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 16, 2022 01:24AM cure-ious wrote:

A paper in Nature from researchers at Stanford & UCLA reports that T-cells engineered with an IL-9 receptor are superior to natural T-cells in fighting tumors and can competitively take-over the immune system, meaning that they could eliminate the need for protocols that use chemotherapy and/or radiation to get rid of the immune system before introducing engineered T-cells in CAR-T or other immunotherapy regimens.

https://www.sciencedaily.com/releases/2022/06/2206...

https://www.nature.com/articles/s41586-022-04801-2


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Jun 16, 2022 10:20AM - edited Jun 16, 2022 10:26AM by savaloko

Good afternoon. What are the treatment options for the PIK3CA mutation? I got my test yesterday and this is the result... I understand that the frequency of the appel is negligible?

What does it mean? I'm on ribociclib/letrozole and my doctor wants to change the protocol to piqrey/faslodex. But is it worth it? Or to hand over analyzes on other mutations? Just a little grown tumor in the mammary gland.

Moreover, the main tumor of the mammary gland, which was back in 2019, has decreased and is stable to this day. But next to her, two incomprehensible gizmos became visible on her chest. And I don't know what it is.


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Jun 16, 2022 11:26AM - edited Jun 16, 2022 11:30AM by susaninsf

Had my CT scans yesterday, my third since being on ARX-788. It wasn't good. Progression in my lungs and one of my two liver tumors. Haven't spoken to my MO yet about it but I think it is likely I will have to switch treatments. The thing is, I've been feeling great. Taking four dance classes and five yoga classes a week. Walking the dog in the hills of SF every day. Grateful for the five months I've been able to build my strength back but wish it could have lasted longer.

Been combing through Phase I trials and haven't seen anything very promising that is within driving distance. Would love to hear any suggestions about promising trials.

Hugs, Susan

Mets to brain, lung, liver, eye, femur bone. Dx 2000, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 8/31/2000 Lumpectomy; Lumpectomy (Left); Lumpectomy (Right); Lymph node removal; 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; Mastectomy (Right) Dx 3/29/2014, DCIS, Left, 4cm, Stage IV, metastasized to brain/bone/lungs/other, mets, ER+/PR-, HER2- Hormonal Therapy 3/31/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/28/2014 External Local Metastases 4/28/2014 Brain Chemotherapy 10/30/2014 Xeloda (capecitabine) Radiation Therapy 1/8/2015 External Local Metastases 1/8/2015 Radiation therapy: 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 Local Metastases 11/27/2017 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 Local Metastases 10/23/2019 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 Other Chemotherapy 11/2/2021 Other Targeted Therapy 1/6/2022 Targeted Therapy 6/24/2022 Enhertu (fam-trastuzumab deruxtecan-nxki)
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Jun 17, 2022 08:51AM nicolerod wrote:

Susan are you trying to get into the T-Cell NIH trial?? I thought you were currently in a trial and the driug was working?

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- 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 4/29/2019 Surgery Chemotherapy Doxil (doxorubicin) Chemotherapy Xeloda (capecitabine) Radiation Therapy Surgery Mastectomy; Mastectomy (Left); Mastectomy (Right)
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Jun 17, 2022 09:46AM rosie24 wrote:

Susan, Sorry to hear about the lung and liver progression. Maybe there’s a chance you won’t have a treatment change yet? It stinks that you’re feeling so well on the trial, and weredoing well but you may have to leave it.

I start my trial on Monday. Feeling hopeful it can work on both my liver mets and bone mets The bone mets (ER+) increased on my recent chemo and the liver mets (ER-) were stable overall. I have increasing nerve pain in my legs and have had to up my gabapentin.

Dx 1/23/2019, DCIS/IDC, Left, 3cm, Stage IV, metastasized to liver, Grade 2, ER+/PR-, HER2- Hormonal Therapy 1/23/2019 Femara (letrozole) Targeted Therapy 1/24/2019 Ibrance (palbociclib) Surgery 12/3/2019 Lumpectomy; Lumpectomy (Left) Surgery 12/3/2019 Lymph node removal Radiation Therapy 3/17/2020 Whole breast Dx IDC/DCIS, ER-/PR-, HER2-
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Jun 17, 2022 01:59PM gg27 wrote:

Results from CT scan on Tuesday are still showing stable, liver numbers are still going up but MO feels that the liver is probably being taxed by trial drug & chemo, TM's have been rising as well, so it will be interesting to see what they are next week. They have always been quite accurate for me but the CT shows very stable.

I am the last patient on the trial drug & the drug co isn't particularly happy that they have to jump through so many hoops to keep me on it. They have no idea how many hoops I have to jump through just to be on the trial. Travel alone is 6 hours each way.

Health Canada, Stand up to Cancer and BC Cancer agency are finally working together to keep getting the drug to me. Tomivosertib along with Taxol or Abraxane has been approved & should be available soon as the trial met their goals several weeks ago. I will be starting cycle 16 next week. SE's are getting harder the longer I'm on it, neuropathy in the week of chemo is a bit brutal & I'm loosing my hair for the fifth time, but I'm still able to get out in the garden and do what I love so I will take. 7 years with bone, liver & retinal mets. 14 years with bilateral breast cancer.

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; Mastectomy (Left); Mastectomy (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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Jun 17, 2022 04:28PM susaninsf wrote:

gg27, So happy for you that you are still stable after 15 cycles! I hope we will be able to get access to Tomivosertib in the US.

rosie24, What trial are you going to be on?

Nicole, ARX-788 worked great but didn't last long. My first scan was great, second mixed, third unequivocal progression. I've only experienced tumor shrinkage on three treatments, Tamoxifen, Piqray, and ARX-788 but all three only lasted for five months. At this point, I'm grateful to have had five months of feeling great. And, despite the progression, I still have a lower tumor burden than when I started the drug.

Sent all my then-current records to the NIH for the T-cell trial but my MO said it would be too difficult given the ~4 month period that they need to create the medication.

Mets to brain, lung, liver, eye, femur bone. Dx 2000, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 8/31/2000 Lumpectomy; Lumpectomy (Left); Lumpectomy (Right); Lymph node removal; 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; Mastectomy (Right) Dx 3/29/2014, DCIS, Left, 4cm, Stage IV, metastasized to brain/bone/lungs/other, mets, ER+/PR-, HER2- Hormonal Therapy 3/31/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/28/2014 External Local Metastases 4/28/2014 Brain Chemotherapy 10/30/2014 Xeloda (capecitabine) Radiation Therapy 1/8/2015 External Local Metastases 1/8/2015 Radiation therapy: 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 Local Metastases 11/27/2017 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 Local Metastases 10/23/2019 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 Other Chemotherapy 11/2/2021 Other Targeted Therapy 1/6/2022 Targeted Therapy 6/24/2022 Enhertu (fam-trastuzumab deruxtecan-nxki)
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Jun 17, 2022 05:25PM - edited Jun 17, 2022 05:31PM by rosie24

Susan (and others here), this is the trial I'm going to be on:

https://clinicaltrials.gov/ct2/show/NCT04972981

I'm the first one on it at my location. Not sure I'm crazy about that, but I've jumped through the pretesting hoops and I'mready to get going.

GG, Great news on being stable. That's quite a drive to your trial location. Do you make it an overnight pre and post treatment? Do you still have your S2000?

Dx 1/23/2019, DCIS/IDC, Left, 3cm, Stage IV, metastasized to liver, Grade 2, ER+/PR-, HER2- Hormonal Therapy 1/23/2019 Femara (letrozole) Targeted Therapy 1/24/2019 Ibrance (palbociclib) Surgery 12/3/2019 Lumpectomy; Lumpectomy (Left) Surgery 12/3/2019 Lymph node removal Radiation Therapy 3/17/2020 Whole breast Dx IDC/DCIS, ER-/PR-, HER2-
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Jun 17, 2022 06:10PM gg27 wrote:

Susan, sorry to hear about progression, that is always so hard to hear & to try something new yet again.

Rosie, I have been the first one on a couple of trials & it's very scary, not sure I would do it again. I was first on the alpelisib and they wouldn't let me mitigate any of the SE's so I only lasted 10 days on it. If only they allowed what they allow now, I probably could have tolerated it longer, but I wish you all the best as the other 3 I've been on have been very good to me.

Yes, we still have our S2000, the weather has no been very condusive to getting out top down but fingers crossed, soon. Our travel luckily isn't all driving, 40 min drive, then sitting in a ferry line up, 2 hours on the ferry & then an hour or so driving. We stay with good friends overnight if we have to, but we have done there & back in a day, a long day but sleeping in your own bed is the best.

Savaloko, I can't say if it's worth changing treatments or not, but I wouldn't want to be rushed into changing unless we knew for sure that it was something. Could it wait til the next scan?

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; Mastectomy (Left); Mastectomy (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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Jun 17, 2022 06:57PM sadiesservant wrote:

gg27, interestingly, the Cancer Agency is no longer testing for PIK3CA as they found that Alpelisib didn’t live up to expectations so you may not have missed out on much. I recently had a biopsy and my MO is holding tissue in reserve as he indicated there was nothing targeted to look for at the moment. Remind me… what is timoverstib targeting? I’m looking ahead just in case Capecitabine fails (on it for the third time after back to back fails - TM looks optimistic but some liver pain - scan on Monday so will know then). List of options is very short here…

Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/11/2001 Lumpectomy; Lumpectomy (Right); Lymph node removal; Lymph node removal (Right): Sentinel, Underarm/Axillary Chemotherapy 6/7/2001 CEF Radiation Therapy 12/17/2001 Whole breast: Breast Hormonal Therapy 12/20/2001 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/2/2007 Femara (letrozole) Hormonal Therapy 10/22/2007 Arimidex (anastrozole) Dx 1/3/2017, IDC, Right, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Chemotherapy 1/27/2017 Taxol (paclitaxel) Hormonal Therapy 3/29/2017 Arimidex (anastrozole) Targeted Therapy 4/20/2017 Ibrance (palbociclib) Dx 10/12/2017, IDC, Right, Stage IV, metastasized to other Chemotherapy 10/21/2017 Xeloda (capecitabine) Radiation Therapy 11/15/2017 External Local Metastases 11/15/2017 Radiation therapy: Bone Hormonal Therapy 1/19/2018 Faslodex (fulvestrant) Radiation Therapy 8/2/2018 External Local Metastases 8/2/2018 Radiation therapy: Bone Radiation Therapy 11/5/2018 External Local Metastases 11/5/2018 Radiation therapy: Bone Targeted Therapy 10/10/2019 Verzenio Radiation Therapy 11/3/2020 External Local Metastases 11/3/2020 Radiation therapy: Bone Dx 1/22/2021, IDC, Right, 1cm, Stage IV, metastasized to liver, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2021 Xeloda (capecitabine) Chemotherapy 10/8/2021 Other Chemotherapy 1/7/2022 Other

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