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Topic: Good for 8 years.....and now it's back......and it's everywhere

Forum: Just Diagnosed With a Recurrence or Metastasis —

Meet others who are just facing the diagnosis of a recurrence of breast cancer or metastatic (advanced) disease. You are NOT alone.

Posted on: Aug 1, 2020 08:04AM

arissasmom wrote:

I was diagnosed in 2012 Stage 2 / Grade 2. Did lumpectomy, four rounds of TC (which almost killed me), 6 weeks of radiation and 8 years of tamoxifen. Now I have one brain met, one bone met and a huge lung tumor with like a million positive lymph nodes.

I just wanna cry all.the.time. I don't wanna do this again. Especially chemo. I still have flashbacks of how horrible that was. Someone, please, talk me off the ledge.

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Aug 1, 2020 08:20AM - edited Aug 1, 2020 08:24AM by ShetlandPony

Hi, arissasmom. I looked back at your earlier posts and saw what a hard time you had with TC and how they may not have given you proper meds to help you. Listen, your stage iv treatment is likely to be easier. It is not going to be TC all over again. Maybe you will start with a hormonal therapy plus a targeted therapy, or a milder chemo, possibly with some targeted radiation. Are you at the same place for treatment now and are you ok with that?

When you get a chance, enter your Diagnosis and treatment “stats" on your profile and make it public so BCO members can see it and give you relevant comments.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Aug 1, 2020 08:32AM Moderators wrote:

arissasmom,

We're so very sorry for the reasons that bring you back here, but we're glad you've come back to us. We're all here to help and support you!

As ShetlandPony mentions, there are a lot of options for treatment with a recurrence/metastasis. There's hope, even though it feels hopeless.

Join us in the Stage IV ONLY forum for some encouragement on managing a metastatic diagnosis. We know it's hard, but being a part of this community WILL help!

Sending lots of positive vibes your way!

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Aug 1, 2020 08:42AM - edited Aug 1, 2020 01:17PM by Sunshine99

arissasmom, I'm so sorry. It's so scary to think you're in the clear and then get hit with a diagnosis of mets. I,too, did chemo the first time but no radiation.

Now I've had palliative radiation and have begun the targeted therapy (sometimes referred to as oral chemo) and a monthly infusion of Zometa to help my bones. Do NOT confuse the word "palliative" with "hospice", like I did. I thought they both meant end of life, and they do not. If/when the docs talk about palliative care, it will be to help your symptoms/pain. Hopefully, you'll start to feel a little better when you have a treatment plan in place.

I agree with the Moderators that you might find it helpful to go to the Stage IV forums and check them out. There are ladies who have had Stave IV mets for more than a few years, and it's reassuring to see that they're still with us.

All the best to you!

Cancer has progressed to my bones. I pray that it never enters my soul. Dx 11/2/2007, IDC, 3cm, Stage IIA, 0/3 nodes, ER+/PR+, HER2- Dx 3/26/2020, ILC/IDC, Stage IV, metastasized to bone, ER+/PR-, HER2- (FISH) Hormonal Therapy 4/22/2020 Arimidex (anastrozole) Radiation Therapy 5/5/2020 External: Bone Radiation Therapy 5/12/2020 External: Bone Targeted Therapy 6/10/2020 Ibrance (palbociclib)
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Aug 1, 2020 09:12AM moth wrote:

hang in there, it gets better. I did cry all the time for quite a while after receiving my stage 4 dx. I think that's normal. I still cry but I think I skipped a few days ...

I'm sure your team will work with you to get treatment that you can tolerate.

Let us know your tumor markers and what your MO is suggesting.

Sending virtual hugs, Kleenex & soothing tea

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: nevertellmetheodds2017.tumblr.... 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 3/18/2020 Tecentriq (atezolizumab)
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Aug 1, 2020 09:39AM lehrski wrote:

Arissasmom. I’m so sorry you’re back here. It’s so hard to face everything again. You’ll find good support here to lift you up. I was diagnosed last Friday, 8 years after the first time as well. I started Arimidex last Monday and Verzenio yesterday. So far, so good. The first time was brutal but so far this is much better than the first time. Please message me if you need to talk about this with someone.

Dx 7/24/2020, IDC, Left, Stage IV, metastasized to bone/lungs, ER+/PR-, HER2-
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Aug 1, 2020 11:56AM exbrnxgrl wrote:

To all those newly dx’ed with mets, I offer no medical advice but just my personal observations. It’s a long story but I’m essentially de novo. I have just hit the 9 year mark and I can’t even begin to tell you how treatments have improved since my initdx. People often ask me why I’m not on Ibrance or Verzenio and are surprised to learn that neither drug had been approved when I was first dx’ed. Since I’ve been NEAD on AI’s only, my mo thinks we should leave well enough alone and I agree with her. There are so many more long time members of the stage IV threads than when I first joined. There’s a lot of reason for hope even if we still have a ways to go. Take very good care of yourselves.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Aug 1, 2020 01:59PM Sunshine99 wrote:

Arissasmom, I just read some of your earlier posts about the horrible experience you had with chemo. WOW! I'm so sorry. No wonder you dread having to face that again. I guess I got off easy with chemo the first time in 2008. I took steroids (don't remember which) the day before, of and after chemo. They also gave me a drug called Aloxi, which was an anti-nausea drug. I had virtually no nausea or pain. On day four or five after chemo, I felt "yucky" , but that was really it. I had Taxotere and Cytoxin. I feel for you and am so sorry you are going through this again.

Let us know how you're doing. This is a wonderful place for support.

Cancer has progressed to my bones. I pray that it never enters my soul. Dx 11/2/2007, IDC, 3cm, Stage IIA, 0/3 nodes, ER+/PR+, HER2- Dx 3/26/2020, ILC/IDC, Stage IV, metastasized to bone, ER+/PR-, HER2- (FISH) Hormonal Therapy 4/22/2020 Arimidex (anastrozole) Radiation Therapy 5/5/2020 External: Bone Radiation Therapy 5/12/2020 External: Bone Targeted Therapy 6/10/2020 Ibrance (palbociclib)
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Aug 1, 2020 02:20PM fifthyear wrote:

So sorry you are going through this, sending positive thoughts, with love.

Dx 2007, IDC, Right, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy Breast
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Aug 1, 2020 04:12PM ShetlandPony wrote:

See, I really don’t think that arissasmom is necessarilygoing to “go through again” what happened before.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Aug 12, 2020 06:36AM arissasmom wrote:

Hey guys! Just thought I'd update you all - I will be starting Ibrance and Faslodex tomorrow. I'm feeling much better now that there's a plan (still kinda freaked out but better). Thank you all SO VERY MUCH for your kind words and encouragement! It means so much coming from people that actually get it. Anyways, I'll hopefully update in a week or so that everything is going great!!

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Aug 19, 2020 02:54AM KBeee wrote:

I am so glad your plan is in place. Hoping you tolerate teh combination well and that it kicks back those mets!

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/26/2013 Mastectomy: Left, Right Chemotherapy 9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/23/2014 Reconstruction (left); Reconstruction (right) Surgery 1/29/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Surgery 2/25/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Chemotherapy 3/31/2015 AC + T (Taxol) Radiation Therapy 8/25/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)

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