/ HER2-. Currently on Fulvestrant and Leronlimab injections. Added Verzenio to the mix Oct. 2021. Dx 10/9/2008, IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (FISH) Dx 10/2014, IDC, Left, Stage IIIC, Grade 2, ER+/PR+, HER2+ (FISH) Dx 8/7/2017, Stage IV, metastasized to bone, Grade 2, ER+/PR-, HER2+ (FISH) Targeted Therapy 11/9/2017 Kadcyla (T-DM1, ado-trastuzumab) Dx 7/14/2020, Stage IV, metastasized to brain Radiation Therapy 7/27/2020 External: Brain Surgery Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy Herceptin (trastuzumab) Radiation Therapy Whole-breast: Breast Surgery Lymph node removal: Left Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy Arimidex (anastrozole) Hormonal Therapy Femara (letrozole) Hormonal Therapy Aromasin (exemestane) Radiation Therapy External: Lymph nodes Radiation Therapy External: Bone Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy Perjeta (pertuzumab) Chemotherapy Xeloda (capecitabine) Targeted Therapy Tukysa (tucatinib) Targeted Therapy Herceptin (trastuzumab) Radiation Therapy Brain Targeted Therapy Verzenio Hormonal Therapy Faslodex (fulvestrant)
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Nov 17, 2021 02:40PM NicoleRod wrote:

Thanks Cure...but wouldn't it have shown on my Tempus if I had CCR5???

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 **TNBC AUG 2021 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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Nov 17, 2021 02:52PM Cure-ious wrote:

CCR5 is expressed in more than half of all breast cancers, and >95% of TNBC. The trial confirms the minimal level expression they need for response, this is not a mutant gene they are talking about .

The trial inclusion list says no/low PDL1, presumably because high PDL1 should be on checkpoint inhibitors

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Nov 17, 2021 03:02PM BevJen wrote:

The federal right to try act now supersedes any state laws, so you should check that and not state of Virginia laws. It used to be state by state, but no more.

Microwave Ablations,Liver 3x ;Radiation Therapy to Femur (Both) April 2021; total hip replacement (R) and placement of rod (L) to stabilize femur both sides; immunotherapy (single agent - keytruda) Dx 11/2003, ILC, Left, Stage IIIC, 13/18 nodes, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+, HER2- Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/5/2019 Targeted Therapy 7/31/2019 Ibrance (palbociclib) Immunotherapy Keytruda (pembrolizumab) Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Radiation Therapy
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Nov 17, 2021 03:05PM Myshadow wrote:

Dee- thanks for those links. I always thought expanded access only applied to FDA approved drugs.

I'm glad they are finally recognizing the need to broaden trial eligibility requirements. It frustrates me that they are allowed to “cherry pick" the patients they have pre-determined will have the best outcomes. How will they know if a drug will be effective for brain mets if those patients are excluded. They could even separate the patients into different categories when they are gathering data to show how well the drug works on different metastatic sites.

I'm super frustrated to learn that Bayer is not moving forward with ErSO. I was hoping that it might be the golden ticket to making MBC an actual “chronic disease". I guess my expectations are too high 🤦🏻♀️.


Was triple positive. Now ER+/ PR-/ HER2-. Currently on Fulvestrant and Leronlimab injections. Added Verzenio to the mix Oct. 2021. Dx 10/9/2008, IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (FISH) Dx 10/2014, IDC, Left, Stage IIIC, Grade 2, ER+/PR+, HER2+ (FISH) Dx 8/7/2017, Stage IV, metastasized to bone, Grade 2, ER+/PR-, HER2+ (FISH) Targeted Therapy 11/9/2017 Kadcyla (T-DM1, ado-trastuzumab) Dx 7/14/2020, Stage IV, metastasized to brain Radiation Therapy 7/27/2020 External: Brain Surgery Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy Herceptin (trastuzumab) Radiation Therapy Whole-breast: Breast Surgery Lymph node removal: Left Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy Arimidex (anastrozole) Hormonal Therapy Femara (letrozole) Hormonal Therapy Aromasin (exemestane) Radiation Therapy External: Lymph nodes Radiation Therapy External: Bone Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy Perjeta (pertuzumab) Chemotherapy Xeloda (capecitabine) Targeted Therapy Tukysa (tucatinib) Targeted Therapy Herceptin (trastuzumab) Radiation Therapy Brain Targeted Therapy Verzenio Hormonal Therapy Faslodex (fulvestrant)
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Nov 17, 2021 04:55PM NicoleRod wrote:

Im sorry Cure.....I don't know that I am understanding you...are saying "not a mutant gene" meaning it wouldn't be on my TEMPUS? I am confused..I just know I do not see that on my report....

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 **TNBC AUG 2021 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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Nov 17, 2021 05:04PM - edited Nov 17, 2021 05:17PM by Cure-ious

I have no idea if Tempus would note relative expression levels of CCR5 mRNA, but it doesn't matter, the clinical trial says you have to have it tested by immunohistochemistry (protein staining). They do the test, and the vast majority of TNBCs have it...

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Nov 17, 2021 05:34PM moth wrote:

Nicole, ccr5 is a gene that codes for a protein. This drug targets that protein & they're looking for expression of the protein, not gene mutations.

Similarly the gene cd274 codes for pd-l1 but we test for the protein, not the gene.

Does that help?

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External: Chest wall Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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Nov 17, 2021 09:39PM - edited Nov 17, 2021 09:40PM by Cure-ious

Yeah, what Moth said!!

Basically, the treatment is a monoclonal antibody, and they stain the cancer with the monoclonal to see if the protein is expressed and lights up the cell- they want at least 10% of the cells to show CCR5 expression. This is how they test for Her2-positive MBC, by staining cells with the her2 monoclonal antibody.

Because you are a converter (ER-positive to ER-negative) it would be of particular interest to know if your cancer responds well to Leronlimab, potentially even better than classical TNBC. These converter cancers tend to respond exceptionally well to checkpoint inhibitors, and Leronlimab not only has anti-cancer activity but also boosts the immune system, by inhibiting CCR5 in tumor-protecting immune cells. So would MBC converters also be exceptional responders to this drug? nobody knows...

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Nov 18, 2021 12:03PM NicoleRod wrote:

Well I get it....but..here is what my MO said :

I would prefer doing more standard therapy prior to trying a 'right to try drug'. Taxanes and trodelvy first would be my bet. We can start with one and then do the other. I don't think there is a right or a wrong. I won't feel comfortable giving you this at this point off of clinical trial as I have standard options for you

I don't know what to say to that..... I did say well why cant we "Right to Try" the Keytruda + Trodlevy...??? But no response yet...but personally how well will I actually even do on Keytruda when I am not PDL1 anymore... :(

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 **TNBC AUG 2021 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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Nov 18, 2021 02:04PM SusaninSF wrote:

Nicole,

I'm not a doctor but I think that Trodelvy alone is a fantastic drug. Really no need to do it with Keytruda as that could introduce other complications/SEs. Being on a trial also usually involves a wash-out period. Also, you can take Keytruda with a Taxol without being on a trial. I took Keytruda with Abraxane.

Hugs, Susan

Mets to brain, lung, liver, eye, femur bone. 1/6/22 started on ARX788 trial. Dx 2000, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 8/31/2000 Lumpectomy: Left, Right; Lymph node removal: Right, Sentinel; Reconstruction (right) Dx 2008, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 3/2/2008 Mastectomy: Right Dx 3/29/2014, Stage IV, metastasized to brain/bone/lungs/other, mets, ER+/PR-, HER2- (FISH) Hormonal Therapy 3/31/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/28/2014 External: Brain Chemotherapy 10/30/2014 Xeloda (capecitabine) Radiation Therapy 1/8/2015 External: Bone Radiation Therapy 6/6/2016 External Hormonal Therapy 11/16/2016 Faslodex (fulvestrant) Targeted Therapy 12/21/2016 Ibrance (palbociclib) Radiation Therapy 11/27/2017 External: Brain Hormonal Therapy 8/21/2018 Femara (letrozole) Targeted Therapy 8/21/2018 Piqray (alpelisib) Chemotherapy 4/23/2019 Taxol (paclitaxel) Chemotherapy 6/19/2019 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 10/23/2019 External: Brain Immunotherapy 10/25/2019 Targeted Therapy 2/18/2020 Trodelvy (sacituzumab govitecan-hziy) Dx 3/8/2021, Stage IV, metastasized to liver Hormonal Therapy 3/12/2021 Aromasin (exemestane) Targeted Therapy 3/16/2021 Verzenio Chemotherapy 9/8/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 11/2/2021 Halaven (eribulin) Radiation Therapy 12/21/2021 External: Bone Targeted Therapy 1/6/2022
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Nov 18, 2021 04:49PM NicoleRod wrote:

Thanks Susan..yes my MO already offered Taxol and Key... Abranxane has a shortage and I cannot get it..no one can unless they are already on it. Right now...I am just down..bc I didn't the results of my scan from today my MO was suppose to call.... and the IR in Washington DC already read it for the liver (her assistant told me) and now she is out tomorrow so I am not gonna have any results till Monday now :(

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 **TNBC AUG 2021 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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Nov 18, 2021 05:15PM Husband11 wrote:

Oh Nicole, that is terrible. I know we are on pins and needles the whole time waiting for results, but now to have to add on 3 more days. That is so unfair.

Concerned husband Dx 2008, Left, Stage IIIB, Grade 3, 7/14 nodes, ER+/PR+, HER2- Dx 5/2016, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Chemotherapy Hormonal Therapy Femara (letrozole)
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Nov 19, 2021 05:02AM Kattysmith wrote:

Nicole that is so frustrating to have to wait for results. I'm so sorry they are putting you through this. I hope that you can put your worries into a box, close it up tight, and shove it under the bed until Monday, so you can have a good weekend. xoxo

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 11/3/2015 AC Hormonal Therapy 2/4/2016 Femara (letrozole) Targeted Therapy 2/4/2016 Ibrance (palbociclib) Immunotherapy 12/22/2018 Hormonal Therapy Faslodex (fulvestrant)
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Nov 19, 2021 07:43AM SusaninSF wrote:

Nicole,

I don't know if this is a California law but we now get our scan reports automatically at the same time as our doctors.

Hopefully, someone will call you today.

Hugs, Susan

Mets to brain, lung, liver, eye, femur bone. 1/6/22 started on ARX788 trial. Dx 2000, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 8/31/2000 Lumpectomy: Left, Right; Lymph node removal: Right, Sentinel; Reconstruction (right) Dx 2008, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 3/2/2008 Mastectomy: Right Dx 3/29/2014, Stage IV, metastasized to brain/bone/lungs/other, mets, ER+/PR-, HER2- (FISH) Hormonal Therapy 3/31/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/28/2014 External: Brain Chemotherapy 10/30/2014 Xeloda (capecitabine) Radiation Therapy 1/8/2015 External: Bone Radiation Therapy 6/6/2016 External Hormonal Therapy 11/16/2016 Faslodex (fulvestrant) Targeted Therapy 12/21/2016 Ibrance (palbociclib) Radiation Therapy 11/27/2017 External: Brain Hormonal Therapy 8/21/2018 Femara (letrozole) Targeted Therapy 8/21/2018 Piqray (alpelisib) Chemotherapy 4/23/2019 Taxol (paclitaxel) Chemotherapy 6/19/2019 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 10/23/2019 External: Brain Immunotherapy 10/25/2019 Targeted Therapy 2/18/2020 Trodelvy (sacituzumab govitecan-hziy) Dx 3/8/2021, Stage IV, metastasized to liver Hormonal Therapy 3/12/2021 Aromasin (exemestane) Targeted Therapy 3/16/2021 Verzenio Chemotherapy 9/8/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 11/2/2021 Halaven (eribulin) Radiation Therapy 12/21/2021 External: Bone Targeted Therapy 1/6/2022
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Nov 19, 2021 09:23AM BevJen wrote:

Susan,

I believe that is federal law now. Reports are to be released at the same time to the clinician and the patient. However, from reading BCO, it sounds like not all facilities are doing this. I think this is because there are no penalties yet for clinicians who don't do this since regulations have not yet been established.

Probably worth it to ask your doctor for those inquiring minds who want to know. I get my stuff really quickly now, and it's a mixed blessing!

Microwave Ablations,Liver 3x ;Radiation Therapy to Femur (Both) April 2021; total hip replacement (R) and placement of rod (L) to stabilize femur both sides; immunotherapy (single agent - keytruda) Dx 11/2003, ILC, Left, Stage IIIC, 13/18 nodes, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+, HER2- Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/5/2019 Targeted Therapy 7/31/2019 Ibrance (palbociclib) Immunotherapy Keytruda (pembrolizumab) Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Radiation Therapy
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Nov 19, 2021 09:49AM Cure-ious wrote:

Whoo-Hoo, y'all... Abstracts for SABCS have been posted!!

https://www.sabcs.org/Portals/SABCS2016/2021%20SAB...


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Nov 19, 2021 09:58AM Husband11 wrote:

Cure-ious, is there an index for those pages?

Concerned husband Dx 2008, Left, Stage IIIB, Grade 3, 7/14 nodes, ER+/PR+, HER2- Dx 5/2016, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Chemotherapy Hormonal Therapy Femara (letrozole)
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Nov 19, 2021 10:08AM - edited Nov 19, 2021 10:08AM by NicoleRod

I posted my results in LIVER THREAD for all that were asking... love you all.

*** CURE...i know you don't frequent liver thread but if you could have a look at my post I would be grateful for your insights...

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 **TNBC AUG 2021 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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Nov 19, 2021 10:19AM - edited Nov 19, 2021 10:21AM by Cure-ious

Husband, I don't know about an index, but you can just search the page for keywords you are interested in, it searches all of the abstracts for you...

I just did that for ARV-471 (Dee's drug, the super ER-degrader), here is the summary of that trial (cutoff date was last June), looking good!! These are patients who progressed on Ibrance-Femara/Faslodex and were allowed up to 3 prior chemos..

"As of the data cutoff date, 6 of the 34 patients were continuing to receive study treatment, including 2 patients who had been on treatment for over 16 months. Two confirmed partial responses were observed among the 28 patients with baseline measurable disease and at least 1 on-treatment tumor assessment."

Conclusion: ARV-471 was well tolerated with no Dose Limiting Toxicity at total daily doses up to 700mg. ARV-471 demonstrated robust ER degradation in paired biopsy samples and encouraging clinical activity (41% CBR) in patients who received prior CDK 4/6 inhibitors.

ARV-471 is now being evaluated in the VERITAC Phase 2 monotherapy expansion at 200 mg and 500 mg once daily.

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Nov 19, 2021 10:23AM SusaninSF wrote:

Thanks, Cure-ious,

When I looked through the original agenda, it seemed like the only drug relevant to us was Samuraciclib, an oral CDK7 inhibitor. Reading the abstract starting on page 47, there were only 23 patients on the trial and the results were not spectacular.

Hugs, Susan

Mets to brain, lung, liver, eye, femur bone. 1/6/22 started on ARX788 trial. Dx 2000, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 8/31/2000 Lumpectomy: Left, Right; Lymph node removal: Right, Sentinel; Reconstruction (right) Dx 2008, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 3/2/2008 Mastectomy: Right Dx 3/29/2014, Stage IV, metastasized to brain/bone/lungs/other, mets, ER+/PR-, HER2- (FISH) Hormonal Therapy 3/31/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/28/2014 External: Brain Chemotherapy 10/30/2014 Xeloda (capecitabine) Radiation Therapy 1/8/2015 External: Bone Radiation Therapy 6/6/2016 External Hormonal Therapy 11/16/2016 Faslodex (fulvestrant) Targeted Therapy 12/21/2016 Ibrance (palbociclib) Radiation Therapy 11/27/2017 External: Brain Hormonal Therapy 8/21/2018 Femara (letrozole) Targeted Therapy 8/21/2018 Piqray (alpelisib) Chemotherapy 4/23/2019 Taxol (paclitaxel) Chemotherapy 6/19/2019 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 10/23/2019 External: Brain Immunotherapy 10/25/2019 Targeted Therapy 2/18/2020 Trodelvy (sacituzumab govitecan-hziy) Dx 3/8/2021, Stage IV, metastasized to liver Hormonal Therapy 3/12/2021 Aromasin (exemestane) Targeted Therapy 3/16/2021 Verzenio Chemotherapy 9/8/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 11/2/2021 Halaven (eribulin) Radiation Therapy 12/21/2021 External: Bone Targeted Therapy 1/6/2022
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Nov 19, 2021 10:36AM - edited Nov 19, 2021 10:40AM by Cure-ious

Hi Susan! Actually I was kinda blown away this year (only read thru the first hundred abstracts) of all of the updated reporting and how many trials are advancing, this to me seems WAY better than the last several years for SABCS. And remember, the ones that are most impressive will have been embargoed for press releases when the talks are given in December.

Regarding Samuraciclib, the CDK7 inhibitor, tested with fulvestrant on people who progressed from I-F, my first impressions on reading that were : 1) great news that there were few side effects, there were rumors for couple of years of bad SEs, so that's not true; 2) decent response in the trial, given how early it is and few patients tested, they aren't scaled yet for efficacy; 3) I agree with you, though, that these numbers do not rock your world the way some of the SERDs and ER degraders seem like they will be getting. If I were progressing on I-F, I would not want to go try a CDK7i with fulvestrant, I'd head over to the world of SERDs, ARV-471, etc., get better control on the endocrine part and then contemplate what to combine it with.

Imagine you have progressed from I-F to a SERD-CDK4,6 and then progressed again, yet the cancer still seems to be ER-dependent? You'd want other options- like combine the SERD with everolimus, or a CDK2 inhibitor, or a CDK7 inhibitor, go for something the cancer has not seen before. We need options for those who have run the course with CDK4,6i, but are still endocrine-dependent.

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Nov 19, 2021 10:57AM SusaninSF wrote:

Cure-ious,

Yes. I find this frustrating too. I have taken both Ibrance and Verzenio. Ibrance worked for almost two years. Verzenio, less than six months. Seems like most of the trials involve Ibrance plus whatever drug they are trialing. This way their numbers look great since Ibrance is such an effective drug on its own. We need more options for ER+ folks since we go through treatments relatively quickly, unlike HER2+ people who can stay on Herceptin and Perjeta for 10+ years. We keep saying, "Where are the FDA-approved oral SERDS?". Checked the Arvinas (ARV-471) site and they do not do any Early Access Programs.

Hugs, Susan

Mets to brain, lung, liver, eye, femur bone. 1/6/22 started on ARX788 trial. Dx 2000, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 8/31/2000 Lumpectomy: Left, Right; Lymph node removal: Right, Sentinel; Reconstruction (right) Dx 2008, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 3/2/2008 Mastectomy: Right Dx 3/29/2014, Stage IV, metastasized to brain/bone/lungs/other, mets, ER+/PR-, HER2- (FISH) Hormonal Therapy 3/31/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/28/2014 External: Brain Chemotherapy 10/30/2014 Xeloda (capecitabine) Radiation Therapy 1/8/2015 External: Bone Radiation Therapy 6/6/2016 External Hormonal Therapy 11/16/2016 Faslodex (fulvestrant) Targeted Therapy 12/21/2016 Ibrance (palbociclib) Radiation Therapy 11/27/2017 External: Brain Hormonal Therapy 8/21/2018 Femara (letrozole) Targeted Therapy 8/21/2018 Piqray (alpelisib) Chemotherapy 4/23/2019 Taxol (paclitaxel) Chemotherapy 6/19/2019 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 10/23/2019 External: Brain Immunotherapy 10/25/2019 Targeted Therapy 2/18/2020 Trodelvy (sacituzumab govitecan-hziy) Dx 3/8/2021, Stage IV, metastasized to liver Hormonal Therapy 3/12/2021 Aromasin (exemestane) Targeted Therapy 3/16/2021 Verzenio Chemotherapy 9/8/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 11/2/2021 Halaven (eribulin) Radiation Therapy 12/21/2021 External: Bone Targeted Therapy 1/6/2022
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Nov 19, 2021 11:48AM - edited Nov 19, 2021 12:15PM by Moissy

Dee -Great to hear that you got in! Thanks for forging ahead, which helps all of us. Wishing you the best!

Dx 2004, IDC, 6cm+, Grade 2, 0/1 nodes, ER+, HER2- Dx 2015, Stage IV, ER+/PR+, HER2-
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Nov 19, 2021 12:35PM moth wrote:

mTNBC near City of Hope - Phase 1 trial just opened for an oncolytic virus. Pts must have progressed on standard therapy

https://www.onclive.com/view/city-of-hope-opens-on...

https://clinicaltrials.gov/ct2/show/NCT05081492?te...


I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External: Chest wall Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone

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