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Old 02-15-2016, 12:52 PM   #1
Lani
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Lightbulb discovering why some Stage IVs are exceptional responders to herceptin/lapatinib(long

term survivors) A single institution (U of Michigan, Ann Arbor)study

Breast Cancer Res Treat. 2016 Feb 13. [Epub ahead of print]
Clinical predictors of long-term survival in HER2-positive metastatic breast cancer.
Murthy P1, Kidwell KM2, Schott AF1, Merajver SD1, Griggs JJ1, Smerage JD1, Van Poznak CH1, Wicha MS1, Hayes DF1, Henry NL3.
Author information
Abstract
Prior to availability of anti-HER2 therapies, HER2-positive metastatic breast cancer (MBC) was associated with a poor prognosis. Prospective randomized trials have demonstrated survival benefit from anti-HER2 treatments. Anecdotal observations have suggested that a small but meaningful fraction of patients with HER2-positive MBC may be "exceptional responders" with long survival. We hypothesized that demographic and/or clinicopathologic characteristics can be identified to distinguish short-term from long-term survivors. A retrospective, single-institution review of 168 patients with HER2-positive MBC who received treatment with anti-HER2 therapy in the metastatic setting was performed. Cox proportional hazards analysis was used to assess factors associated with long-term survival. Median overall survival from the time of breast cancer recurrence was 3.9 years (95 % CI 3.4-5.2). From the time of diagnosis of MBC, 56 (33 %) survived for 5 or more years and 12 (7 %) survived more than 10 years. Of the 66 patients diagnosed with central nervous system metastases, 9 (14 %) survived more than 5 years following that diagnosis. Younger age at diagnosis, lower stage, hormone receptor positive status, and only having one organ involved at diagnosis were associated with longer survival. Four patients discontinued anti-HER2 therapy and are without evidence of progression of disease after a median 7.4 years (0.2-12.0) since stopping therapy. In a cohort of patients with HER2-positive MBC treated primarily with trastuzumab and lapatinib, 7 % of patients were "exceptional responders." Combining these clinical factors with molecular determinants of prolonged survival may provide insights for individualizing treatment selection.
KEYWORDS:
Brain metastasis; HER2 positive; Metastatic breast cancer; Survival
PMID: 26875184 [PubMed - as supplied by publisher]
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Old 02-15-2016, 05:31 PM   #2
StephN
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Wink Re: discovering why some Stage IVs are exceptional responders to herceptin/lapatinib(

This study does not give an answer to the post title, just tells us that a group of long term surviving patients has been narrowed down and identified through a U of Mich study.

Does not tell me where these patients live, if they are all from one treatment center or several, and a lot more unspecified.

I do particularly like this nugget of information:
"Four patients discontinued anti-HER2 therapy and are without evidence of progression of disease after a median 7.4 years (0.2-12.0) since stopping therapy."

My own case falls right into the median span of 7.4 years, at 7 years and 2 months since I had any Herceptin.

Would love to know what the next step is with what the study brought out.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 02-16-2016, 09:22 PM   #3
Lani
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Re: discovering why some Stage IVs are exceptional responders to herceptin/lapatinib(

All patients diagnosed with HER2-positive MBC and treated with at least 21 days of trastuzumab or lapatinib in the metastatic setting at the University of Michigan (U-M) Comprehensive Cancer Center between 1991 and 2015 were included. Potentially eligible patients were identified through review of pharmacy records. Patients with distant metastatic disease were included; those with locoregional recurrence (including axillary or supraclavicular nodal disease) or second primary tumors were excluded. Those patients who received only a single 3-week dose or fewer than 4 weekly doses of trastuzumab were excluded (Supplemental Fig. 1). Biopsies of suspected metastatic sites were performed at the discretion of the treating physician. HER2 status was determined clinically at the time of primary or metastatic diagnosis using immunohistochemistry and/or fluorescence in situ hybridization (FISH) according to period-appropriate institutional guidelines. This retrospective, single-institutional study was approved by the Institutional Review Board, which granted a waiver of informed consent.
Clinicopathologic characteristics of eligible patients were abstracted from the electronic medical record by two reviewers (PM, NLH), including demographics; dates of diagnosis of primary breast cancer, MBC and first progression; tumor characteristics at the time of original diagnosis and at the time of disease recurrence; initial sites of metastatic disease; systemic treatments received in the adjuvant and metastatic settings; date of last follow-up at U-M; and date of death, if applicable. Site(s) of metastatic disease at the time of diagnosis of MBC were grouped into four categories based on the findings demonstrated on imaging studies: single organ involvement (bone, viscera, and central nervous system (CNS)) and multi-organ involvement.
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Old 02-16-2016, 09:25 PM   #4
Lani
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Re: discovering why some Stage IVs are exceptional responders to herceptin/lapatinib(

Two hundred and forty-eight potentially eligible patients were identified (Supplemental Figure S1). Patients with in-breast recurrence (N = 11), patients with locoregional recurrence only (N = 14), patients who did not receive at least 21 days of trastuzumab or lapatinib therapy after diagnosis of recurrent disease (N = 28), and patients who were subsequently determined to not have HER2-positive recurrent disease (N = 13) were excluded. In addition, patients with only a single clinic visit at the institution (N = 14) were excluded because of lack of data about treatments administered. A total of 168 patients were eligible and included in the analysis.
Demographic factors and primary and metastatic tumor pathological characteristics for all eligible patients are given in Supplemental Table S1. Mean age at initial diagnosis of breast cancer was 47.9 (range 25.391.9). At initial diagnosis, 77 (46 %) patients had grade 3 disease, 101 (60 %) had HR-positive disease, and 49 (29 %) had stage 4 disease. Twenty patients (12 %) received adjuvant trastuzumab.
Median time to distant metastatic disease was 2.2 years (range 019.2 years). All 168 patients had radiographic evidence of distant metastases. Ninety-six (57 %) underwent biopsy to confirm distant metastasis. Sixty-six (39 %) patients developed CNS metastases during their disease course; it was the initial metastatic site of disease for 7 (4 %) patients.
Timing of initiation of HER2-targeting therapy was influenced by the year of diagnosis and duration of survival. In this cohort, first-line systemic therapy for metastatic disease contained trastuzumab for 71 %, lapatinib for 2 %, and endocrine therapy or chemotherapy without HER2-targeted therapy for 26.2 %. Forty-six patients received treatment with lapatinib (27 %), 18 (11 %) received ado-trastuzumab emtansine, and 15 (9 %) received pertuzumab as part of their second-line or later treatment regimens.
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Old 02-16-2016, 09:26 PM   #5
Lani
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Re: discovering why some Stage IVs are exceptional responders to herceptin/lapatinib(

Median follow-up from the time of diagnosis of MBC was 3.2 years (range 0.116.3 years). Median OS from the time of MBC diagnosis was 3.9 years (95 % CI 3.45.2 years; Fig. 1a). Notably, 56 (33 %) and 12 (7 %) patients were alive ≥5 years and ≥10 or more years, respectively, after diagnosis of MBC. Median PFS from the time of diagnosis of MBC to initiation of second-line therapy was 1.3 years (95 % CI 1.11.6; Fig. 1b). Of the 96 patients with biopsy-proven distant metastases, 5 (5 %) were free of detectable active disease by routine imaging at ≥10 years. There was no difference in survival between those with and without biopsy confirmation of metastatic disease (HR 0.88 [95 % CI 0.61.3], P = 0.49). For the 39 % of patients who were diagnosed with CNS metastases at any time during their disease course, median survival from the time of diagnosis of CNS metastasis was 1.5 years (95 % CI 1.12.6).
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Old 02-16-2016, 09:28 PM   #6
Lani
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Re: discovering why some Stage IVs are exceptional responders to herceptin/lapatinib(

. Of those who survived more than 10 years after diagnosis of MBC, 25 % had CNS metastases, compared to 40 % of those who survived less than 10 years.
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Old 02-16-2016, 10:50 PM   #7
Pamelamary
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Re: discovering why some Stage IVs are exceptional responders to herceptin/lapatinib(

Thanks Lani! My ambition is to be an exceptional responder.
__________________
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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Old 02-17-2016, 05:21 PM   #8
StephN
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Question Re: discovering why some Stage IVs are exceptional responders to herceptin/lapatinib(

Hope some day the research community will be able to dig down to the reason some can have lasting complete response and the rest of the patients can't. Oh where, oh where is the KEY???
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 02-17-2016, 06:37 PM   #9
Whonoze
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Re: discovering why some Stage IVs are exceptional responders to herceptin/lapatinib(

I think this is a step in that direction.
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Old 02-18-2016, 06:18 PM   #10
MaineRottweilers
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Re: discovering why some Stage IVs are exceptional responders to herceptin/lapatinib(

Pamelamary & StephN, are you both still on Herceptin?
__________________
Tracy Arcari
___________________________________________
11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%)
HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!
2/5/18 CT & BS = STABLE

//
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Old 02-18-2016, 07:47 PM   #11
Pamelamary
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Location: Melbourne, Australia
Posts: 483
Re: discovering why some Stage IVs are exceptional responders to herceptin/lapatinib(

Hi Tracy,
I am still on herceptin, with no immediate plans for stopping _ it's only been 4 years. However, StephN is one of the true "exceptional responders", off herceptin since 2008. I hope you are currently doing OK on the taxol.
Regards.... Pam
__________________
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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Old 02-19-2016, 05:18 AM   #12
MaineRottweilers
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Posts: 568
Re: discovering why some Stage IVs are exceptional responders to herceptin/lapatinib(

Doing much better on Taxol, physically. I'll have scans in March to see if Taxol is doing as well as the Taxotere did in maintaining stability. If it is, we're trying to decide if it's time for a chemo break. I'll stay on H&P q3w and Zometa if I can get my CA, PHOS, MG levels back up. There's talk of putting me on Arimidex for PR+ though there is no hard evidence that it will help. As long as the SEs aren't horrific, I think I will use it, every weapon I can. My goal is to reach your status of exceptional responder. I wonder how long H&P will be necessary, if I can get to NED. I'm informally collecting info about who is still on it long term and who went off and is doing well.
__________________
Tracy Arcari
___________________________________________
11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%)
HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!
2/5/18 CT & BS = STABLE

//
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Old 02-19-2016, 07:05 AM   #13
Lauriesh
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Re: discovering why some Stage IVs are exceptional responders to herceptin/lapatinib(

Tracy, I went off herceptin in jan, 2015 after being Ned for 4 years.
I had my scans in nov, still clear, so will be Ned for 5 years feb 23.

Laurie
__________________
diagnosed stage 2- 3/2005
4.5 cm & 2+ nodes , er/pr- & HER2+
4 AC
12 taxol/Herceptin
Year of Herceptin
liver mets- July-2010
7 taxotere/Herceptin
RFA- Feb.2011
NED
U of Wa vaccine trial-oct 2011-Feb 2012
Herceptin/tykerb
Ned - 2 1/2 years
Herceptin & perjeta
Ned 3 years
Herceptin- reducing treatments , due to s/e, to 5-6 a year
NED- 3 1/2 years
Ned - 4 years
2/15- stopped herceptin - on no treatment
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Old 02-19-2016, 08:31 PM   #14
Whonoze
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Re: discovering why some Stage IVs are exceptional responders to herceptin/lapatinib(

I've been on Perception for 9 years. I discuss going off with my one. She said she would be comfortable with me going off. The problem is that there is really no data to support staying on or going off at this point. I have minimal side effects so will stay on and keep looking for evidence either way.
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Old 02-20-2016, 09:38 AM   #15
scrunchthecat
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Re: discovering why some Stage IVs are exceptional responders to herceptin/lapatinib(

StephN - Which vaccine trial did you participate in at UWash??
I am being considered for one at NIH: NCT01730118.

sj
__________________
June 2015 - Stage IV, HER2+++, HR-. Mets to liver, assorted lymph nodes.
June 2015 - Begin THP
October 2015 - End THP, begin H&P. PET-CT shows resolution of mets to liver & lymph nodes.
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Old 02-22-2016, 01:57 PM   #16
StephN
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Re: discovering why some Stage IVs are exceptional responders to herceptin/lapatinib(

Hello SJ,
Glad you are having good results on your treatment. A vaccine trial could be a good fit for you at this juncture.

Yes, I have been off Herceptin and all other treatment (except twice-yearly Zometa) since Dec. of 2008.

The vaccine trial I was in was a peptide trial with an immune system booster. They have new trials now, but I am not sure what they all are.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 03-07-2016, 07:04 AM   #17
Joan M
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Re: discovering why some Stage IVs are exceptional responders to herceptin/lapatinib(

Thanks for posting this information. I guess I would be considered to be a long-term survivor since I've been NED since Oct. 2008, after having two lung recurrences and one brain met. I'm still on Herceptin.

I think I'm a long-term responder, but most oncologists probably wouldn't think so, since I reached NED through a combination of systemic treatment (Herceptin) and local interventions--surgery and RFA.

That's the dilemma.

I have oligometastatic breast cancer: see University of Chicago, Ludwig Center for Metastasis Research: Oligometastasis, a curable subset of metastatic disease (can't get link to work here in this post). And several of you who have been on this site for a long time know that I've mentioned this many times before.

Oligometastatic breast cancer is consider to be confined to 1 or 2 organs, with 5 or fewer mets in each organ.

I read about this in 2007 and firmly believed in it--especially in the age of targeted drug therapies (of which we HER2 survivors didn't have much back then). We are now so lucky to have several drugs in our toolbox! And think how many more of us could be long-term survivors if perhaps we used local interventions along with anti-HER2 therapies.

But, no. Most oncologists wouldn't dream of it, unless it's a last ditch effort (we've thrown the book at you and now your down to the end, so we'll ablate some of those liver tumors, because we have no other options).

Think of how frustrated we all get because we're excluded from clinical trials due to having had too many lines of therapy. That's right: the scientists want met survivors who perhaps haven't had any lines of therapy in the metastatic setting. But those same survivors probably have limited disease and would be able to use local interventions.

Then there's the snobby patients: those of us who would never dream of using a local intervention and who are most likely treated at a big fancy institution (that's ok. I fired Sloan-Kettering after a medical oncologist there tried to stop the RFA of my lung in 2008. The RFA has probably contributed to saving my life--at least up to this point, because I never consider myself cured. Sloan-Kettering couldn't care less about local interventions, unless of course you're at the end of your rope).

The best time to do it is from the get-go (like I did) or when you're stable, because eventually, the cancer is going to work it's way around the drugs that you're taking.

So, you can imagine how many more of us could be long-term survivors if you look at the stats in the article that Lani posted.

Clinical trials using radiation for only breast cancer mets. According to the first trial listed below:

"This randomized phase II/III trial studies how well standard of care therapy with stereotactic radiosurgery and/or surgery works and compares it to standard of care therapy alone in treating patients with breast cancer that has spread to one or two locations in the body (limited metastatic) that are previously untreated."

https://clinicaltrials.gov/ct2/show/...2364557&rank=1

https://clinicaltrials.gov/ct2/show/...1706432&rank=1

It seems as if U of Chicago radiation has been able to get through to the breast service there. Otherwise, they wouldn't be able to recruit enrollees.

Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity. No cancer, only fungus. Still continuing on only Herceptin. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Living with MBC for 11 years. Praying for NED forever!!

Last edited by Joan M; 03-07-2016 at 07:29 AM..
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Old 03-08-2016, 09:05 PM   #18
KaiM
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Re: discovering why some Stage IVs are exceptional responders to herceptin/lapatinib(

I am not sure if I qualify as a long term responder yet, but I sure do plan on getting there. I believe the reason I have been stable/NED since I finished my initial chemo and switched to Herceptin and Tykerb is because we treated my cancer so aggressively from the beginning. The Drs thought I was stage 2 and so they were treating me with curative intent.
__________________
9/11 - dx 3 mnths after giving birth to my 2nd child. (not a clogged milk duct) ER/PR- HER2+++
10/11 - Initially staged at 2b after unilateral mastectomy
11/11 - CT scan 4 weeks later found spots on bones and liver (crap!) Stage 4
12/11 - starting TCH
5/12 - STABLE. stoping TCH after 6 months and continuing Herceptin with Tykerb and Xgeva
8/12 - STABLE, but I'm calling it NED because all they see is bone scaring!
11/12 - STABLE
2/13 - STABLE
6/13 - STABLE
9/13 - STABLE
12/13 - STABLE
3/14 - STABLE
6/14 - STABLE
9/14 - STABLE
12/14 - STABLE
...Continue Herceptin and daily Tykerb and scans every 4 months
1/16 - STABLE
11/18 - Five level spinal fusion from collapsing vertebrae due to spinal Mets/radiation
12/19 - STABLE
Mom to Audrey (12 yrs) and Hudson (8)

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