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05-09-2013, 02:11 PM
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#21
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Senior Member
Join Date: Apr 2009
Location: La Quinta, Ca
Posts: 253
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Re: One year of TDM1. NED!
I am very happy for you. How many months did it take before they used the word Ned? I have had 11 treatments and it has not been easy. I have a lot of collateral damage issues I am dealing with so I never know exactly what to blame. But I am pretty sure the joint/muscle pain is Katcyla's fault. I have gone to taking a narco first thing in the morning to get going. Have you experienced pain with Katcyla?
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05-09-2013, 06:33 PM
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#22
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: One year of TDM1. NED!
Michka,
Thank you for posting this wonderful news. We all needed it about right now.
I am very very happy for you !
Best!
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05-11-2013, 01:25 AM
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#23
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Senior Member
Join Date: Feb 2007
Location: Paris, France
Posts: 858
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Re: One year of TDM1. NED!
I thank you all for your nice and so encouraging messages! It is so wonderful to have this group to share the good and the bad things on this journey. I have to thank Joe and Christine once more.
CoolBreeze, I posted my SEs on the TDM1 side effects thread but don't get me wrong: I really risked my life when I refused all other chemo and went for the TDM1 trial because like you, at the time, I just knew my body could not take the old chemos. I suffered so much with many treatments. TDM1 has been difficult the first rounds but NOTHING to do with FEC or Taxol or Navelbine for me. In the beginning I had so many tumors dying at the same time I figure my body was reacting to that. Don't forget that during the time I had to wait to get in the trial, a tumor blocked a bile duct and I had to have a stent put in. So I started the trial with my liver being at the limit and I was in a poor state. For me the worst SEs were nausea (I have worse nausea than many on all chemos) chest pain, dyspnea and fatigue. I also have pain sometimes but I can control it very easily with Tramadol and it only lasts a day or 2. One year later I am still very fatigued and have dyspnea but much less than in the beginning. Since they lowered my dosage the pain in the chest dsiappeared. So YES Coolbreeze. Go try it. I just add for you that Herceptin never worked for me before and that I am ER+.
Nancy L, I cannot tell you exactly when I became NED because the Drs were hesitating with my liver. I had resection and RFA so what they took for tumors was in fact scars. I think it took 4 or 5 months. Sometimes you keep very small scars that you cannot rule out without a Pet/scan or a MRI.
I had and still have pains. It comes towards the second week, can be very strong all over my body but I control it fast with Tramadol and it only lasts one day or 2. What are your last scan results? It seems it can be long for some, almost a year and real fast for others to become NED.
Phil, I am so happy Lorraines's CT is good! I follow her through your posts and it helped me so much to go for TDM1. I am now on a 3.0 dose also. There is a long way to have TDM1 announced here in France. I heard that the lab is trying to get Pertuzumab approved first and that they have not even filed for TDM1 approval! It might be 2 years...
I have a question for all who have been on TDM1 for more than a year: I have control scans every 6 weeks. I feel it is too much. I asked to have them every 12 weeks but after saying yes they said no because they just lowered the dose. Any information could help me.
Love to all. Michka
__________________
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex
12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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05-11-2013, 02:01 AM
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#24
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: One year of TDM1. NED!
Thanks for sharing the wonderful news, Michka. I'm so happy for you. This will give so many of our sisters so much needed encouragement!
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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05-11-2013, 08:42 AM
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#25
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: One year of TDM1. NED!
Hey! I'm late to the party but let the celebrating continue . . . That is such awesome news. I remember you posting about the liver and stents. Truly a miraculous recovery. I am so happy for you. Yeah!!!
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes
Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"
Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla
Reconstruction: TRAM flap, partial loss, Revision
The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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05-11-2013, 09:09 AM
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#26
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Senior Member
Join Date: Nov 2010
Posts: 393
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Re: One year of TDM1. NED!
michka , we are so happy for you, Lorraine too had stents in bile duct, kidney. cancer there so small couldn't be seen on scans, now all gone !
Lorraine cut back on scans to every 3 months last yr. that was 2nd yr of tx, about 6 months ned. since reaching one yr ned this past Nov., 2012, she is on a 4 month schedule. tumor mrkers are checked very regularly. she is still on the extension or maintenance study , for those who have finished expanded access or trials. the scan schedule was negotiated betw. our doc and Genentech , based on good , sustained response. 6 weeks seems much too frequent for 0ne yr ned.
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05-11-2013, 06:58 PM
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#27
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: One year of TDM1. NED!
Michka,
I'm so very happy for you. Thank you for giving us the good news.
I just started TDM-1, with just one dose. I don't think I've had any side effects, or at least not much. I like it better than Tykerb.
It turns out I'll be 10 days overdue for my second dose because I'm going on a trip. It's always about balancing, isn't it?
I'm especially heartened by stories of people with a lot of cancer burden who got to NED. I've never had much cancer burden, but haven't spent much time dancing with NED. He keeps running off.
Thanks again for the good news, and best wishes to you.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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05-14-2013, 06:46 AM
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#28
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: One year of TDM1. NED!
I'm so happy for you and your family Michka! Gods blessings to you
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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