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Topic: De Novo Stage IV

Forum: Stage IV/Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Jul 5, 2020 12:40PM - edited Jul 5, 2020 12:42PM by KBL

KBL wrote:

I'm wondering if there is a topic just for de novo Stage IV. I'd like to know how people found out. Did you have symptoms that led you to the doctor for an answer? Was it found out of the blue when you had another issue and how was it found? Are there others like me who have never shown it in your breast but only where it is during Stage IV? Where is yours located?

I'll go first. Mine was found only through endoscopy and biopsy because I had early satiety and weight loss. No other test, including imaging, has shown the cancer, even in my stomach, where it is.

I know I've had trouble finding people here who have it in their stomach, but I'm still interested to know how many of us were de novo at the start.

If there is already a thread about this, please point me in the right direction, and I'll delete this post.

Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Targeted Therapy 6/23/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole)
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Aug 1, 2020 12:16AM I-beat-it wrote:

SondraF, retraction is greater compared with what it was, a bit of pain sometimes comes and goes. I should have a serious talk with the MO, I can’t sit and wait until they decide, if they do ever. my next appointment is in 2 weeks, and of course mri and bone scan that should be done before seeing him. Regarding second opinion, I had a long discussion with my insurance company today, need a lot of effort and follow up in hope that they approve, and funny the insurance only accepts hospitals under its network! but thanks for information.

Hejnet, get well soon, send you positive energy.

Have a nice weekend everyone!

De Novo Dx 9/2019, IDC, Left, 4cm, Stage IV, metastasized to bone/other, Grade 2, ER+/PR+, HER2- (IHC) Hormonal Therapy Zoladex (goserelin) Hormonal Therapy Femara (letrozole) Radiation Therapy External: Bone Targeted Therapy Ibrance (palbociclib)
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Aug 1, 2020 02:45AM SondraF wrote:

Olma- is it lymphoma rash you meant (mycosis fungoides)? Yeah - mine looks nothing like that, just scaly and white patches and maybe a little itchy. But its almost completely gone now. When it appeared it was deep winter and I was doing long hours at work, so I assumed it was from rubbing against the arm rest or desk or dry environments or something.

Julia - dealing with health systems is so frustrating isn't it. I swear its like the more I go to doctors the less faith I have in their judgement as its always such a rush. No wonder people spend time Dr Googling!

Dx 9/27/2019, IDC, Right, 5cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Targeted Therapy 11/29/2019 Ibrance (palbociclib) Hormonal Therapy 11/29/2019 Femara (letrozole), Zoladex (goserelin)
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Aug 3, 2020 11:51AM I-beat-it wrote:

regarding our discussion about possible surgery for de novo s. I requested the tumor board to review chest scans, which show significant retraction, and asked if primary tumor removal could be of help. Funny but I’m not surprised my single-minded MO replied on behalf of other “random people who occasionally take a quick look (do they really?! I am not sure about this part!) at my chart” , he said Surgery is Off the table, because it requires a massive resection and then several weeks of radiation sessions (I think ibrance should stop during radiation therapy), he added at the end no promises for future recurrence. massive resection means mastectomy, he used this phrase to scare me?? he wants to change systemic treatment, suggested to wait until next scans!!!! Next scans? Means wait 3 months? oh dear lord help me.... this term is familiar, I heard from him time to time “wait for next scans”.... I am confused. I prefer to stay in first line of treatment, especially when I learned from illiMae.
But considering situations and slow response of current treatment I’d like to evaluate other options as well, like surgery, so reto hear what BS has to offer. it was somehow my reply to MO, I hope it was not rude.

I am thinking it is better to give up searching, reading reports, even searching for second opinion. Just close my eyes and accept whatever MO and the team say, like nodding doll.

De Novo Dx 9/2019, IDC, Left, 4cm, Stage IV, metastasized to bone/other, Grade 2, ER+/PR+, HER2- (IHC) Hormonal Therapy Zoladex (goserelin) Hormonal Therapy Femara (letrozole) Radiation Therapy External: Bone Targeted Therapy Ibrance (palbociclib)
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Aug 3, 2020 01:12PM - edited Aug 3, 2020 01:20PM by Rosie24

I beat it,

I'm sorry you're having such frustration with your treatment. I'm one who had lumpectomy and radiation after my MBC diagnosis. I think I squeaked by with the help of some aggressive thinking docs and an MO who didn't really advocate for surgery but sent me for consults when I asked about surgery (as directed by a radiologist reading my mammogram. I think she may have overstepped.). There is recent evidence that surgery doesn't add to overall survival and it's not standard of care. The breast surgeon I saw was optimistic that surgery would be worthwhile for me because she considered me oligometastatic, meaning fewer than five mets and in only one or two sites. I also had shrinkage of the breast tumor and liver tumors due to I/L. The BS had to “fight" for my lumpectomy with the tumor board but somehow they went along with her. I had follow up radiation also. I have no idea if this will benefit me in the long run.

For MBC I think the focus is on quality of life and achieving stability if possible. I'm not sure what you mean by “retraction" but if your tumors are getting smaller your MO may think things are going well and there's no need for anything to change. Good luck with the second opinion. There's also a thread on surgery for stage 4. You'll see posts about the studies showing it's not shown to make a difference along with other posts. I'll try to link it here.


Dx 1/23/2019, DCIS/IDC, Left, 3cm, Stage IV, metastasized to liver, Grade 2, ER+/PR-, HER2- (FISH) Hormonal Therapy 1/24/2019 Femara (letrozole) Targeted Therapy 1/24/2019 Ibrance (palbociclib) Surgery 12/3/2019 Lumpectomy: Left Surgery 12/3/2019 Lymph node removal: Sentinel Radiation Therapy Whole-breast
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Aug 3, 2020 03:39PM - edited Aug 3, 2020 04:54PM by Olma61

I beat it - As far as I know, mastectomy vs lumpectomy depends on how widespread within your breast the cancer originally was. Some people are not candidates for lumpectomy even in earlier stages.


Sondra, yes that's the rash I was trying to think of the name of

10/30/2017 Xgeva for bone mets 5/31/2018 Taxol finished! "If one just keeps on walking, everything will be all right” - Kierkegaard Dx 8/3/2017, IDC, Right, 2cm, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 10/28/2017 Perjeta (pertuzumab) Targeted Therapy 10/28/2017 Herceptin (trastuzumab) Chemotherapy 10/30/2017 Taxol (paclitaxel) Hormonal Therapy 5/14/2018 Arimidex (anastrozole) Radiation Therapy 5/30/2019 External: Bone
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Aug 3, 2020 04:06PM illimae wrote:

I beat it, I’m sorry your MO wasn’t more helpful but in reading your post, I have questions, which may or may not help.

Surgery is not necessarily typical for Stage IV patients but is acceptable in certain situations like being oligometastatic (having 1-4 lesions to a single organ or bones). Not all MO’s support this and of the two biggest studies to see if removing the original tumor extends survival, both were flawed. In my case, I had a single met to my hip bone, my MO and BS were 50/50 on it, so it was entirely my choice, I chose surgery. I don’t know it it helped but I remained stable until recently with minor regrowth of the original bone lesion. I also have brain mets but my MO believes the were there before surgery, just too small to see.

Why did your MO mention changing treatment, is your cancer not responding or getting worst on ibrance? Either of those would be a reason to consider moving on but if not, changing seems rushed possibly.

Please never just nod and agree, do your own research too. No docs want to be questioned with random internet articles , so I recommend adding NIH (national institute of heath) to your searches for scholarly results. I had a talk with my MO early on where I agreed to trust her experience providing she hears me out when I have legitimate questions and makes time to fully explain her position.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Targeted Therapy 1/1/2017 Perjeta (pertuzumab) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/19/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 3, 2020 04:09PM Tinkerbell107 wrote:

Re the surgery and radiation: In my opinion There are pros and cons for the same plus the research goes back and forth re who benefits and who doesn’t based on their sample size from the trial.

I had a lumpectomy, with the idea being stage 2. So my 2 cents is more about radiation after surgery for de novo. When I was trying to wrap my head @ the difference of opinions I re read this below article several times. In the end with help from others on this site and going with my gut was the deciding factor for me. In the end who knows if the radiation helped but I’m at peace with my decision.

https://www.ascopost.com/issues/november-25-2019/when-to-consider-local-therapy-for-stage-iv-breast-cancer/

Dx 8/23/2019, IDC, Left, 2cm, Stage IV, metastasized to bone, Grade 3, 5/6 nodes, ER+/PR+, HER2- Targeted Therapy 9/19/2019 Ibrance (palbociclib) Hormonal Therapy Femara (letrozole), Zoladex (goserelin)
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Aug 3, 2020 11:58PM Bliss58 wrote:

I-beat-it. I too was dx oligometastatic with two small bone mets to the hip and T11. I think that status convinced my MO and BS to go ahead with surgery. I had neoadjuvant TCHP hoping for enough tumor shrinkage to have a lumpectomy. My response wasn't complete enough, so I and my team decided on mastectomy which I was ready for all along. Afterwards, I also had radiation then started an AI. After 4.5 yrs of NEAD, I developed a couple liver lesions. Without surgery and radiation, I might've gone that long without liver progression, but maybe not. I don't regret my decision. You don't want to just nod your head and go along with treatment if you're not completely onboard with it and you may want something else. Your MO should be a partner in your treatment. If he's not serving your needs and listening, it might be time to get another MO. He must fully explain his reasoning to you for treatment to your satisfaction and all your options. I hope you can get more answers from a 2nd opinion.

Dx at 56 06/2015, IDC left, 4cm, de novo mets to bone; dx 04/2020 progression to liver. Dx 6/1/2015, IDC, Left, 4cm, Stage IIIA, Grade 2, ER+/PR+, HER2+ (FISH) Dx 6/30/2015, Stage IV, metastasized to bone Radiation Therapy 12/16/2015 External: Bone Surgery 2/16/2016 Lymph node removal: Sentinel; Mastectomy: Left Radiation Therapy 5/8/2016 External: Lymph nodes, Chest wall Hormonal Therapy 2/1/2018 Aromasin (exemestane) Dx 4/2020, IDC, Stage IV, metastasized to liver, Grade 3, ER+/PR+, HER2+ (IHC)
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Aug 6, 2020 09:45AM I-beat-it wrote:

ladies thank you so much for all the support ❤️ it is nice to be heard, I am glad and grateful to be here and have your support. My MO knows how well makes me panic, when I panic I forget everything, even I can’t read my note/ list of questions. I wish I could take you to my next appointment with my MO. Bless you all.
The information you shared, made me thinking that possibly I could be an oligometastatic, but never knew. I had only one lymph node and a lesion in l- spine and 2 very small ones in t-spine (now 3 other spinal bones are showing small lesion- thankfully stable). Delay in starting treatment caused l-spine fractured and lesion entered to epidural space, which is not a good thing, mri showed 2 areas in my cord affected by those spreading lesion, so I have to take mri every 2 month to monitor those 2 nasty spots which I did Tuesday, yesterday a call from neuro oncologist office ask for an urgent meeting today....I am not ready for another bad news....

I tried to get second opinion from MD Anderson, unfortunately, they don’t offer online/ virtual review/ meeting, nor plan of treatment. And they want to run all tests they need in their own hospital even biopsy. They also mentioned all the patients that travel to Texas, looking for clinical trials which MD Anderson is famous for individualization of those treatments.

De Novo Dx 9/2019, IDC, Left, 4cm, Stage IV, metastasized to bone/other, Grade 2, ER+/PR+, HER2- (IHC) Hormonal Therapy Zoladex (goserelin) Hormonal Therapy Femara (letrozole) Radiation Therapy External: Bone Targeted Therapy Ibrance (palbociclib)
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Aug 6, 2020 10:50AM illimae wrote:

I beat it, I live in Houston and go to MDA, it’s absolutely true that they’ll retest everything even if it’s been done a week earlier somewhere else. They also stay very busy, so yeah, you’d have to get here and have a ton of appointments. I am happy with them though, they treated me aggressively as oligo with “curative intent”, so far, so good. Good luck with whatever you decide.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Targeted Therapy 1/1/2017 Perjeta (pertuzumab) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/19/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 6, 2020 04:01PM Lynn1234 wrote:

Hello!

I found out i was de novo just about 3 weeks after the mastectomy, right after i started chemo. I had radiation to the mets on my T-7,8 and 9 and sacrum after that. I don’t know why they didn’t do a full body scan before that time-before the surgery even. But i am doing well! Still on first line herceptin, anastrozole and xgeva after over 7 years now. Still stable. The only thing i regret is that if i know that i would still be stable i might have had reconstruction. It seemed like all hell broke loose and i thought I wasn’t going to make it being stage 4 and all, so I didn’t want to go through the ordeal of more surgery

Tricia

Dx 3/26/2013, IDC, Right, 5cm, Stage IV, metastasized to bone, 1/27 nodes, ER+/PR-, HER2+
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Aug 6, 2020 05:16PM cyathea wrote:

Tricia, you made my day hearing that you’ve been doing well for 7 years. Here’s to at least another 7

Dx 6/17/2019, DCIS/ILC, Right, 5cm, Stage IV, metastasized to bone, Grade 2, ER+/PR-, HER2+ (FISH) Targeted Therapy 8/1/2019 Perjeta (pertuzumab) Chemotherapy 8/1/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Chemotherapy 10/8/2019 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 10/10/2019 Herceptin (trastuzumab) Surgery 3/17/2020 Lymph node removal: Left, Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 4/15/2020 Other Radiation Therapy 6/1/2020 3DCRT: Breast, Lymph nodes, Bone Hormonal Therapy 8/20/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Herceptin (trastuzumab)
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Aug 6, 2020 07:06PM KBL wrote:

Hi, Lynn. Thank you for sharing. I’m sorry you didn’t find out until after your surgery. I’m so glad you’re doing well after seven years. That does give so much hope.

Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Targeted Therapy 6/23/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole)
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Aug 6, 2020 07:15PM Lynn1234 wrote:

I’m so glad I found this thread! You all are a great group and I wish all of youthe best!


Dx 3/26/2013, IDC, Right, 5cm, Stage IV, metastasized to bone, 1/27 nodes, ER+/PR-, HER2+
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Aug 7, 2020 05:44AM KBL wrote:

Thank you, Lynn. I’m so glad we’re all together sharing our stories.

I had a bone biopsy yesterday to finally see if the lesions in my back since 2013 are cancer.  I don’t know if I posted here that I had an updated MRI on my spine last month, which showed significant progression in the lesions. Since I didn’t know if it was cancer, I asked to have it biopsied. I will know in about a week. 

Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Targeted Therapy 6/23/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole)
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Aug 7, 2020 08:57AM lauawill wrote:

Hi, everybody!

I just spent half an hour skimming through this thread, and I have to say I feel a little bit better about things. I was diagnosed this past Wednesday, August 5. My first inkling that something was wrong was way back on June 13. I woke up in the middle of the night with a stabbing chest pain that just wouldn't go away. My primary's office diagnosed it (over the phone; thanks COVID) as costochondritis, since I'm in very good health otherwise. I started medicating with anti-inflammatories, and it mostly went away ... until early July, when the pain came roaring back in my lower left ribcage.

And then life threw me a wicked curveball: On the same day my Dad went into the hospital for the last time, I discovered a lump that I swear had not been there just a month before. And I knew. I just knew. There's a history of breast cancer in my family but all the other women were diagnosed in their mid-60s. My Dad died on July 12. I turned 50 on July 13.

A week later I called the primary again to see what I should do about a) the pain, and b) the lump. She sent me to urgent care for a chest x-ray, which clearly showed the lump. I had a mammogram with ultrasound the next day, a biopsy the day after that, and then a breast MRI. Last Friday I got the call: Invasive ductal carcinoma with cancer cells also found in a nearby lymph node, and seen on the MRI in a distant lymph node; "areas of concern" in the sternum, spine, ribcage, and liver.

Since then I've met with my care team. My medical oncologist set out a course of treatment even before my bone scan and CT scan. (Bone scan was yesterday; CT scan will be Monday.) I'm looking at one chemo treatment every other week for 8 weeks, and then something different every week for 12 weeks after that. Again, all of this decided before he even sees the scans. So...yeah. I'm fearing the absolute worst. My initial chest pain was likely the cancer in my sternum and ribs. Now my neck is stiff and my lower back isn't quite right. There's a chance it's in my liver as well; the CT scan on Monday will reveal it.

So I'm terrified. But feeling a little bit better having read all of your stories -- especially the ones that include something like, "It's been X years and I'm still here." I still want to be here in 20 years, much less 3 or 5. You've all given me a bit of hope. Thanks,

Laura

Dx 8/5/2020, IDC, Left, 2cm, Stage IV, metastasized to bone/liver/lungs, Grade 2, ER+/PR-, HER2-
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Aug 7, 2020 09:15AM illimae wrote:

lauawill, sounds a lot like me with the sudden lump and family history in their 60’s (mom and maternal aunt), that was back in 2016.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Targeted Therapy 1/1/2017 Perjeta (pertuzumab) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/19/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 7, 2020 11:22AM I-beat-it wrote:

Hi KBL, I was about to ask your bone biopsy, I hope it went well, I mean pain-free, and you’ll get a good result. Please update us with the news, sending vibes. (Since you started this thread I barely check on other groups! )

I also have a good news, the mri showed stable!!!! Finally a good news after a while. A nurse made a mistake, when called me an urgent appointment, that was very stressful 24 hours of my life but at the end the good news washed it away!

Have a nice weekend everyone.


De Novo Dx 9/2019, IDC, Left, 4cm, Stage IV, metastasized to bone/other, Grade 2, ER+/PR+, HER2- (IHC) Hormonal Therapy Zoladex (goserelin) Hormonal Therapy Femara (letrozole) Radiation Therapy External: Bone Targeted Therapy Ibrance (palbociclib)
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Aug 7, 2020 11:33AM candy-678 wrote:

I-beat-it- So no need for second opinion? Hope that is the case.

Found mets on CT for unrelated issue. I only had 2 treatments with IV chemo for the Stage II, then found Stage 4 and switched to hormone therapy/targeted therapy. I consider myself de novo. Also using Xgeva injections for bone mets Dx 6/2017, ILC/IDC, Left, 3cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Dx 9/2017, ILC/IDC, Stage IV, metastasized to bone/liver, 0/1 nodes, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole), Zoladex (goserelin) Chemotherapy AC Surgery Lymph node removal: Sentinel; Mastectomy: Left
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Aug 7, 2020 01:21PM - edited Aug 9, 2020 02:44PM by KBL

lauawill, thank you for sharing your story. I'm so sorry you are here, but this group of ladies is really awesome, so any questions, please don't hesitate to ask. I'm sorry about the loss of your dad right before your birthday. I know how hard that is. I buried my father right before my daughter's fifth birthday. I always look at her pictures from back then and know exsctly which birthday it was. I was 33 then.

I hope you do find comfort in this thread, and please keep us posted on how you're doing.

I know this may sound weird, but looking back on my diagnosis, I am grateful I was de novo just because I can't even imagine how hard it is for the women who have a recurrence. It is scary knowing we're Stage IV, but there are women on here who have done great with their treatment. I'm still on my first line after being on the meds since June of 2019. I have not had chemo.


I-beat-it, thank you for thinking of me. I'm a little, shall we say, tender today. I had to go in my husband's truck for a little ride, and the roads around here suck LOL. I came home, took some Tylenol, and am back resting in bed. I'll keep you posted.

I'm so glad you are liking this thread. I'm sure we'll have more ladies telling us their stories as time goes on. It is sad but nice to know we're not alone.

Congratulations on being stable. That's great news.

Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Targeted Therapy 6/23/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole)
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Aug 7, 2020 02:13PM hjernt wrote:

Hello friends!!

Welcome to the new posters! I have gotten a lot out of this 'group within a group'. I take comfort that ya'll are coming at this the same way I am and we truly have a shared experience being de novo.

Update from me: This has been a week of appointments: Cardiology echo, MO checkin, treatment (infusion H and P) and then cardiologist follow up today.

I have an appointment to have my drain removed next Tuesday. Fluid collected has gotten down low enough that I should be good for removal. I will be very happy to be done with the drain. But I know many women have 3 or 4 drains after surgery so I'm not complaining. It amuses me to think about how my husband would deal with one drain. I expect there would be a lot of wailing. Women are just amazing with what we can manage and still push onwards.

MO was very pleased with the pathology from surgery. He still does not want to move forward with Radiatiob because the last bits should be taken care of by the targeted therapies to which I am responding 'very well'. He did discuss it more with the BS but has not changed his opinion. I defer to my MO because he has more experience with Stage 4 spread than my BS. I think the BS more often has patients that are one and done instead of ongoing treatment. I'm OK with this plan and am pleased to have had surgery.

Hot flashes are better, although the effexor makes me quesy all day. I just started taking it at night and am hoping that will help.

Echo looks good with nothing changing from last echo in April. Unfortunately my blood pressure is a bit high (can be caused by Herceptin) so Cardiologist wants to monitor it. I'll be buying a cuff for at home daily checks and recording. I am meeting with him again in 6 weeks to review. It is possible my BP is higher because I am still recovering and because I have a drain stuck in my side which is uncomfortable. He said that is why he wants to track it instead of prescribing something.

That's the latest! I've been walking a bunch and using small weight for some arm exercising. Have to wait another 3 weeks before anything more but I've been enjoying the walks! I just have to get outside early to avoid the Texas heat.

Hugs to all! KBL, I am thinking of you as you wait for biopsy results.

And lauawill, hang in there. It is so so terrible right after diagnosis and then dealing with the loss of your father. It will get easier and you will find your new routine. I found it helped to have a plan. Good luck with your treatment!

Lynn, I totally hear u with the whirlwind of finding Mets after already starting down a treatment path. And also, I went to a dark place with Stage 4 diagnosis. My husband was even worse. Since then and thanks to all the amazing women on these boards, I am looking forward to living!

Dx 12/19/2019, ILC, Both breasts, Stage IV, metastasized to bone, ER+/PR+, HER2+ Targeted Therapy 1/16/2020 Herceptin (trastuzumab) Targeted Therapy 1/16/2020 Perjeta (pertuzumab) Chemotherapy 1/16/2020 Taxotere (docetaxel) Surgery 7/15/2020 Lumpectomy: Left, Right; Prophylactic ovary removal
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Aug 7, 2020 03:25PM KBL wrote:

hjernt, that’s quite the list of visits. I bet you’re tired. I’m so glad you’ll be getting your drain removed. I have never dealt with that, but I’m sure it’s a pain. I’m so happy your treatment is going well. That’s great. 

Thank you for your hug. Hugs back. We know the wait is the hard part, but I truly won’t be surprised if it is cancer and won’t be surprised if it’s benign. I just want an answer. You know we just need answers.  We can deal with what comes after the answer.  I used to work out all the time before diagnosis and have never stopped walking, but once I find out how my bones are, I plan to at least add yoga or something more to get moving again. 

I hope your blood pressure regulates. 

Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Targeted Therapy 6/23/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole)
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Aug 8, 2020 06:46PM JavaJana wrote:

Welcome i-beat-it and lauawill! I'm sorry you're part of our club, but glad you are here Medicating

hejernt, happy that surgery is behind you and seemingly went well - losing the drain will be a relief

KBL prayers you get good news from your bone biopsy

I had my last Taxotere (along with neulasta) and now will just be on the HP infusions, I think most of my SE were from the chemo so looking forward to just the other two. Overall I'm grateful the SE were very manageable and minimal in the big scheme. I got dental clearance so will be starting Xgeva soon along with AI, maybe atnext week's appointment. I am hoping I will tolerate whatever SE those two throw at me!

Wishing all of you many blessings- Jana

Xgeva 9/2/2020. History: 2 Borderline Serous Ovarian Carcinoma TAH/BSO, 0/15 nodes - 2/18/20. Benign Papilloma/ADH Left breast, excisional biopsy 10/11/2016 Dx 10/1/2019, IDC, Left, <1cm, Stage IB, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (IHC) Dx 10/23/2019, LCIS/DCIS, Right, 0/1 nodes Surgery 11/19/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right Dx 3/25/2020, IDC, Stage IV, metastasized to bone, 0/2 nodes Chemotherapy 4/8/2020 Taxotere (docetaxel) Targeted Therapy 4/8/2020 Herceptin (trastuzumab) Targeted Therapy 4/8/2020 Perjeta (pertuzumab) Hormonal Therapy 8/13/2020 Femara (letrozole)
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Aug 8, 2020 07:42PM KBL wrote:

Thank you, JavaJana. I hope your new treatments go well.

Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Targeted Therapy 6/23/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole)
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Aug 9, 2020 09:26AM - edited Aug 9, 2020 09:30AM by lauawill

Howdy, gang!

So after reading through a lot of your posts and looking at your diagnosis dates, I'm feeling like maybe this diagnosis does not mean the immediate end of my world. My world will be radically different from what I imagined, that's for sure, but I'm trying to stay focused on what I need to do today and in the immediate future to take care of myself, and set a few smallish goals for tomorrow. I'm looking at chemo through the end of 2020, at which point I'm going to stay up until midnight on December 31 not to ring in 2021, but to make sure 2020 actually leaves. I want to meet my new great-nephew next year (born in February 2020 at the beginning of the pandemic), get back to Wrigley Field to cheer for my Cubs next summer (assuming there's baseball and it's safe for me to be out and about), and see my daughter graduate from college in a couple years. Today is my husband and my 23rd wedding anniversary; I want to be here for our 25th, and maybe even take our long-planned trip back to Mackinac Island to celebrate. I want to be able to run a 10k again, or at least a 5k.

I have an echocardiogram and CT scan tomorrow. Chemo is tentatively scheduled to begin on Tuesday, assuming the ECG comes back clean. I'm dealing better with the pain from the bone mets and hopeful that the CT scan will show that liver mets aren't really present. But even if they are ... I will deal with it. It's all I can do. Take every day as it comes and keep my mind clear for tomorrow.

Laura

Dx 8/5/2020, IDC, Left, 2cm, Stage IV, metastasized to bone/liver/lungs, Grade 2, ER+/PR-, HER2-
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Aug 9, 2020 10:05AM SondraF wrote:

Lauwa - glad to see it looks like you are coming to terms with things in your own way, and that is awesome. I mean, really, what's the alternative? :) In addition to hanging out with this super-select crew you may want to also pop into the Bone Mets thread and the August 2020 Chemo Sisters thread (under the Chemo section, not this one) for support and information. Good luck this week, and keep us updated on your progress!

Dx 9/27/2019, IDC, Right, 5cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Targeted Therapy 11/29/2019 Ibrance (palbociclib) Hormonal Therapy 11/29/2019 Femara (letrozole), Zoladex (goserelin)
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Aug 9, 2020 12:45PM Bliss58 wrote:

Lauawill, welcome! I am on Xgeva and will advise having the nurse inject slowly to avoid nausea. I got that advice from the Bone Mets thread, and for me it was true. One time, a substitute nurse injected me all at once before I could tell her to inject slowly. It was the only time I felt nausea from Xgeva, otherwise, it's treated me well. After that, slow injection was noted in my record.

You might visit another thread called "Life is not over with a Stage IV diagnosis - Really!" There we report all the good things we can still have in this new life. My daughter was 16 when I was diagnosed. Since then, I have seen her graduate HS, go to college and next week, we celebrate her 21st birthday. I've also been able to travel, celebrated my 25th anniversary and I'm expecting to be here for my 30th next year. I trust you'll be around for a long while, too, to meet all your goals!

Dx at 56 06/2015, IDC left, 4cm, de novo mets to bone; dx 04/2020 progression to liver. Dx 6/1/2015, IDC, Left, 4cm, Stage IIIA, Grade 2, ER+/PR+, HER2+ (FISH) Dx 6/30/2015, Stage IV, metastasized to bone Radiation Therapy 12/16/2015 External: Bone Surgery 2/16/2016 Lymph node removal: Sentinel; Mastectomy: Left Radiation Therapy 5/8/2016 External: Lymph nodes, Chest wall Hormonal Therapy 2/1/2018 Aromasin (exemestane) Dx 4/2020, IDC, Stage IV, metastasized to liver, Grade 3, ER+/PR+, HER2+ (IHC)
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Aug 9, 2020 02:48PM - edited Aug 10, 2020 06:46AM by KBL

Lauawill, I'm so glad you've found comfort in this thread, and as Sondra and Bliss said, there are others that may help you along the way. I hope your testing tomorrow goes well. Pop in and tell us how it went.

Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Targeted Therapy 6/23/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole)
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Aug 9, 2020 10:03PM Lynn1234 wrote:

KBL -Praying and hoping for the best for you on the biopsy result!

Dx 3/26/2013, IDC, Right, 5cm, Stage IV, metastasized to bone, 1/27 nodes, ER+/PR-, HER2+
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Aug 9, 2020 10:04PM Lynn1234 wrote:

I beat it——stable is awesome!!

Dx 3/26/2013, IDC, Right, 5cm, Stage IV, metastasized to bone, 1/27 nodes, ER+/PR-, HER2+

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