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Topic: FES PET scan for lobular

Forum: Stage IV/Metastatic Breast Cancer, Open to All To Contribute —

Topics here are started by members with a Stage IV/Metastatic Breast Cancer diagnosis, but open to all members to contribute to discussions. Please note that there is a separate forum, Stage IV/Metastatic Breast Cancer ONLY, where topics are open only to those members.

Posted on: Jun 16, 2021 10:58AM

KBL wrote:

Hello, everyone! I wanted to come and make a separate post about my experience.

I applied to be in a clinical trial for the new FES PET scan for lobular. As a lot of people know, my disease is extremely hard to see on imaging, and I’m really hoping this works for me. I am at the clinical trial now and have finished up the testing.

Day 1 was an optional FDG PET scan that I said yes to so they can see that it doesn’t show anything with that tracer.

Day 2 was the FES tracer.

Now I wait to see how that went. I am hoping beyond hope that this tracer is the answer for me so we can monitor my disease properly.

It’s just hell not knowing if I’m progressing or not.

The FES isn’t widely available, which is why I chose a trial. If it does help me, I will find where it is available and ask to be monitored that way.

I will come back once I learn how my body did with this new tracer. I can use all good thoughts that it will finally give me the peace of knowing imaging can work for me.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/19/2021 Faslodex (fulvestrant) Chemotherapy 9/26/2021 Xeloda (capecitabine)
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Posts 31 - 54 (54 total)

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Jun 30, 2021 03:55PM SF-Cakes wrote:

I missed this thread somehow until today, thank you so much KBL for starting this, and for going to participate in the clinical trial. I'd vaguely heard something about the FES PET, somewhere, something I'd read. I'm really sorry it can't show everything, like liver, small bowel, etc because if we can't see it, how in the heck do we know if treatment is working?! But seriously thanks for all the information.

Dx 6/2020, ILC, Left, 6cm+, Stage IIB, Grade 3, 2/4 nodes, ER+/PR-, HER2- Surgery 7/1/2020 Mastectomy: Left Chemotherapy 8/4/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 11/3/2020 Chest wall Dx 1/2021, ILC, Left, Stage IV, metastasized to bone, ER+/PR-, HER2- Radiation Therapy 2/10/2021 External: Bone Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Jun 30, 2021 04:09PM KBL wrote:

SF-Cakes, thank you. I hope others can have this test and post their results as well. It was great to know it saw the cancer in my stomach. It’s the only thing besides biopsy that shows it

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/19/2021 Faslodex (fulvestrant) Chemotherapy 9/26/2021 Xeloda (capecitabine)
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Aug 17, 2021 03:24PM NinaCA wrote:

Hi KBL- It's nice having this thread just for FES, I get lost talking about it on other threads.

Where did you have your FES Clinical Trial? I'm in the process of sending my medical records to the Hoag Cancer Center in Irvine California where they are having FES trials. Hopefully it will let me know what is happening to my ILC mets. Previous PET scan shows nothing one month ago, but CA15-3 marker getting close to 1000. Previous mets found in ileal and and rectal wall in May 2020 resolved with Xeloda. I don't know if the CT scan would show anything different than a PET. I can have either before I do the FES (they need a comparison scan for mets). they also said they would have to a biopsy a week later, if possible, if something is found. I live in the San Francisco Area and would like to not have to travel for this. Anyone know of a closer place? Are you sure it doesn't show bowel or small intestine or just not as reliable? For all I know I could have it in my stomach now.

SF Cakes- What are you taking for the stomach mets?

Dx 2/1998, IDC, Left, 5cm, Stage IIIA, ER+/PR+, HER2- Dx 1/2003, Stage IV, metastasized to liver, ER+/PR+, HER2- Dx 7/2015, Stage IV, metastasized to liver, ER+/PR+, HER2- (FISH) Dx 1/2020, ILC/IDC, Stage IV, metastasized to liver/other, ER+, HER2- (FISH) Surgery Chemotherapy Xeloda (capecitabine) Surgery Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib)
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Aug 17, 2021 04:46PM KBL wrote:

Hi, NinaCA. It would be great if you can have it done. I actually flew quite a distance to Utah, Huntsman Cancer Institute. The radiologist there told me they have stopped recruiting and are getting ready to present the findings.

The radiologist is the one who told me it didn’t show the liver or biliary area. Have you had a colonoscopy? I also had a small bowel endoscopy where you swallow a camera. That could be an option.

I did an FDG PET and FES PET one day apart so they could compare.

I’m sorry your tumor markers are up so much. Please come back and post if you do it so we can see how yours went. I had to have a biopsy proven sample sent before I went so they knew they were looking at ILC.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/19/2021 Faslodex (fulvestrant) Chemotherapy 9/26/2021 Xeloda (capecitabine)
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Aug 17, 2021 04:52PM ShetlandPony wrote:

Has anyone ever seen a simple list of which ILC mets locations are usually well-visualized on FES PET and which are not? How about which sites are often better-visualized on FES PET vs. FDG PET vs MRI vs CT vs Ultrasound vs Endoscopy vs Colonoscopy? In other words, a guide to say if you suspect mets in x location, try this mode. Or if you can't find the ILC mets, what are your best bet scan modalities.

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Lumpectomy
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Aug 17, 2021 05:05PM - edited Aug 17, 2021 05:07PM by ShetlandPony

Nina, I just did a search for you on clinicaltrials.gov with the term FES and location California. I only saw Hoag in Irvine and City of Hope in Duarte.

The Hoag trial Brief Summary:

The standard of care imaging of breast cancer metastases recommended by the National Comprehensive Cancer Network (NCCN), CT of the chest/abdomen/pelvis and bone scan, may be suboptimal. 18F-fluoroestradiol (FES) is a novel PET tracer designed to detect estrogen receptors, which are often expressed in breast cancers. FES PET/CT may provide improved evaluation of metastases in patients with ER-positive breast cancer.

The COH trial Brief Summary:

This phase II trial studies F-18 16 alpha-fluoroestradiol (FES) positron emission tomography (PET)/computed tomography (CT) in predicting response to endocrine therapy in patients with newly diagnosed breast cancer that has spread to other parts of the body. FES is a radioactive form of the hormone estrogen and may "light up" where cancer is in the body. Diagnostic procedures using FES, such as FES PET/CT, may help measure the FES and help doctors predict how well the cancer will respond to treatment.

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Lumpectomy
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Aug 17, 2021 05:20PM - edited Aug 17, 2021 05:23PM by KBL

Hi, Shetland. Sadly, I'm sure it's different for everyone, but I can tell you which work for me and which don't.

CT scans are totally useless, they've never shown one bit of cancer. I look like two totally different patients when it comes to that and spine MRI.

MRI has been the only thing that saw my bone and bone marrow mets throughout my body but does not show the mets in my stomach on abdominal MRI.

Endoscopy was the only thing that caught my stomach, until the FES PET now sees them.

FES PET also caught two micro metastases in lymph nodes under my right arm. I never even knew about those.

Bone scan doesn't show a thing.

FDG PET, nope, nothing.

Breast mammogram, ultrasound, MRI, and even the FES PET showed nothing in my breasts.

Small bowel showed nothing, but to be fair, I don't think it's in my colon or small bowel.

Am having a CT scan on. August 30. Feel it's a waste but have to keep doing them just to be sure nothing shows up. I have two bumps under my clavicle and above my breast that have popped up. Doc told me to point them out to tech. Who knows what they are


De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/19/2021 Faslodex (fulvestrant) Chemotherapy 9/26/2021 Xeloda (capecitabine)
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Aug 17, 2021 05:44PM ShetlandPony wrote:

Thank you, KBL. I will note this for future reference. Are the clavicle bumps on the same side (right) as the axillary lymph node micrometastases?

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Lumpectomy
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Aug 17, 2021 05:51PM KBL wrote:

Yes, only they’re below the clavicle, on what I think is still considered rib? I don’t know what those chest bones are called. It’s actually the bone right under my clavicle and then the second one down is one or two bones down.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/19/2021 Faslodex (fulvestrant) Chemotherapy 9/26/2021 Xeloda (capecitabine)
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Sep 2, 2021 11:28AM - edited Sep 2, 2021 11:29AM by KBL

Update. I had a CT scan. They said the bumps under my clavicle are not showing as anything, but that doesn't surprise me since it doesn't usually show anything.

The other thing it said is I have mild gastric wall thickening. I didn't realize when I went to the emergency room in April, it said the same thing.

My GI thinks it might be progression. Have any of you had wall thickening? If so, what did it turn out to be?

I have appointment with MO on September 13.

NinaCA, keep us posted on the trial. I know it takes a little while to get everything situated.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/19/2021 Faslodex (fulvestrant) Chemotherapy 9/26/2021 Xeloda (capecitabine)
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Sep 2, 2021 03:22PM NinaCA wrote:

KBL- Thickening of the wall in the small intestine was bad enough that they went in for exploratory surgery and took out a piece of ilium being squeezed by an ILC tumor. They were able to see fluid backed up in the small intestine with not much in the colon on a PET. Are your thickening walls in your stomach? Is your GI a GI surgeon?

I just posted on Lobular Sucks- Hi- Tumor Markers now over 1000 and continue to get higher every three weeks-no physical symptoms. Sad

I talked to the office where FES PET clinical trials are being done in southern California and they are ready for me with 2 days notice to give me one, after I talk with the Doc. tomorrow. I will schedule a regular PET here in two weeks and then go down south the next week for a follow up FES PET. Two months ago NEAD on my PET- only laugh was they again thought I had a hysterectomy (2nd time they wrote that). Doesn't give me much confidence in their scan reading ability. Just cut and paste from a previous wrong report that was corrected. Good to know KBL that they were able to find ILC in your stomach with the FES. I guess if they find something they will immediately take me off of Xeloda and put me on Taxol (had it 22 years ago but can have it again). I feel like stopping Xeloda right now and changing meds even if they don't know why.

Dx 2/1998, IDC, Left, 5cm, Stage IIIA, ER+/PR+, HER2- Dx 1/2003, Stage IV, metastasized to liver, ER+/PR+, HER2- Dx 7/2015, Stage IV, metastasized to liver, ER+/PR+, HER2- (FISH) Dx 1/2020, ILC/IDC, Stage IV, metastasized to liver/other, ER+, HER2- (FISH) Surgery Chemotherapy Xeloda (capecitabine) Surgery Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib)
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Sep 2, 2021 04:58PM - edited Sep 2, 2021 04:59PM by KBL

Hi, NinaCA. I had answered you back in the other thread. Sorry about that. It's in my stomach. I'm not quite sure if my GI is a surgeon. That's bad I don't know. He does endoscopies and colonoscopies. I guess I should know that. The thickening says it's in my stomach on the small curve. That's where my mets have been, in my stomach, but it's never shown on a CT. That's why I'm concerned.

They did the FDG PET one day and FES PET the next in my clinical trial. I wish they could do that for you. Such a pain to have to go two different times. I hope they can find why your numbers keep climbing. I really am curious to see how your FES goes. I'm so glad you're going to get to do it. It would be great to figure out what's going on with your markers without having to have more surgery.

If I switch meds this time, I'll be going on Xeloda. I’m in that same position of having to decide to switch even though we don’t have definite proof it’s progressing. So frustrating.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/19/2021 Faslodex (fulvestrant) Chemotherapy 9/26/2021 Xeloda (capecitabine)
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Sep 3, 2021 12:08AM NinaCA wrote:

KBL- My regular GI doc was useless. At least yours was willing to do a biopsy with endoscopy. It was the the surgeon who looked at the CT and said I needed surgery. Don't know if a PET would have picked it up since I didn't have them then. How did they see the thickening in your stomach? on a CT scan? Since the CT shows thickening of walls, I don't know if a PET could pick up the same information. I'll ask the FES doctor tomorrow when he calls.

Dx 2/1998, IDC, Left, 5cm, Stage IIIA, ER+/PR+, HER2- Dx 1/2003, Stage IV, metastasized to liver, ER+/PR+, HER2- Dx 7/2015, Stage IV, metastasized to liver, ER+/PR+, HER2- (FISH) Dx 1/2020, ILC/IDC, Stage IV, metastasized to liver/other, ER+, HER2- (FISH) Surgery Chemotherapy Xeloda (capecitabine) Surgery Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib)
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Sep 3, 2021 04:24AM KBL wrote:

NinaCA, doctors can be so frustrating. I’m sorry you didn’t have a good one. I thank mine all the time because of what he found.

Up until now, CTs have been useless. This is the first one that’s said they see something. They usually say no evidence of disease when I’m full of disease. There was no information other than the radiologist could see patchy spots in my stomach on the FES. He also found two micro mets under my right arm that I never knew about. Still couldn’t see anything in my breasts.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/19/2021 Faslodex (fulvestrant) Chemotherapy 9/26/2021 Xeloda (capecitabine)
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Sep 11, 2021 12:33PM NinaCA wrote:

I have an appointment for Sept. 17 for FES PET with Dr. Ulaner. They are also going to try and get my insurance to cover a contrast CT at the same time even though I just had a FDG PET on Thursday (it was clear, again)- markers over 1000. Again, for the third time the written PET report had me "post hysterectomy". Seems you are not allowed to change a report, only amend it and no one looks at the amendment. I'm Nervous about what they will find next week, and then back for a biopsy if they find something. Just gave my dog a abdominal scan, she's beginning to fail, of old age. We are both on shaky ground.

Dx 2/1998, IDC, Left, 5cm, Stage IIIA, ER+/PR+, HER2- Dx 1/2003, Stage IV, metastasized to liver, ER+/PR+, HER2- Dx 7/2015, Stage IV, metastasized to liver, ER+/PR+, HER2- (FISH) Dx 1/2020, ILC/IDC, Stage IV, metastasized to liver/other, ER+, HER2- (FISH) Surgery Chemotherapy Xeloda (capecitabine) Surgery Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib)
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Sep 11, 2021 02:29PM KBL wrote:

NinaCA, I will be thinking of you. I would like to hear what the report says. During mine, the radiologist said it doesn’t show liver or omentum well because of too much uptake. I’d like to know what Dr. Ulaner says. Boy, that’s awesome you get to have it with him.

I’m so sorry about your pup. It’s so sad when they get sick. Hugs

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/19/2021 Faslodex (fulvestrant) Chemotherapy 9/26/2021 Xeloda (capecitabine)
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Sep 11, 2021 05:11PM NinaCA wrote:

I have an appointment for Sept. 17 for FES PET with Dr. Ulaner. They are also going to try and get my insurance to cover a contrast CT at the same time even though I just had a FDG PET on Thursday (it was clear, again)- with markers over 1000. Again, for the third time the written PET report had me "post hysterectomy". Seems you are not allowed to change a report, only amend it and no one looks at the amendment. I'm Nervous about what they will find next week, and then back for a biopsy if they find something. Just gave my dog a abdominal scan, she's beginning to fail, of old age. We are both on shaky ground.

Dx 2/1998, IDC, Left, 5cm, Stage IIIA, ER+/PR+, HER2- Dx 1/2003, Stage IV, metastasized to liver, ER+/PR+, HER2- Dx 7/2015, Stage IV, metastasized to liver, ER+/PR+, HER2- (FISH) Dx 1/2020, ILC/IDC, Stage IV, metastasized to liver/other, ER+, HER2- (FISH) Surgery Chemotherapy Xeloda (capecitabine) Surgery Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib)
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Sep 23, 2021 11:41AM KBL wrote:

NinaCA, how did your scan go?

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/19/2021 Faslodex (fulvestrant) Chemotherapy 9/26/2021 Xeloda (capecitabine)
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Sep 24, 2021 11:39PM NinaCA wrote:

KBL-Thanks for asking. Mixed reviewS. The CD I brought of my recent PET was crap. No information on the disc! The good news was that he didn’t see any malignancies on the FES but He did see 2 things on the CT that he needed to compare with a previous CT to see if they were new - one was fluid in the pelvic area. the doctor was great but FES wasn’t for me. I’ve tried to order another disc but Kaiser does not make it easy.
I spoke to my MO and he had a bit of an attitude- I think it was end of the day irritability. He said only two reasons my markers are high (they just went up another 300 in 3 weeks). 1. I have cancer that is not showing up, more cancer cells or. 2. The existing cancer cells are shedding more antigens. If the scans don’t show anything just wait until I have symptoms.

Dx 2/1998, IDC, Left, 5cm, Stage IIIA, ER+/PR+, HER2- Dx 1/2003, Stage IV, metastasized to liver, ER+/PR+, HER2- Dx 7/2015, Stage IV, metastasized to liver, ER+/PR+, HER2- (FISH) Dx 1/2020, ILC/IDC, Stage IV, metastasized to liver/other, ER+, HER2- (FISH) Surgery Chemotherapy Xeloda (capecitabine) Surgery Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib)
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Sep 25, 2021 04:37AM - edited Sep 25, 2021 04:41AM by KBL

I'm sorry you didn't find any answers. That can be frustrating. I am switching meds. My tumor markers are going up just slightly, but I am having symptoms and nothing shows. I hope they can figure out why your markers are going up so much. I’m also sorry your MO had attitude.

Please keep me posted on the other two things that need comparison.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/19/2021 Faslodex (fulvestrant) Chemotherapy 9/26/2021 Xeloda (capecitabine)
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Sep 25, 2021 09:28AM NinaCA wrote:

KBL I decided to look at my MO's phone conversation as it is his problem, although I feel a bit bullied. It's not been our usual interactions so I'm gonna cut him some slack, for now. What medications are you going on? I'm on Xeloda now 16 months and continuing until something shows up,-is that your next drug? I called my FES doc and they said they are still following up with trying to receive records. Sigh.

Dx 2/1998, IDC, Left, 5cm, Stage IIIA, ER+/PR+, HER2- Dx 1/2003, Stage IV, metastasized to liver, ER+/PR+, HER2- Dx 7/2015, Stage IV, metastasized to liver, ER+/PR+, HER2- (FISH) Dx 1/2020, ILC/IDC, Stage IV, metastasized to liver/other, ER+, HER2- (FISH) Surgery Chemotherapy Xeloda (capecitabine) Surgery Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib)
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Sep 25, 2021 09:46AM KBL wrote:

It stinks when they act out of character. Hopefully it was just a bad day.

Yes, I’m starting Xeloda on Monday. I started Faslodex shots last Monday. I got two years and two months out of Ibrance and Letrozole. I’m hoping for at least the same or better and that my stomach issues go away again.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/19/2021 Faslodex (fulvestrant) Chemotherapy 9/26/2021 Xeloda (capecitabine)
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Sep 25, 2021 10:10PM - edited Sep 25, 2021 10:17PM by ShetlandPony

Yes, KBL, hopefully your new drugs will put you back to eating normally and giving you a good long time of nothing going on.

Nina, reading that nothing showed on your FES PET made me think of some clinical trials like this one:

ClinicalTrials.gov Identifier: NCT00602043

"This phase II trial is studying how well F-18 16 alpha-fluoroestradiol (FES) imaging works in predicting response to first-line hormone therapy in women with hormone receptor-positive metastatic breast cancer. Diagnostic procedures, such as FES imaging, may help predict how well patients will respond to hormone therapy and may help plan the best treatment."

I believe this is the theory they are testing: If this patient's cancer does not show on FES PET, it might not be estrogen-driven (even if ER+ on pathology), so hormonal therapy might not work. So I'm thinking maybe the results you got may provide some useful input for the discussion about what treatment to use next. You might mention that trial to your onc.

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Lumpectomy
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Sep 26, 2021 04:43AM KBL wrote:

Hmm, great info, ShetlandPony. Mine still showed in all the places I have it, so I’m assuming my first line hasn’t really worked. I read all the stories of people getting scans after treatment and how much their cancer has shrunk or is not visible. Nope, not mine. Hence, why I am switching, even though doc thinks I’m stable. I don’t believe thatbecause of the new finding of gastric wall thickening. I hope I’m right and I see some lessening of my lesions on the next lumbar MRI.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/19/2021 Faslodex (fulvestrant) Chemotherapy 9/26/2021 Xeloda (capecitabine)

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