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Topic: Bad Scan News

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: Mar 14, 2018 07:31PM

Snowfall wrote:

I had my PET-CT today, and the news isn't so good. Back in August when I was diagnosed, I had liver lesions and lung nodules. The liver was more concerning, but happily responded well to TDM2. I got moved to Xeloda/Tykerb after 6 rounds of TDM1 because the lung nodules were growing. After three cycles of Xeloda, the liver may still be okay, but the lung nodules are growing and spreading, now in both lungs.

We've tried 6 different kinds of chemo. The bottom line is that my cancer does not respond to chemo, hust laughs in its face. While I'm HER2 positive, I also haven't had a good response to Herceptin or Perjeta. At this point, it's looking like the options are to continue trying chemo simply to be doing something, consider a Phase 1 trial here at Mayo (we don't even know if there's an appropriate one available, but will look into it), or go off treatment and handle symptoms as they arise until the end. I'm pretty sure I'm not interested in taking dramatic measures to pursue treatment at all costs. In my heart, I know I would be mad at myself if I wind up on my deathbed having spent the previous months on ineffective treatment rather than living the good days while I have them. At the rate that the lung nodules are growing, my oncologist's best guess that I'll have several months before it becomes life threatening.

Lots to process here. I don't mind dying, but it's kind of sad to think of all I will miss. I really hate the pain that it brings to my family. On the one hand, there are no bad choices here, but partly that's because that the other hand is that there are no good choices.


Dx 10/2016, IDC, Left, Stage IIA, Grade 3, ER-/PR-, HER2+ Targeted Therapy 11/1/2016 Perjeta (pertuzumab) Targeted Therapy 11/3/2016 Herceptin (trastuzumab) Chemotherapy 2/1/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Chemotherapy 5/4/2017 AC Surgery 7/24/2017 Mastectomy: Left Dx 8/10/2017, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2+ Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab) Targeted Therapy Tykerb (lapatinib) Chemotherapy Xeloda (capecitabine)
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Mar 14, 2018 07:52PM Grannax2 wrote:

I don't really know you, haven't read many of your posts, but I am so sorry to hear that all of you TX has failed you. It sounds like we had MBC DX at the same time, December of 2016 . Mine was such a shock with mets to liver, lung and chest. So, in exactly the same amount of time on only one drug combo and two local procedures to my liver, I've had mostly good response. How is this fair? It is not. I wish it could have been fair for you. Someday I might be in your situation, I cannot predict what I would do but I know I would be conflicted. I wish the best for you.đź’ž

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Mar 14, 2018 08:07PM SandiBeach57 wrote:

Hi, I am sorry you have the added stress of searching for treatments. You did not mention, but were fresh biopsies taken from your lung lesions? So no chance they are a different beast? Like hormonal positive? You never know what surprise treatments might turn this around. It sounds like you have folks working on your behalf to look for trials. I will be thinking of you.

2006 and 2007 DCIS ER+PR+, Oct 2016 Stage IV widespread liver mets, IDC, ER+PR-HER2-. Oct 2016 AC. Jan 2017 Letrozole/Ibrance
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Mar 14, 2018 08:36PM Bad_At_Usernames wrote:

I just started the DS8201 trial at Mayo Jacksonville. All the above treatments have failed me as well. I had Herceptin/Perjeta with Taxol neoadjuvantly, tdm1 in a adjuvant clinical trial for locally advanced, Tykerb/Xeloda 2016 and retried HP with Taxotere last fall. DS8201 is like Tdm1 but twice as potent. I don’t know what mayo location you go to but it might be available to you. It’s had great preliminary results. Another option would be that Cascadian Therapies recently opened a compassionate usage program for Tucatinib so ppl can get it outside of the Her2 climb

"...to survive this disease, you had to be an eternal optimist and very aggressive..." -Vince DeVita Dx 12/23/2013, IDC, 6cm+, Stage IIIC, Grade 3, ER+/PR+, HER2+ Chemotherapy 1/15/2014 AC + T (Taxol) Targeted Therapy 3/16/2014 Perjeta (pertuzumab) Targeted Therapy 3/16/2014 Herceptin (trastuzumab) Surgery 7/10/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Radiation Therapy 8/28/2014 Breast, Lymph nodes Targeted Therapy 9/22/2014 Kadcyla (T-DM1, ado-trastuzumab) Hormonal Therapy 11/17/2014 Zoladex (goserelin) Hormonal Therapy 1/31/2015 Femara (letrozole) Dx 1/7/2016, IDC, Stage IV, metastasized to brain Targeted Therapy 1/14/2016 Verzenio Radiation Therapy 7/26/2016 External: Brain Targeted Therapy 11/15/2016 Tykerb (lapatinib) Dx 3/23/2017, IDC, Stage IV, metastasized to liver Chemotherapy 3/28/2017 Xeloda (capecitabine) Chemotherapy 8/29/2017 Taxotere (docetaxel) Radiation Therapy 2/26/2018 External: Brain
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Mar 15, 2018 07:57AM MJHJAN1014 wrote:

Snowfall- what a difficult place to find yourself. I am thinking of you just now and pulling for a treatment that will zap this flipping cancer. You will get your hands on one of the drugs suggested above and go from there. May the force be with you. MJH

Dx 1/10/2014, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 1/29/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 2/9/2014 Breast Chemotherapy 3/4/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 6/10/2016, IDC, Right, 1cm, Stage IV, metastasized to bone/liver, Grade 3, 0/1 nodes, ER+/PR+, HER2- Hormonal Therapy 11/14/2017 Faslodex (fulvestrant) Chemotherapy 3/21/2018 Xeloda (capecitabine) Dx 3/7/2019, IDC, Stage IV, metastasized to other, Grade 3, ER+/PR+, HER2- Chemotherapy 3/7/2019 Doxil (doxorubicin) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Mar 15, 2018 08:22AM Kkrenz wrote:

Snowfall- I have been looking into this trial.  https://clinicaltrials.gov/ct2/show/NCT03319459

I'm not sure what Mayo you are going to, if you are in Minnesota, this is at University of Minnesota. Please keep us updated

Kris Dx 3/30/2017, IDC, Both breasts, Stage IV, metastasized to brain/bone/liver, ER+/PR-, HER2+ (IHC) Targeted Therapy 4/12/2017 Herceptin (trastuzumab) Targeted Therapy 4/18/2017 Perjeta (pertuzumab) Chemotherapy 4/18/2017 Taxotere (docetaxel) Hormonal Therapy 1/1/2018 Arimidex (anastrozole)
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Apr 25, 2018 08:58PM - edited Apr 25, 2018 09:12PM by Snowfall

First, thank you all for your kind responses. It's been six weeks since my progression scan results. They've been tough weeks for me and my husband, and probably for family and friends as well. It's scary being off treatment when you know you have an aggressive cancer.

I have been accepted into the DS-8201a Phase II trial. I'm excited to be in the trial, because the drug has been pretty successful for people with my treatment history and pathology. I probably won't get my first infusion until May 15th, 9 weeks from when I stopped Xeloda and Tykerb and almost 7 months since my last progression-free scan. I'm hoping the fact that I'm not dead yet means the cancer is somewhat less aggressive at this point than they thought it might be.

Next week, I go for all my baseline scans. I'm not nervous about the process, but I am steeling myself for unpleasant results. We will be using CT scans rather than PET scans, so I know the measurement variables will be entirely different and more precise for my mets in lungs, liver, and lymph nodes. Nine weeks off treatment almost certainly means progression. I'm going to have another brain scan, which has me a little nervous. My last one was in May 2017 and showed no mets, but that was before the mets were detected elsewhere.

I'm still pretty much symptom-free. I notice various physical changes, but can easily attribute them to things other than cancer. I'm tired and sleeping more than I usually do, and I seem to have a cold that won't quit. Cold medicine helps the cough and rough breathing, so I figure either Vicks has a cure for cancer that they haven't recognized yet or it really is just a cold and not dramatic progression in my lungs.

At this point I am focused on finishing out the semester (I'm a college prof) and getting ready for treatment. The trial site is an 8-hour drive from home, and I'll have to be there for three or four days out of each of the first 5 to 6 weeks. After that, treatment is just every third week. I've tried to get my work colleaguesprepared for me being on a wacky schedule or unavailable in the fall semester, but it's hard to know what to say to them. I look and seem healthy. They know about my diagnosis, prognosis, and treatment plan and have been very supportive so far, but I hate to leave them in a lurch. On the other hand, I may be feeling great by September and be able to work almost full-time. The uncertainty is frustrating, so I find myself focusing more on today.

Again, thanks for the support here. I post rarely, because my case is unusual in that I am in the small group of nonresponders to HER2 directed therapies, so I don't know that my experience is very helpful for others. I read every day, and you all help motivate me to get out there and live my life, whatever that means for that day.


Dx 10/2016, IDC, Left, Stage IIA, Grade 3, ER-/PR-, HER2+ Targeted Therapy 11/1/2016 Perjeta (pertuzumab) Targeted Therapy 11/3/2016 Herceptin (trastuzumab) Chemotherapy 2/1/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Chemotherapy 5/4/2017 AC Surgery 7/24/2017 Mastectomy: Left Dx 8/10/2017, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2+ Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab) Targeted Therapy Tykerb (lapatinib) Chemotherapy Xeloda (capecitabine)
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Apr 25, 2018 11:42PM BellasMomToo wrote:

Snowfall: Thanks so much for your update. As you can see, we both were dx'd at the same time, are both ER-/PR-/Her2+, and had TCHP. I'm sooo sorry the therapies didn't work for you.

PLEASE continue to post -- we (well, I) need to be reminded (hope) that new therapies are in the works, especially for us Her2+ gals. Thank you for participating in the trial.

Sending positive thoughts your way.

Dx'd at age 56. Tumor found by my annual mammogram -- cancer can grow fast! Dx 10/6/2016, IDC, Left, 2cm, Grade 2, 0/1 nodes, ER-/PR-, HER2+ (IHC) Dx 10/6/2016, DCIS, Left, Stage 0, ER+/PR- Targeted Therapy 11/2/2016 Herceptin (trastuzumab) Chemotherapy 11/2/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 11/2/2016 Perjeta (pertuzumab) Surgery 3/27/2017 Lymph node removal: Sentinel; Mastectomy: Left
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Apr 26, 2018 06:37PM - edited Apr 26, 2018 06:45PM by sincitydealer

Snowfall, Since you're HER2+ ask your doc about a trial of a drug called Poziotinib. I hear they're having great success with it in HER2 patients. The side effects can be harsh (diarrhea and rash), but you can always ask for a dose reduction if they're not manageable. One member here, Denny123, was on it for only 8 days, and it knocked the cancer way back! Poziotinib is taken in pill form. This would be another arrow in your quiver if the trial you're currently in doesn't help.

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May 26, 2018 07:03AM Denny123 wrote:

Sincity-I second that message.

I just had a second CT scan and actually, 8 days on Poziotinib put me into almost-remission....I now have no evidence of disease.  Currently on Xeloda and Herceptin for maintenance.

Dx 12/14/2002, IDC, Both breasts, 5cm, Stage IV, metastasized to liver/other, Grade 3, 4/40 nodes, mets, ER+/PR+, HER2+ Surgery 2/20/2003 Lymph node removal: Left, Right; Mastectomy: Left, Right; Reconstruction (left): Latissimus dorsi flap; Reconstruction (right): Latissimus dorsi flap Chemotherapy 3/31/2003 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Gemzar (gemcitabine), Taxotere (docetaxel), Xeloda (capecitabine) Radiation Therapy 10/10/2003 Breast, Lymph nodes Targeted Therapy 1/30/2004 Herceptin (trastuzumab) Hormonal Therapy 7/5/2011 Faslodex (fulvestrant) Targeted Therapy Targeted Therapy Herceptin (trastuzumab)
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May 26, 2018 09:51AM Daniel86 wrote:

Snowfall, we are rooting for you. Let us know how things are going.

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