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Topic: mets to lung

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: Jan 6, 2012 06:53PM - edited Oct 12, 2013 05:32PM by bhd1

bhd1 wrote:

hello. i got scan rusults yesterday. looks like abraxane is not working, since cancer is spreading. i am going on navelbine now. any words of encouragement? thanks. i am new to the boards, happy to find you all

barb

barb Dx 9/22/2011, IDC, 3cm, Stage IV, Grade 3, ER-/PR-, HER2+
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Oct 28, 2021 12:40PM - edited Oct 28, 2021 12:41PM by Sdak1403

Good morning!

I had a biopsy. The EBUS procedure was performed on me yesterday afternoon. Their impression was that the area and nodes were fine, despite the PET/CT showing a lot of hypermetabolism in that area.

The report then went on to read they biopsied #7 and # 11 as they were present for lymphocytic activity. Now we wait another week,

Meanwhile, DOC told my DH that "...all was free and clear!"

I am so confused!

OOPS--WILL POST TO FORUM,

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Nov 3, 2021 04:10AM Sdak1403 wrote:

I’m sorry, I’m visiting my family and missed your reply. I’m having surgery Friday so I’m gonna take your advice an just wait for the biopsy results. Zen out a little, lol!

Thanks:-)

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Nov 22, 2021 06:49AM SusaninSF wrote:

This thread hasn't been very active lately. I hope it's because everyone is doing well. I know a lot of us are on multiple threads for multiple mets.

I start my second cycle of Halaven on Tuesday. Crossing my fingers that Halaven is working since I've been feeling better since I've been on it. That being said, my cough is still pretty bad. I'm also hoping to get on the ARX-788 trial by the end of the year. There is a 28-day washout period so I hope to get the drug before the end of the year.

Would love to hear updates from other lung metsters.

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 22, 2021 03:37PM Bright55 wrote:

hi SusaninSF

Yes very quiet....I am still stable and doing well no lung issues yet no tiredness on the ribociclib faslodex combo since September last year .and four month scan due late Jan .

Australia has still not opened up to all interstate travel and no overseas yet.

Still wear masks for indoor shopping

First event for me will be early Decmeber with fashion and fundraIser for Afghanistan women in city of Sydney

The hotter days for beach swimming have not arrived . Two months of cooler weather is unusual for spring and now wet cool days. But cannot complain

Christmas will let be a busy time as city tourist will flock to the scenic coastal beaches whereI live

All the best with your new therapy

Bright in hope

Dx 2011, DCIS, Right, <1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+, HER2- Dx 2016, Right, 2cm, Stage IV, metastasized to lungs, ER+/PR+, HER2- Hormonal Therapy 7/9/2016 Femara (letrozole) Targeted Therapy 11/2/2019 Afinitor (everolimus) Hormonal Therapy 10/8/2020 Faslodex (fulvestrant) Targeted Therapy 10/8/2020 Kisqali Hormonal Therapy Liquid tamoxifen (Soltamox) Surgery Mastectomy: Right Hormonal Therapy Aromasin (exemestane)
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Nov 22, 2021 08:20PM moth wrote:

I scan again in December so we'll know more then. My lung met has been a constant pita. It was necrotic by the time I started treatment in Mar 2020 (it had outgrown its blood supply) but about 9 months later it was back. Same area. I did a big course of rads for it (couldn't get SBRT which would have been my first choice). Two bouts of radiation induced pneumonitis since and now that section is getting fibrotic, as expected.

I have a little cough constantly and never know now whether it's the fibrosis gunking things up & just an over senstive lung or a new met. There was a new spot near the same area that they were looking at in the summer & Sept scans but it seemed to be small and stable then & we're not even sure if it's a met or scar tissue.

If it's significantly grown on the Dec scan, that would probably mean a change in systemic treatment. I was told no more rads to that area & I don't think I can convince anyone to operate on it at this point.

Susan, hope the halaven is working on the mets & that you get into the trial drug soon!

Bright, glad you're doing well! We're still masking here. The big decision for us is what to do about christmas. Last year we just spent it with the people who live here...this year I think we will need to expand that a bit & meet with more family.

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 22, 2021 10:39PM Piksie wrote:

The previous concern about Pulmonary Lymphangitic Carcinomatisis has been confirmed. After two cycles of Xeloda, CA 153 continued to rise and my pulmonary symptoms continued to tank, so we made the assumption that I was not responding and moved to Halaven. Luckily, I had an immediate pulmonary response to Halaven and can breathe again.

The recent CT indicated a significant increase in osseous sclerotic lesions, "likely progression versus reaction to therapy." However, I feel 100% confident that my bone mets improved during Xeloda, because while I couldn't breathe, my bones were almost pain-free. Now that I'm no longer taking it, the pain is coming back. I also know that CA153 continued to rise because of my lungs, even though my bones improved. (Sorry if that's hard to follow.) I plead my case to MO that both were effective based on my symptoms, and luckily, he agreed to give it a go. So starting Nov 30, I will take BOTH Xeloda and Halaven. If I had let them make the call based solely on bloodwork and imaging, they might have scrapped both as ineffective and taken months/years from me.

So for this lung mets discussion, I'm doing very well. :) A Pulmonologist reviewed the Chest CT and wrote a prescription for Symbicort, but I don't feel like I need it right now. I'll keep it in my hip pocket.

I'm hosting 12 family members for Thanksgiving. The weather will be beautiful, so I'm setting up a table on the patio for whoever wants to get fresh air with me. Six of them are traveling via air, so we will keep our distance.

Susan, how are you doing with Halaven SEs? I'll crosspost some of this, so I'll also see you on the Halaven thread. :)

Dx 12/12/2015, DCIS, Left, 6cm+, Stage 0, Grade 3, 0/6 nodes, ER+/PR+, HER2- Dx 12/12/2015, IDC, Left, 6cm+, Stage IIB, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 1/27/2016 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Silicone implant Surgery 10/14/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx 7/17/2018, IDC, Left, <1cm, Stage IIB, Grade 2, 18/18 nodes, ER+/PR+, HER2- Hormonal Therapy 7/28/2018 Arimidex (anastrozole) Hormonal Therapy 7/29/2018 Zoladex (goserelin) Surgery 8/17/2018 Lymph node removal: Left; Reconstruction (left): Silicone implant Chemotherapy 9/12/2018 AC + T (Taxol) Dx 12/25/2018, DCIS/IDC, Stage IV, metastasized to bone, ER+/PR+, HER2- Radiation Therapy 1/28/2019 Whole-breast: Breast, Lymph nodes, Chest wall, Bone Targeted Therapy 3/26/2019 Ibrance (palbociclib) Dx 6/2021, IDC, Stage IV, metastasized to lungs Hormonal Therapy 6/14/2021 Faslodex (fulvestrant) Chemotherapy 9/24/2021 Xeloda (capecitabine) Chemotherapy 11/9/2021 Halaven (eribulin) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 22, 2021 10:43PM Sadiesservant wrote:

Hi All,

I watch this thread but it's always been on the quiet side since I joined in 2017. Despite what Dr. Google says, it seems like the lung issues are secondary for many of us. My pleural effusion in my right lung is still there but has been restricted to loculated pockets that have remained stable. I do have odd discomfort in my chest lately which makes me wonder if things are stirring (not feeling overly confident about the Vinorelbine) but won't know until my scan on December 17th. (Seriously irritated about the timing of that one! Just found out when it is scheduled, same day as chemo and at 6:00 PM on a Friday night... yeesh. I seem to have drawn the short straw in terms of timing of scans the last couple of years - lots late at night... )

Moth, I also have lots of fibrosis. I lost about 1/3 of my right lung volume, I assume from the constant fluid build up and then draining. I do think our lungs are more sensitive and susceptible once we have issues due to cancer which is why I have been anal about protecting myself through the pandemic. I took a trip to England in 2018 and ended up with pneumonia for the first time in my life. I don't recall ever being that sick and would rather not repeat that experience!

Cheers.

Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/10/2001 Lumpectomy: Right; 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 10/21/2007 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 3/28/2017 Arimidex (anastrozole) Targeted Therapy 4/19/2017 Ibrance (palbociclib) Dx 10/12/2017, IDC, Right, Stage IV, metastasized to other Chemotherapy 10/20/2017 Xeloda (capecitabine) Radiation Therapy 11/15/2017 External: Bone Hormonal Therapy 1/18/2018 Faslodex (fulvestrant) Radiation Therapy 8/2/2018 External: Bone Radiation Therapy 11/5/2018 External: Bone Targeted Therapy 10/9/2019 Verzenio Radiation Therapy 11/3/2020 External: 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 Navelbine (vinorelbine) Chemotherapy 1/6/2022 Halaven (eribulin)
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Nov 23, 2021 05:30AM SusaninSF wrote:

Piksie,

I don't have a single SE on Halaven and it seems to be working. My breathing is getting better though I am still coughing a lot. I will start my second cycle tomorrow. After that I will likely get on the ARX-788 trial. Now I'm wondering if I should stay on Halaven and delay the trial drug. At the same time, I don't want to risk losing my spot. The 28-day washout required for the trial really scares me. Also, I won't know if Halaven worked or not. Very difficult decision. I will see my MO tomorrow. She will likely have a persuasive argument for one or the other.

SadieServant,

I also have pockets of loculated fluid after my pleurodesis. Sorry about your bout with pneumonia. Have you had the pneumonia vaccine? I have had the first but not the second shot. Will do that in early December.

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 23, 2021 07:35AM - edited Nov 23, 2021 07:35AM by Sadiesservant

I hadn't even thought about the pneumonia vaccine Susan. I feel inoculated to death LOL with three Covid shots and the flu vaccine! Not sure how many wars my compromised immune system can wage over a few weeks…. 😊.

Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/10/2001 Lumpectomy: Right; 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 10/21/2007 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 3/28/2017 Arimidex (anastrozole) Targeted Therapy 4/19/2017 Ibrance (palbociclib) Dx 10/12/2017, IDC, Right, Stage IV, metastasized to other Chemotherapy 10/20/2017 Xeloda (capecitabine) Radiation Therapy 11/15/2017 External: Bone Hormonal Therapy 1/18/2018 Faslodex (fulvestrant) Radiation Therapy 8/2/2018 External: Bone Radiation Therapy 11/5/2018 External: Bone Targeted Therapy 10/9/2019 Verzenio Radiation Therapy 11/3/2020 External: 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 Navelbine (vinorelbine) Chemotherapy 1/6/2022 Halaven (eribulin)
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Nov 23, 2021 04:00PM Anotherone wrote:

I have switched from H&P to kadcyla and from that one to enhertu. First switch because of the little progression, second because we thought it would be better. Lungs are ok , no issues tt

Primary in 2006, metastasis 2019. Sorry can lot log in diagnosis and treatment info properly - it gets jumbled. On Kadcyla now as had progression on H&P Dx 10/10/2006, IDC, Left, Stage IIIC, metastasized to lungs, Grade 3, 4/9 nodes, ER-/PR-, HER2+ Dx 7/1/2019, IDC, Stage IV, metastasized to lungs Chemotherapy 9/16/2019 Abraxane (albumin-bound or nab-paclitaxel) Surgery Lymph node removal: Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Tissue expander placement Radiation Therapy External: Chest wall Targeted Therapy Herceptin (trastuzumab)
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Nov 23, 2021 05:36PM SusaninSF wrote:

Anotherone,

Let us know how you are doing on Enhertu. Theresa45 did well on it for about a year. Hope it works well for you too!

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 23, 2021 07:48PM - edited Nov 24, 2021 07:11PM by moth

Sadiesservant, I got my pneumonia vaccine in 2018 after completing Stage 1 cancer treatment. I had it as part of a whole bunch of vax that I did for entry to nursing school. I had the Pneumovax 23. It's free for >65 or immunocompromised. i did mine with Fraser public health If I didn't have I would have definitely wanted it once dx'd with a lung met. Also remember you tetanus needs boosting every 10 years (it comes bundled with dipththeria, pertussis & polio).

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 28, 2021 10:06PM ParakeetsRule wrote:

Hi! Just stopping in to say hello. I developed a pleural effusion around my left lung last month and testing found breast cancer cells in it. Great! The CT scan showed a nodule in the right lung and a suspicious spot on a vertebrae, plus some ambiguous cloudy junk in the left lung that could be radiation damage. (I also had a miserable allergic reaction to the contrast fluid so that made the sucky week of waiting for the results even more sucky) Now waiting for a PET scan on Friday to get the full picture and confirm, but my oncologist didn't seem to think it would be anything else.

After a few weeks of hoping and wishing it would be literally almost anything else, I'm not inclined to be hopeful anymore. Cancer sure does make you wish for weird things! My primary care doctor and I had a laugh about that later, when she said that after I showed up with breathing issues, she'd been hoping I had asthma. Me, too, doc. Me, too....

I do have one question for now! Does anyone have experience, thoughts, or advice about pleural effusions? Dr. Google was terrifying, and it was also a little terrifying how little information came up on this forum when I did a search, because I started thinking Google was right and people with effusions passed away quickly 😬. I had a thoracentesis on the 16th and they drained 1.5 liters of fluid. I can tell it's starting to come back but so far, as before, it's just a little annoying and not preventing me from doing anything. (except jumping up and down because I hate the sloshy feeling, and I'm not even going to try running right now, ha)

I know some people end up getting catheters and that starting cancer treatment can sometimes dry up the effusion. But do they ever stabilize on their own? Or fill slowly enough that you can do a repeat thoracentesis periodically? Can you fly with them or do the changes in air pressure mess with it?

I'm so anxious to start treatment (looks like it will be Ibrance) because the slowly growing effusion makes me feel like I'm actively dying because nothing is being done yet. The cancer is just hanging out in there somewhere, generating fluid. :(

Dx at 36 and again at 41. So dumb. Cancer is primarily in pleural cavity and nodes. Maybe in a lung and a bone. Dx 3/21/2017, IDC, Left, Grade 2, ER+/PR-, HER2- Chemotherapy 5/15/2017 AC + T (Taxol) Surgery 9/13/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Radiation Therapy 11/1/2017 External: Lymph nodes, Chest wall Hormonal Therapy 1/15/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 11/2021, Stage IV, metastasized to bone/lungs/other, ER+, HER2- Hormonal Therapy 12/8/2021 Zoladex (goserelin) Hormonal Therapy 12/8/2021 Faslodex (fulvestrant) Targeted Therapy 12/13/2021 Piqray (alpelisib)
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Nov 29, 2021 01:12AM - edited Nov 29, 2021 05:11AM by SusaninSF

Parakeets,

Sorry about your diagnosis but I'm glad you have found this forum.

I've dealt with pleural effusions for 2-3 years. Started off a small amount. Did thoracentesis. Grew to 2 liters. Had a Pleurx inserted and drained at home. The fluid did not go down so had a Pleurodesis procedure that successfully has kept me dry except for a few loculated pockets of fluid that I don't notice. After you have a pleurodesis procedure you can't fly for at least 8 weeks. Since then I try to avoid flying but haven't had any problems when I have. Honestly, I haven't even noticed the air pressure difference when I'm in the air. I do take an Ativan because I'm fearful of having a panic attack.

I'm certain you will feel much better once you start a treatment and Ibrance is a fantastic drug. We always say, "Don't ask Dr. Google". When I googled "breast cancer brain mets" when I was first diagnosed metastatic it said "11 months". I'm still alive more than 7.5 years later.

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 29, 2021 02:55AM Sadiesservant wrote:

Hi Parakeets,

Sorry you are finding yourself here. I can imagine how you must be feeling at your young age. I was originally diagnosed at 38 but then went almost 16 years until I was diagnosed as metastatic as a result of a malignant pleural effusion. I was also ready to buy my burial plot based on Dr. Google’s prognosis but he was wrong! My MO made it clear he expected me to do well for quite some time and now I am coming up to five years metastatic.

I had quite a bit of fluid by the time I was diagnosed and had a small thoracentesis at the time they took fluid for a biopsy. It didn’t last and, after a second thoracentesis we decided to have a PleurX Catheter inserted. That was the ticket to resolving the issue. Home care came twice a week for about five or six months to drain the lung until it suddenly dried up. I now have loculated fluid that remains but it doesn’t cause any issues. My lung is somewhat damaged from the fluid/draining so I am careful about exposure to respiratory illnesses but I flew to Britain less than a year after the catheter was removed.

The pleural effusion is something that can be dealt with and a good treatment will help to knock it back. Hopefully you will start Ibrance soon and see quick results but don’t hesitate to reach out if you have any questions.

Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/10/2001 Lumpectomy: Right; 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 10/21/2007 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 3/28/2017 Arimidex (anastrozole) Targeted Therapy 4/19/2017 Ibrance (palbociclib) Dx 10/12/2017, IDC, Right, Stage IV, metastasized to other Chemotherapy 10/20/2017 Xeloda (capecitabine) Radiation Therapy 11/15/2017 External: Bone Hormonal Therapy 1/18/2018 Faslodex (fulvestrant) Radiation Therapy 8/2/2018 External: Bone Radiation Therapy 11/5/2018 External: Bone Targeted Therapy 10/9/2019 Verzenio Radiation Therapy 11/3/2020 External: 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 Navelbine (vinorelbine) Chemotherapy 1/6/2022 Halaven (eribulin)
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Dec 1, 2021 08:48PM GR4C1E wrote:

Yikes. I was feeling sorry for myself a minute ago and then I read your posts, SusaninSF & ParakeetsRule. My pleural effusion produced a whopping 400 ccs of fluid during thoracentesis and, while the procedure is easy peasy, I cried like a baby for 4 days while my insides tried to fill up the 400 ccs of airspace left behind.

This year I've had some positive outcomes and some setbacks, then more positive, then more setbacks, so now I can feel it creeping up on me again, that sneaky pleural effusion. I've recently had my tumor markers fluctuate in the last three months and go up suddenly, then slowly go down a little, then creep back up significantly only to drop by half. In my brain, I'm imagining the mets during this time - growing and shrinking and growing and shrinking, and my pleural effusion going - ALLRIGHT! Now you've pissed me off!

I was told initially that it is loculated and could be completely asymtomatic, until it isn't, so I have a CT scheduled to check on the recent shenanigans, because I can defintely feel a disturbance it the force! My CRNP confirmed that my breathing is diminished on the right as compared to the left lung. Right now I just have some aching in my back, just below my right shoulder blade and shortness of breath during exertion. The good news being my tumor markers are the lowest they've been all year, so I'll suck it up. (or get it sucked out, as the case may be)

Liters? Really? I didn't even know that was possible.

Sadiesservant - Dr. Google must be stopped. I've had a few nighmares because of his misdiagnoses! I'm so lucky to have an awesome MO. He knows when I start a question with: "I'm not a doctor, but I play one on the internet, and I was wondering..........." he's going to have to talk me through whatever internet rabbit hole I just spiralled into!

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 10/24/2011 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left); Reconstruction (right) Chemotherapy 11/22/2011 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 9/15/2021 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 10/6/2021 Taxotere (docetaxel) Dx 12/13/2021, IDC, Right, Stage IV, metastasized to bone, ER-/PR-, HER2-
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Dec 1, 2021 09:45PM Sadiesservant wrote:

Thanks for the laugh GR4C1E. Yes... it can be liters of fluid. At one point I had more than 3 liters drained off of my right lung. That get's painful when it gets close to being empty. Ouch! I remember that well. Home care used to pull just under a liter off every 3-4 days. My body LOVES to make fluid!

Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/10/2001 Lumpectomy: Right; 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 10/21/2007 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 3/28/2017 Arimidex (anastrozole) Targeted Therapy 4/19/2017 Ibrance (palbociclib) Dx 10/12/2017, IDC, Right, Stage IV, metastasized to other Chemotherapy 10/20/2017 Xeloda (capecitabine) Radiation Therapy 11/15/2017 External: Bone Hormonal Therapy 1/18/2018 Faslodex (fulvestrant) Radiation Therapy 8/2/2018 External: Bone Radiation Therapy 11/5/2018 External: Bone Targeted Therapy 10/9/2019 Verzenio Radiation Therapy 11/3/2020 External: 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 Navelbine (vinorelbine) Chemotherapy 1/6/2022 Halaven (eribulin)
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Dec 1, 2021 10:03PM GR4C1E wrote:

Yeah, I'm going to put that on my resume':

Super powers to include, but not limited to, creating abnormal cells and making fluid.

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 10/24/2011 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left); Reconstruction (right) Chemotherapy 11/22/2011 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 9/15/2021 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 10/6/2021 Taxotere (docetaxel) Dx 12/13/2021, IDC, Right, Stage IV, metastasized to bone, ER-/PR-, HER2-
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Dec 1, 2021 10:14PM ParakeetsRule wrote:

SusaninSF, thank you! That is all helpful to know. My effusion seems to be pretty slow growing so that's good. It's been just over two weeks and it wasn't until today that it started feeling a little tight in there again. I'm going to have to reach out the pulmonologist soon to figure out what to do. The thoracentesis wasn't too bad but I don't know if it's something I can do repeatedly. I'm guessing not. What's the Pleurx like? In my head I'm imagining the drain tubes from after the mastectomy and I remember how much they suuuuuuuuucked.

Sadiesservant, Sadly we do not have home care here in the good old USA. At least not as a standard or routine thing. You either have to enlist family or hire a service. That's one reason I want to avoid a drainage tube! I live alone so I would either have to get a relative to come help drain it or go back to the hospital. (neither of which is terribly difficult if I'm able to to go this long in between drains, but still!) As for this diagnosis at my age, I think other people are more disturbed than me. I would obviously prefer to live to 100 like I planned (ha) but I don't have kids and I've been lucky enough to do about 5 people's worth of bucket list items already.

GR4C1E, your post made me laugh so hard. Nobody was more shocked than me. "What do you mean you pulled out a party-sized soda bottle's worth of fluid?! FROM WHERE?!" Hahaha. I'm 5'2" if you round up and weigh about 118 if I eat a lot of snacks. WHERE WAS ALL THIS FLUID?!

Shocked

Dx at 36 and again at 41. So dumb. Cancer is primarily in pleural cavity and nodes. Maybe in a lung and a bone. Dx 3/21/2017, IDC, Left, Grade 2, ER+/PR-, HER2- Chemotherapy 5/15/2017 AC + T (Taxol) Surgery 9/13/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Radiation Therapy 11/1/2017 External: Lymph nodes, Chest wall Hormonal Therapy 1/15/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 11/2021, Stage IV, metastasized to bone/lungs/other, ER+, HER2- Hormonal Therapy 12/8/2021 Zoladex (goserelin) Hormonal Therapy 12/8/2021 Faslodex (fulvestrant) Targeted Therapy 12/13/2021 Piqray (alpelisib)
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Dec 1, 2021 10:58PM Sadiesservant wrote:

Parakeets, I understand that many people drain the PleurX themselves so home care is not necessarily a requirement. That's just how they do things here. And the drain wasn't too bad (had to laugh at it suuuucking... they kind of all do... ha!). Showering was a bit of a pain as I needed to put a Mepore cover over it but I never had an infection.

Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/10/2001 Lumpectomy: Right; 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 10/21/2007 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 3/28/2017 Arimidex (anastrozole) Targeted Therapy 4/19/2017 Ibrance (palbociclib) Dx 10/12/2017, IDC, Right, Stage IV, metastasized to other Chemotherapy 10/20/2017 Xeloda (capecitabine) Radiation Therapy 11/15/2017 External: Bone Hormonal Therapy 1/18/2018 Faslodex (fulvestrant) Radiation Therapy 8/2/2018 External: Bone Radiation Therapy 11/5/2018 External: Bone Targeted Therapy 10/9/2019 Verzenio Radiation Therapy 11/3/2020 External: 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 Navelbine (vinorelbine) Chemotherapy 1/6/2022 Halaven (eribulin)
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Dec 1, 2021 11:06PM SusaninSF wrote:

Parakeets,

Doing the drainage yourself isn't difficult. The part that I needed help with was putting on the dressing since my drain was on the side of my chest. It can be done if you keep a mirror nearby but will probably take some practice. The Pleurx was uncomfortable at first but I quickly got used to it. I was draining about 300cc.s every day so that was pretty inconvenient. I even had to travel while draining. A box of 10 of those drainage bottles cost my insurance company $3,400! So happy my Pleurodesis procedure was successful and I'm now healed up with no drain. I'm grateful that there was something I could do even if it wasn't easy.

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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Dec 1, 2021 11:32PM Chicagoan wrote:

Parakeets-I had home nursing visits approved by my insurance company for the drainage. I did that for about a month but found it inconvenient b/c I would only find out the night before when the nurse was coming. I had to persuade my pulmonologist that I was capable of doing the drainage myself by demonstrating it in his office. Once you get the hang of it, it isn't hard. The drain does not protrude much and is covered by a waterproof bandage so it's not that inconvenient. I couldn't swim or take deep baths but that was it. I was allowed to fly if I wanted but didn't feel like dragging all my equipment with me.

I imagine your pulmonologist will advise you on whether to get a pleurex catheter or whether you can get by with occasional thorocentesis procedures. I think it all depends on the volume of the fluid and how quickly it builds up.

Dx 9/21/2016, IDC, Left, Stage IV, metastasized to bone, Grade 1, ER+/PR+, HER2- Radiation Therapy 9/26/2016 Hormonal Therapy 10/5/2016 Femara (letrozole) Targeted Therapy 10/26/2016 Ibrance (palbociclib)
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Dec 5, 2021 07:07AM rachel5738 wrote:

Hi all - it’s been a quiet few weeks for me which I’ll take as a good sign. I see my Docs again in early Jan to check on tumour in left lung bi had wedge resection earlier this year in right lung. Healed well bit also had small pleural effusion. We will see what 2022 brings. Everything was stable at last scans so I’ll take that into the new year. 

April 2021; Stage 4, lung Mets; Wedge resection. One tumour idea tied as neuroendocrine. August 2020;Breast Cancer Stage II, Grade 1: Treatment Plan: FEC-T X6/Rads 25+5/Tamoxifen 5 years; Cervical Cancer Stage 1B, Treatment plan: Rad Hyst. Dx 7/5/2010, IDC, 1cm, Stage II, Grade 1, 1/7 nodes, ER+/PR+, HER2- Dx 4/28/2021, Right, Stage IV, metastasized to lungs
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Dec 5, 2021 10:28PM - edited Dec 5, 2021 10:31PM by ParakeetsRule

Well, enough fluid has built up again that the pulmonologist said it's better to go ahead and put in a Pleurx. Boo! So that's scheduled for Wednesday after my first Zometa infusion. I went about two weeks before the effusion built up enough to be annoying again, so at least I won't have to deal with it too often.

I thought I was starting treatment last week (Zometa and Faslodex) but when I got there they said whoever told me to come in shouldn't have. Great!! And I had no idea Zometa was an infusion, I thought they said it was a shot! And my oncologist was out on emergency leave and couldn't clear up all the confusion. Hopefully next week we'll be back on track, because the PET scan and brain MRI results will be in and hopefully so will my oncologist....

Are there any exercise restrictions with a Pleurx?

Dx at 36 and again at 41. So dumb. Cancer is primarily in pleural cavity and nodes. Maybe in a lung and a bone. Dx 3/21/2017, IDC, Left, Grade 2, ER+/PR-, HER2- Chemotherapy 5/15/2017 AC + T (Taxol) Surgery 9/13/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Radiation Therapy 11/1/2017 External: Lymph nodes, Chest wall Hormonal Therapy 1/15/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 11/2021, Stage IV, metastasized to bone/lungs/other, ER+, HER2- Hormonal Therapy 12/8/2021 Zoladex (goserelin) Hormonal Therapy 12/8/2021 Faslodex (fulvestrant) Targeted Therapy 12/13/2021 Piqray (alpelisib)
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Dec 6, 2021 02:54AM Sadiesservant wrote:

Parakeets, I had no restrictions with the PleurX beyond no bathing. However, you will be sore for a few days and should wait until things heal before doing anything strenuous. It does sound like you won’t need to be drained too often. My lung filled up within days to the point that I could barely make it to the end of my driveway without gasping for breath.

Sorry about the confusion. Hopefully you will be back on track soon

Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/10/2001 Lumpectomy: Right; 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 10/21/2007 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 3/28/2017 Arimidex (anastrozole) Targeted Therapy 4/19/2017 Ibrance (palbociclib) Dx 10/12/2017, IDC, Right, Stage IV, metastasized to other Chemotherapy 10/20/2017 Xeloda (capecitabine) Radiation Therapy 11/15/2017 External: Bone Hormonal Therapy 1/18/2018 Faslodex (fulvestrant) Radiation Therapy 8/2/2018 External: Bone Radiation Therapy 11/5/2018 External: Bone Targeted Therapy 10/9/2019 Verzenio Radiation Therapy 11/3/2020 External: 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 Navelbine (vinorelbine) Chemotherapy 1/6/2022 Halaven (eribulin)
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Dec 6, 2021 07:32AM SusaninSF wrote:

Parakeets,

I agree with Sadieservant that you should take it easy the first few days and no swimming or bathing while it is in. I did daily yoga and twice-weekly dance class with the Pleurx.

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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Dec 6, 2021 12:25PM Karenfizedbo15 wrote:

Hi All, just to jump in on the Zometa chat. I was also scheduled for this but, since I have no other infusions and am trying to avoid the ‘chemo ward’ for as long as possible ( although I’m on Capecitabine), I made a bit of a fuss about it. They switched me to Denosumab which does the same job but is a sub cutaneous jab and has less side effects than Zometa…..it’s also at least twice as expensive. I’m about to ask them if I can do this myself at home instead of waiting up to a couple of hours in hospital!

I’ve been on that for about 8 months and my MO says it can be indefinite as long as working. My dentist is very up on all of this and is confident we can deal with any dental issues.

Never heard of a PleurX ….but having had 2 large pleural effusions and a pleurodesis in Jan, will be keeping an eye on that!

Surgery 9/6/2007 Lymph node removal: Underarm/Axillary; Mastectomy: Right; Reconstruction (right): Latissimus dorsi flap Dx 4/2018, IDC, Right, Stage IV, metastasized to lungs, 1/17 nodes, ER+/PR+, HER2- Dx 2021, Stage IV, metastasized to bone Chemotherapy 2/3/2021 Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole)
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Dec 6, 2021 06:45PM moth wrote:

Karen, I'm on denosumab and I made arrangements to do it at home but they normally don't because it doesn't come.in a prefilled syringe. It's a vial and you need a blunt needle to draw it up, then switch to the injection needle. Because I went to nursing school and my dd is an RN they let me do my own. I have a reel about it on my Instagram where I filmed her prep it and give it to me. I've done it myself too ..

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 7, 2021 10:26PM ParakeetsRule wrote:

More lung fluid thoughts and questions! :) I have a drain installation scheduled for tomorrow but I'm thinking about cancelling it. I watched the videos they told me to watch to prepare, and it was all talk about "going home for one last time" and "getting you back to doing the things you love" and other similar ominous sentiments. But that doesn't apply to me at all. My effusion is nowhere near bad enough to make the idea of getting a drain seem like a relief. It just seems horrible and having it will make me feel horrible. And I currently feel pretty good considering the overall situation so why mess that up?

I've now gone three weeks since it was drained and there hasn't been anything I can't do. Feeling it slosh if I bend over is annoying and some activities are a little more challenging, like going up multiple flights of stairs, and talking on the phone while walking my dog up a slope (ha) but that's pretty much it. And I actually feel a lot better this week than I did last week when I talked to the pulmonologist. I'm getting Zometa and seeing my oncologist before the drain procedure, so I'm going to ask what she thinks because she was out on emergency leave when I went back to the pulmonary office last week. Fingers crossed I can also start Ibrance and Faslodex tomorrow. I've never been so excited for medicine before!!!!! :D

Do effusions grow and shrink on their own without treatment? Is that why I'm feeling better this week? Or are my heart/lungs adjusting to the reduced lung size? Is long term damage an issue if my lung doesn't get enough space for a long time? Can your pleural cavity pop a leak if it gets too full? (I would have asked the doctor when he called today but that was before I watched the videos and spiraled downward)

Am I being totally irrational for wanting to cancel this?

Dx at 36 and again at 41. So dumb. Cancer is primarily in pleural cavity and nodes. Maybe in a lung and a bone. Dx 3/21/2017, IDC, Left, Grade 2, ER+/PR-, HER2- Chemotherapy 5/15/2017 AC + T (Taxol) Surgery 9/13/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Radiation Therapy 11/1/2017 External: Lymph nodes, Chest wall Hormonal Therapy 1/15/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 11/2021, Stage IV, metastasized to bone/lungs/other, ER+, HER2- Hormonal Therapy 12/8/2021 Zoladex (goserelin) Hormonal Therapy 12/8/2021 Faslodex (fulvestrant) Targeted Therapy 12/13/2021 Piqray (alpelisib)
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Dec 7, 2021 11:02PM Sadiesservant wrote:

Parakeets, I'm not sure what the video showed that has you rattled. As I indicated, I had the PleurX catheter when I was first diagnosed, from January 2017 to about July 2017. I'm now coming up to five years metastatic. The surgeon did indicate that they typically see people who are end stage with this issue but he noted that clearly wasn't the case with me. I had no discomfort at all from the catheter and it was hugely beneficial in allowing me to live normally but then, I had a lot of fluid making it hard to function at its worst. There are several others on this site who also had a PleurX many years ago and are continuing to do well.

There are no black and white answers to your questions as cancer can do funny things and is very individual. However, typically the fluid will continue to accumulate in the absence of treatment, making breathing more difficult. It's unlikely to decrease without an effective therapy and/or drainage. Yes, the long term accumulation of fluid can damage the lung(s). I have a permanently reduced lung volume in my right lung which shows up on the CT as a result of the effusion (about 2/3 functional). It doesn't bother me but I wouldn't want to lose any additional capacity there.

In your case it may not be critical for you to have this procedure as it sounds like your fluid accumulation so far has been relatively minor. However, I would encourage you to discuss it with your MO before canceling. It's also important to understand that Ibrance will take about three months before you see results. Hormone based treatments are very effective but slower.

Good luck with your decision.

Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/10/2001 Lumpectomy: Right; 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 10/21/2007 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 3/28/2017 Arimidex (anastrozole) Targeted Therapy 4/19/2017 Ibrance (palbociclib) Dx 10/12/2017, IDC, Right, Stage IV, metastasized to other Chemotherapy 10/20/2017 Xeloda (capecitabine) Radiation Therapy 11/15/2017 External: Bone Hormonal Therapy 1/18/2018 Faslodex (fulvestrant) Radiation Therapy 8/2/2018 External: Bone Radiation Therapy 11/5/2018 External: Bone Targeted Therapy 10/9/2019 Verzenio Radiation Therapy 11/3/2020 External: 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 Navelbine (vinorelbine) Chemotherapy 1/6/2022 Halaven (eribulin)

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