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Topic: Triple Negative Stage IV

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: Feb 1, 2013 03:56AM

Renae64 wrote:

This is a way for us to find each other, please add your post so everyone can be found. We can discuss on this thread (hope this works out!)

Dx 4/3/2012, IDC, 3cm, Stage IV, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 4/23/2012 Lumpectomy: Right
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Oct 12, 2020 03:58PM deanders wrote:

Does the Trodelvey (sp?) cause your hair to fall out? It says it's a possible side effect but say if the percent of people effected by that.



Dx 7/2/2019, IDC, Right, 5cm, Stage IIIA, Grade 3, 1/20 nodes, ER+/PR-, HER2- (IHC) Chemotherapy 7/25/2019 AC + T (Taxol) Surgery 2/4/2020 Dx 8/2020, IDC, <1cm, Stage IV, metastasized to lungs, Grade 3, 1/21 nodes, ER-/PR-, HER2- (IHC) Surgery Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy Xeloda (capecitabine)
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Oct 13, 2020 06:36PM Momchichi wrote:

Hi Deanders,

I’ve been on trodelvy since June and my hair fell out shortly after 1st cycle, eyebrows & eyelashes too. My other side effects are fatigue, diarrhea & mouth sores. My Mets have all responded well to this new drug. There is a wonderful Facebook group for people on trodelvy that is very active.

https://www.facebook.com/groups/548907892701469/?ref=share

Dx at 38, TN in breast, HER2 + in some nodes. TN met to L2 at 40. Dr thinks I was never HER2+ & it was a false + from neoadjuvant chemo - whaaat??? Dx 7/19/2017, DCIS/IDC, Right, 4cm, Stage IIIC, Grade 3, 16/19 nodes, ER-/PR-, HER2+ (FISH) Chemotherapy 8/10/2017 AC Chemotherapy 9/28/2017 Taxol (paclitaxel) Surgery 1/18/2018 Lumpectomy: Right; Lymph node removal: Underarm/Axillary Targeted Therapy 2/16/2018 Perjeta (pertuzumab) Targeted Therapy 2/16/2018 Herceptin (trastuzumab) Chemotherapy 2/16/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 6/24/2018 Whole-breast: Breast, Lymph nodes, Chest wall Dx 6/19/2019, Stage IV, metastasized to bone, Grade 3, ER-/PR-, HER2- (IHC) Radiation Therapy 8/12/2019 External: Bone Chemotherapy 9/4/2019 Xeloda (capecitabine) Dx 11/22/2019, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 12/6/2019 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 1/7/2020 Abraxane (albumin-bound or nab-paclitaxel) Immunotherapy 1/10/2020 Tecentriq (atezolizumab) Targeted Therapy Trodelvy (sacituzumab govitecan-hziy)
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Oct 28, 2020 02:15PM fcb222 wrote:

moth, how is the tecentriq working for you? where you PD-LI positive?

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Oct 28, 2020 02:19PM fcb222 wrote:

Has anyone with an activating PIK3CA mutation tried Copanlisib (trade name Aliqopa)? How about a VEGF inhibitor for TNMBC? Interested to hear of anyone's experience with either drug. I'm looking at two different trials...one with copanlisib and Opdivo and the other with a VEGF called fruquintinib.

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Oct 28, 2020 03:12PM moth wrote:

Hi fcb222, yes I'm PD-L1 positive. Tecentriq was working super well till now. I'm starting cycle 9 tomorrow. I have both lung & liver mets. Originally my lung met, while large, was considered necrotic and it was just slowly shrivelling up. My liver mets responded well. But on latest scan lung met has come back to life and grown again. So not sure what is happening there & why. Right now I'm staying on treatment but might have changes to treatment &/or rads in the future.

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 13, 2020 04:16PM moth wrote:

https://www.fda.gov/drugs/drug-approvals-and-datab...

Effective Nov 13 FDA grants accelerated approval to pembrolizumab for locally recurrent unresectable or metastatic triple negative breast cancer

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 25, 2020 11:12AM S3K5 wrote:

Moth, have you changed your treatment or are you still on Tecentriq/Abraxane? It is so disappointing to hear about progression but I guess that has been part of our journey. Hopefully your MO will switch you to other options that will work. Last week my NP who works closely with my MO, read out a list of future options for me, even though I have gone through 11 lines of treatments so far. That was encouraging.

I will be starting Tecentriq/Abraxane next week. I am planning to ice my scalp, feet and hands. Hopefully this will help retain some of my hair and ward off neuropathy. Has anyone tried scalp cooling with this combo?

Is there a thread for Tecentriq/Araxane ? A search didn't come up with anything. I am really nervous about the SEs.

S3K5 Dx 3/24/2008, IDC, Right, 3cm, Stage IIIA, Grade 2, 5/10 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 4/15/2008 AC + T (Taxol) Targeted Therapy 5/30/2013 Ibrance (palbociclib) Chemotherapy 2/1/2019 Xeloda (capecitabine) Chemotherapy 4/5/2019 Taxol (paclitaxel) Chemotherapy 10/30/2019 CMF Targeted Therapy 7/7/2020 Piqray (alpelisib) Dx 10/19/2020, IDC, Right, Stage IV, metastasized to bone/liver, ER-/PR-, HER2- (IHC) Chemotherapy 12/10/2020 Doxil (doxorubicin) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Chemotherapy Gemzar (gemcitabine)
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Nov 25, 2020 11:20AM moth wrote:

I was on Tecentriq + Taxol, supposed to be switching to Tecentriq + Abraxane tomorrow. There is a thread for it here - not hugely active but if you ask questions I'm sure we'll all chime in. https://community.breastcancer.org/forum/162/topic...

I'm getting localized treatment to the re-awakened lung met but staying on this until liver mets stop responding.

Can you share your list? Is it different than my list? It's on p. 93 I think.... For me it's not that long. If you stop responding to taxanes, that takes off 3. If you stop responding to platins, that removes 2. Gemzar is usually given with a platin so it's really 1 tx not 3. For immunotherapy, in Canada we essentially have nothing. I was getting tecentriq through a clinical trial and then when it got shut down, had to fight tooth & nail to get it privately from the manufacturer. I would be surprised if Keytruda made it through approval here anytime soon, never mind Trodelvy. I think I will run out road before these become avail :(

CHEMO

Taxol (paclitaxel)

Abraxane (nab-paclitaxel)

Gemzar (gemcitabine)

cisplatin

carboplatin

Xeloda (capecitabine)

Taxotere (docetaxel)

Halaven (erubilin)

Navelbine (vinorelbine)

Ixempra (ixabepilone)

IMMUNOTHERAPY

Tecentriq (atezolizumab)

Keytruda (pembrolizumab)* see post immed below for reference to study

Trodelvy (chemical name: sacituzumab govitecan-hziy)

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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Dec 3, 2020 03:38PM - edited Jan 11, 2021 12:01PM by Moderators

This Post was deleted by Moderators.
To send a Private Message to the Mods: community.breastcancer.org/mem...
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Dec 3, 2020 03:40PM Moderators wrote:

Posting here too: Check out our new content on recently-approved Keytruda (chemical name: pembrolizumab). Keytruda is used in combination with chemotherapy to treat unresectable locally advanced or metastatic triple-negative, PD-L1-positive breast cancer.

Read all about Keytruda.


To send a Private Message to the Mods: community.breastcancer.org/mem...
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Dec 4, 2020 11:17AM S3K5 wrote:

moth , I am going to start Doxorubicin Liposomal (Doxil®) from next week, which belongs to an anthracycline-type drug. I didn't see this on your list. My MO said that even if I have failed a single chemo drug, sometimes the same drug will actually work when given in combination with another chemo drug (I think she was giving me some hope!)

According to the list you have above, I am running out of options - I have only two more regimens to try: Halaven and immunotherapy with off-label chemo combination since I have already progressed on Gemzar and Taxanes, Tecentriq with Abraxane is ruled out since I had progressed on Taxol.

S3K5 Dx 3/24/2008, IDC, Right, 3cm, Stage IIIA, Grade 2, 5/10 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 4/15/2008 AC + T (Taxol) Targeted Therapy 5/30/2013 Ibrance (palbociclib) Chemotherapy 2/1/2019 Xeloda (capecitabine) Chemotherapy 4/5/2019 Taxol (paclitaxel) Chemotherapy 10/30/2019 CMF Targeted Therapy 7/7/2020 Piqray (alpelisib) Dx 10/19/2020, IDC, Right, Stage IV, metastasized to bone/liver, ER-/PR-, HER2- (IHC) Chemotherapy 12/10/2020 Doxil (doxorubicin) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Chemotherapy Gemzar (gemcitabine)
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Dec 4, 2020 11:27AM moth wrote:

s3k5, I will.add it to the list when I'm on the laptop (on phone now) . I wonder if doxil is to adriamycin what abraxane is to taxol - same drug, slight change in delivery packet?

I don't see why you couldn't try tecentriq + abraxane. It's the immunotherapy doing the heavy lifting in that combo, the chemo is backup. Do you know if you're PD-L1 positive? If yes, it's more likely to work


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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Dec 4, 2020 01:19PM S3K5 wrote:

You are right - Doxil is a slightly different formulation of Adriamycin.

"Doxil is a new preparation of doxorubicin, liposomal doxorubicin. In an appropriate dose, it is supposedly equivalent to Adriamycin in effectiveness, but delivers much less toxicity to the normal tissues of the rest of the body".

Yes, I am PDL-1 positive, so immunotherapy is on the list but not with Abraxane. Since Keytruda is approved with a few other combinations of chemo drugs, my MO wants to use something that I didn't have before. Right now, I am hoping Doxil does something to keep the liver mets stable or shrink.

S3K5 Dx 3/24/2008, IDC, Right, 3cm, Stage IIIA, Grade 2, 5/10 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 4/15/2008 AC + T (Taxol) Targeted Therapy 5/30/2013 Ibrance (palbociclib) Chemotherapy 2/1/2019 Xeloda (capecitabine) Chemotherapy 4/5/2019 Taxol (paclitaxel) Chemotherapy 10/30/2019 CMF Targeted Therapy 7/7/2020 Piqray (alpelisib) Dx 10/19/2020, IDC, Right, Stage IV, metastasized to bone/liver, ER-/PR-, HER2- (IHC) Chemotherapy 12/10/2020 Doxil (doxorubicin) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Chemotherapy Gemzar (gemcitabine)
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Dec 19, 2020 08:39AM phet7178 wrote:

Hello all - I am a formerly ER+ primary tumour person recently diagnosed with suspected TNBC mets (so mutated on progression). I seem to remember seeing someone post about how ER+ cancer that has become ER- has specific treatment options - perhaps that immunotherapy is particularly recommended for that? Does anyone know about this or have a link? Many thanks!

Dx 3/7/2019, IDC, Left, 4cm, Stage IIA, Grade 3, ER+/PR+, HER2- Chemotherapy 3/22/2019 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Dx 11/24/2020, IDC, Stage IV, metastasized to brain/lungs, Grade 3, 0/3 nodes, ER-/PR-, HER2- Chemotherapy 1/19/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine)
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Dec 19, 2020 05:33PM Buddhahead wrote:

I"m so sorry I'm just now seeing this. I didn't get notified someone replied to me! Anyway, Keytruda worked for a while, but I've recently had progression and will begin Abraxane and Carboplatin soon. Waiting for insurance approval.


How are you doing?

Chemotherapy 2/17/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 5/29/2012 Lymph node removal: Right; Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 7/25/2012 Breast, Lymph nodes Surgery 3/5/2013 Reconstruction (left); Reconstruction (right)
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Dec 23, 2020 01:21PM phet7178 wrote:

Hi all - my TNBC status seems to have been all but confirmed. I have mets in mediastinal nodes and two nodules on lungs. I am keen to start on a clinical trial, with the hope of getting access to the newest drugs and 'saving' others for when needed. My original tumour was ER+/PR+ 8/8. Is anyone on a tiral now they could recommend? I'm in the UK but if the trial is not available here can also go to Italy (where my husband is from) or Australia (where I am from) for a trial. So hoping with that triangulation most 'types' of drugs might become options....

Dx 3/7/2019, IDC, Left, 4cm, Stage IIA, Grade 3, ER+/PR+, HER2- Chemotherapy 3/22/2019 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Dx 11/24/2020, IDC, Stage IV, metastasized to brain/lungs, Grade 3, 0/3 nodes, ER-/PR-, HER2- Chemotherapy 1/19/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine)
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Jan 12, 2021 08:32AM - edited Jan 15, 2021 11:29AM by ucfknights

This Post was deleted by ucfknights.
Dx 1/23/2019, DCIS/IDC, Left, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- Surgery 2/4/2019 Lumpectomy: Left; Lymph node removal Dx 2/28/2019, IDC, Left, <1cm, Stage IA, Grade 2, ER+/PR-, HER2- Chemotherapy 3/11/2019 AC + T (Taxol) Surgery 8/19/2019 Prophylactic mastectomy: Right
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Jan 15, 2021 11:29AM ucfknights wrote:

hi, ladies!
how did you know you had or suspected mets? feeling vulnerable amd sad

Dx 1/23/2019, DCIS/IDC, Left, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- Surgery 2/4/2019 Lumpectomy: Left; Lymph node removal Dx 2/28/2019, IDC, Left, <1cm, Stage IA, Grade 2, ER+/PR-, HER2- Chemotherapy 3/11/2019 AC + T (Taxol) Surgery 8/19/2019 Prophylactic mastectomy: Right
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Jan 15, 2021 12:20PM moth wrote:

ucfknights, deep breaths! I'll answer you in the not dx with stage 4 but have questions thread

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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Feb 15, 2021 08:03AM GR4C1E wrote:

I need to know what questions to ask. I met with my MO last week and I'm still a little bit stumped/floored/confused about our conversation. He basically said that he received my foundation testing results. The last time I was/still am TNBC. There was a HER2+ marker identified this time but unfortunately there was no "expression" so it didn't change anything. Then he stated that I do not qualify for immunotherapy and we're going to stick with Abraxane as long I can tolerate the treatment. I'm new to the mets game here and I have no idea what that means, if anything. I feel like he told me I don't have any other options. My head is still spinning.

12/30/2021 - Xgeva for bone mets Dx 9/2/2011, IDC, Left, 2cm, Stage IA, Grade 3, 0/2 nodes, ER-/PR-, HER2- Surgery 10/25/2011 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left); Reconstruction (right) Chemotherapy 11/23/2011 AC + T (Taxotere) Dx 1/4/2021, IDC, Right, Stage IV, metastasized to lungs, ER-/PR-, HER2- Chemotherapy 1/20/2021 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 7/20/2021 Gemzar (gemcitabine) Chemotherapy 9/16/2021 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 10/7/2021 Taxotere (docetaxel) Dx 12/13/2021, IDC, Right, Stage IV, metastasized to bone, ER-/PR-, HER2-
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Feb 15, 2021 09:06AM JCSLibrarian wrote:

GR4C1E - I started with chemo for my MBC in December 2018. I was on Abraxane with no immunotherapy as my PDL1 gene was less than 1% out of whack. The cancer had metastasized to my lungs. There were several ‘sparkles’, but only one tumor large enough to biopsy. I see you have already had mastectomies so a lumpectomy is no use. I also had SBRT (Stereotactic Body Radiation)to my lung. These two localized treatments have kept me cancer free since almost the beginning. I have not had any chemo since January 2020. My MO won’t say NED, but he is willing to let me go without treatment until when/if a scan sees something else. I know we are not exactly the same, but Abraxane was very doable. I do have some neuropathy in my feet that can be bothersome. I will take that for the cancer to disappear! Good luck and let us here how treatment goes.

Dx 11/5/2018, IDC, Left, 4cm, Stage IV, metastasized to lungs, Grade 2, ER-/PR-, HER2- Chemotherapy 12/20/2018 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 3/22/2019 Surgery 7/16/2019 Lumpectomy: Left Radiation Therapy 8/12/2019 External
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Feb 15, 2021 11:23AM GR4C1E wrote:

Thank you, JCSLibrarian. I've read a lot about SBRT here. I think I need to learn more about it and ask my MO if it is something to keep in my arsenal. Right now the Abraxane is helping. I have three large nodules in my right lung and a pleural effusion so breathing up to now was rough and I had a chronic cough which has since gone away completely. The largest nodule (there are three) is fairly large so the thoracic surgeon was able to get a good sample. I'm not certain, but I feel like the pleural effusion sort of comes and goes. I have really good days and tiny set-backs that make me think it's fluid building up again and then it seems to resolve itself a few days later. My last visit my breathing had improved significantly and my MO said he could hear breath sounds in my lower right where he couldn't before because of the masses and the fluid so I'm definitely heading in the right direction.

I agree that Abraxane is doable. I'm not really having any difficult side effects. I have treatment on Thursdays and I usually start to feel fatigued every Friday at 10 am on the dot! So pretty manageable. I treat it with a big bowl of macaroni and cheese and a nap. Works every time!

12/30/2021 - Xgeva for bone mets Dx 9/2/2011, IDC, Left, 2cm, Stage IA, Grade 3, 0/2 nodes, ER-/PR-, HER2- Surgery 10/25/2011 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left); Reconstruction (right) Chemotherapy 11/23/2011 AC + T (Taxotere) Dx 1/4/2021, IDC, Right, Stage IV, metastasized to lungs, ER-/PR-, HER2- Chemotherapy 1/20/2021 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 7/20/2021 Gemzar (gemcitabine) Chemotherapy 9/16/2021 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 10/7/2021 Taxotere (docetaxel) Dx 12/13/2021, IDC, Right, Stage IV, metastasized to bone, ER-/PR-, HER2-
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Feb 15, 2021 02:08PM moth wrote:

first line treatment for mTNBC is atezolizumab + abraxane according to the latest guidelines . I don't understand why your MO would say you don't qualify for it. I can probably find you the guidelines if you want a screenshot to take to him.

For immunotherapy such as atezolizumab, it works best if your tumor expressed PD-L1. Have you had that testing? It's a specific test, separate from Foundation One. Even if your PD-L1 is low or negative, the immunotherapy is still recommended for mTNBC

Also, do you have copies of your Foundation One report? I just got my copy recently and I don't have much that's actionable there either. But you should get a copy so that you know what is there & keep an eye on any clinical trials that might be avail for your mutation.

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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Feb 15, 2021 03:30PM GR4C1E wrote:

OMG, moth!!!!!!!!!!! I just read your post and got pinged from my PC doctors website. They just uploaded another report from the biopsy: "PD-L1 22C3 FDA (Keytruda) for TNBC combined positive score." So yes, it appears I've had that testing!

12/30/2021 - Xgeva for bone mets Dx 9/2/2011, IDC, Left, 2cm, Stage IA, Grade 3, 0/2 nodes, ER-/PR-, HER2- Surgery 10/25/2011 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left); Reconstruction (right) Chemotherapy 11/23/2011 AC + T (Taxotere) Dx 1/4/2021, IDC, Right, Stage IV, metastasized to lungs, ER-/PR-, HER2- Chemotherapy 1/20/2021 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 7/20/2021 Gemzar (gemcitabine) Chemotherapy 9/16/2021 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 10/7/2021 Taxotere (docetaxel) Dx 12/13/2021, IDC, Right, Stage IV, metastasized to bone, ER-/PR-, HER2-
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Feb 15, 2021 03:42PM moth wrote:

awesome! then you definitely should be getting immunotherapy. Tecentriq (atezolizumab) was approved a while ago, Keytruda just in Fall 2020. Hope your MO follows up and either gets you started on immunotherapy or gives you a rationale for holding off....

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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Feb 16, 2021 02:50PM GR4C1E wrote:

Okay, just got off the phone with my MO. He did request the PD-L1 but the combined positive score was less than 1% so he doesn't believe there is any benefit to adding Keytruda to my chemo regimen. So that explains why he said no immunotherapy, just Abraxane for now. Pretty much the same result that JCSLibrarian had. We're the "less than 1%, girls!"


12/30/2021 - Xgeva for bone mets Dx 9/2/2011, IDC, Left, 2cm, Stage IA, Grade 3, 0/2 nodes, ER-/PR-, HER2- Surgery 10/25/2011 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left); Reconstruction (right) Chemotherapy 11/23/2011 AC + T (Taxotere) Dx 1/4/2021, IDC, Right, Stage IV, metastasized to lungs, ER-/PR-, HER2- Chemotherapy 1/20/2021 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 7/20/2021 Gemzar (gemcitabine) Chemotherapy 9/16/2021 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 10/7/2021 Taxotere (docetaxel) Dx 12/13/2021, IDC, Right, Stage IV, metastasized to bone, ER-/PR-, HER2-
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Feb 16, 2021 04:16PM Lucyred wrote:

just received the pathology report that TNBC has spread to my lung. Meet with the MO Friday to go over the plan for treatment. Anything I should ask or discuss? I am only 2.5 years out since last treatment and just in shock

Dx 12/15/2017, IDC, Right, 4cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Chemotherapy 1/14/2018 AC + T (Taxol) Surgery 7/12/2018 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 9/1/2018 Xeloda (capecitabine) Radiation Therapy 10/30/2018 Whole-breast: Breast Surgery 6/13/2019 Reconstruction (left): Tissue expander placement Surgery 9/26/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 12/9/2019 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Feb 16, 2021 04:53PM moth wrote:

alas, it's pretty common presentation for tnbc. I recurred at just past 2 yrs.

Key things to ask is: any other signs of mets? (have you have a bone scan, head + chest/abdo CT or MRI?)

PD-L1 testing. Critica to know this info as over 1% positive means you can try immunotherapy (atezolizumab aka Tecentriq) + chemo

Any chance of local treatment - ie radiation to the area? Depends on how diffuse or concentrated the lesions are. I had a lung met radiated in December 2020.

Did you have genetic testing at your inital dx? If not, do it now to see about BRCA etc because BRCA positive gets PARP inhibitors

I'll post more if I think of something else


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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Feb 17, 2021 11:53AM Elligtr wrote:

Hi, I'm also MTNBC and doing Abraxane, that's great you tolerable Abraxane so well for good period of time and able to get off now! I'm currently on this chemo but the neuropathy numbness and waking up at night sometimes can be difficult and am only 4 months taking it. I'm doing some PT now and going to try some supplements.

Question on the radiation to the lung--was this something the MO suggested or the RO? I think for now they want to see if Abraxane will make it go away, but it sounded like you felt that was an integral part of the treatment. I also have pleural effusion that has been drained but seems to accumulate still--does radiation work on that or is that solely chemo or continuous drainage?



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Feb 17, 2021 12:52PM moth wrote:

Elligtr -

just fyi, I'm also on immunotherapy since last March. Hard to know whether the chemo or the immunotherapy are providing the benefit.

I was just posting on twitter to my cancer friends there that I managed to beat back neuropathy. I had a dose reduction on both Taxol but when we switched to Abraxane I had full dose for first treatment and ended up with Grade 2 neuropathy. I've had a dose reduction since and my neuropathy has retreated to stage 0-1! I do use icing very thoroughly during treatments (I wonder whether my first full dose abraxane I was too sloppy with the icing). I also do aerobic exercise and massage to increase blood flow to all affected areas so the areas are getting nutrition (except during the actual infusion plus 5 min prior/after). B6 100 mg daily. Nerves do regrow but very slowly... I had Grade 2 neuropathy in my toes, fingers and around my mouth/chin. Felt like I had dentist freezing wearing off. It's almost all gone - just a bit of numbness on a few fingers and toes. (L-glutamine is the other supplement that some drs say is ok & mine did approve it but it can do weird things to liver values and because I have liver mets, we weren't sure what was causing what. So I dropped that. I used it in 2018 when doing 12 taxols though)

For my lung radiation - when I was first diagnosed in Feb 2020, I had a very very large lung met, taking up almost the entire central lobe in my R lung. BUT when we tried to biopsy it, the whole thing was necrotic. It was a fast growing tumor that was stupid enough to outgrow its blood supply. So we just watched it and concentrated on getting my liver under control. Then in November, suddenly the lung met 'woke' up, and again started growing quickly amidst the scar tissue. I was referred to an RO to see if we could treat it as an oligoprogression & that's when I had my rads.

I'm not sure about the pleural effusion but I know that there are several people on this board who had bad pleural effusion which stopped when the cancer became under control. So have hope that this is the case for you and it will stop soon!


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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