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03-25-2012, 08:40 PM
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#1
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Member
Join Date: Dec 2010
Location: South Jersey USA
Posts: 10
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Enrolled in T-dm1 Teresa trial
In Jan, I became very sick unable to keep food down. In Feb, it was confirmed mets to my stomach.
Best option was to try for Terrsa trial 2/3 get tdm1 1/3 get physicians choice. The trial just started enrolling and not all of the 175 sites are open. I had to wait four weeks to get on the trial during which I ended up hospitalized almost two weeks with complications. This will be my seventh chemo regime.
I got dced from hospital Wed and went to start trial on Thursday. Don't you know I got randomized to non t-dm1 arm. My oncologist is really upset. Said I can't catch a break over last 9 years. It was my best shot. I had seven years stability herceptin, tykerb did nothing.
I was frustrated bc I could of started RX weeks ago if I knew it would of been physicians choice. There is no crossover opportunity so if I progress they will not allow you to have tdm1. I was also told bc trial is brand new there is essentially zero chance of expanded access reopening up.
I didn't qualify for eap before it closed bc I hadn't failed the tykerb then. I lost 30 pounds in two months. Now have pleural effusion.
I did a researcher marketing study when they thought tdm1 was going to be approved in 2010.
I knew there was a chance I would not get drug. 10 years ago I did a study when first dxed trying to get Herceptin but was also randomized to 1/3 that did not get Herceptin. But that was at end of study and they ended up opening it up to everyone.
I feel like the FDA has signed my death certificate.
Even onc running the trial she said its had problems bc of Avastin. Yet Avastin is still available. I have friends on it but I have no chance at getting the drug that could save my life. Help me see my 11 to grow up, graduate 6 grade, start middle school.
I thought I was ok with just getting Gemzar but reading all the success stories of tdm1 makes me so frustrated for myself.
Kelly
__________________
10/01 dx stage III breast CA,
10/01-8/02 mastectomy, chemo, XRT
10/02 total hysterectomy
10/02 dx with mets to ovaries
10/02-10/09 Herceptin, cancer NED or stable
11/09 dx mets for 3cm medisternal mass,
start Xeloda and Herceptin
07/10 dx with mets to adrenal gland and suspicious nodules in pleural stay on Xeloda and watch
11/10 more progression
12/10 start Abraxne Herceptin once week 3 weeks one week off.
10/6/11 PET showed adrenal is very active and new mets in internal mammary
11/1/11 Start tykerb and Aromasin
2/2012 endo dx stomachmets.
3/2012 randomized to non tdm1 arm of Teresa trial.
Started Gemzar
7/27/2012 progression but too small to switch
9/10/2012 now new lymphnode b/w stomach and liver off Gemzar Still no TDM1 crossover
10/3/2012. started perjeta, herceptin, taxotere
12/2012 losing weight from constant big D, scans are stable
1/3/2013 start TDM-1 xover for Teresa trial.
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03-25-2012, 09:30 PM
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#2
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Enrolled in T-dm1 Teresa trial
Kelly,
I'm sorry for what you've been through. Hopefully T-DM1 will get approved soon.
Below is an abstract about Gemzar. It looks like a good treatment option:
Cancer Chemother Pharmacol. 2012 Feb 17. [Epub ahead of print]
A multicenter phase II trial of docetaxel plus gemcitabine as salvage treatment in anthracycline- and taxane-pretreated patients with metastatic breast cancer.
Karachaliou N, Kouroussis C, Papakotoulas P, Kalbakis K, Tryfonidis K, Vardakis N, Poppis E, Georgoulias V, Mavroudis D.
Source
Hellenic Oncology Research Group (HORG), 55 Lomvardou str, 11470, Athens, Greece.
Abstract
OBJECTIVE:
To evaluate the docetaxel-gemcitabine (DG) combination administered every 2 weeks as salvage therapy in anthracycline- and taxane-pretreated patients with metastatic breast cancer (MBC).
PATIENTS AND TREATMENT:
Thirty women with MBC who had disease progression after chemotherapy with anthracyclines, or anthracyclines and taxanes were treated with docetaxel 50 mg/m² and gemcitabine 1,500 mg/m² on days 1 and 14 in cycles of 28 days. All patients had received prior anthracyclines, and fourteen (46.6%) had also received prior taxanes. All patients were evaluable for toxicity and 24 for response to treatment.
RESULTS:
Complete response occurred in four (13.3%) patients and partial response in 10 (33.3%) for an overall response rate of 46.7% (95% CI 28.8-64.5). Seven patients (23.3%) had stable disease and nine (30%) progressive disease. Of the 14 patients previously treated with both anthracyclines and taxanes, seven (50%) responded. The median duration of response was 4.8 months (range 1.9-15.3), the median time to disease progression 6.6 months (range 0.5-16.9) and the median overall survival 16.8 months (range 1.3-53.2). There was no treatment-related toxic death. Neutropenia was the only grade 4 toxicity occurring in three (10%) patients. None of them developed neutropenic fever. Grade 3 thrombocytopenia occurred in two (6.7%) patients. Non-hematological toxicities were manageable.
CONCLUSION:
The DG combination administered biweekly is very well tolerated and effective in anthracycline- and taxane-pretreated patients with MBC. A previous treatment with taxanes does not preclude a good clinical response to this regimen.
__________________
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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03-26-2012, 06:57 AM
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#3
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Senior Member
Join Date: Jul 2008
Posts: 186
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Re: Enrolled in T-dm1 Teresa trial
Being enrolled in arm of th3resa trial that wasn't your "physician's choice", would your oncologist be willing to work with Genentech and FDA to see if drug, for which approval is expected to be applied based on Emilia's PFS data by mid-year, could be made available for time being as "compassionate use"?
http://www.fda.gov/ForConsumers/ByAu.../ucm176098.htm |
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03-26-2012, 12:12 PM
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#4
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Enrolled in T-dm1 Teresa trial
I am so sorry. I know this must be very frustrating for you.
We are all keeping our fingers crossed for FDA approval of T DM1.
There is another drug called Petuzamab that Genetech applied to the FDA for approval. A decision is expected by June, 2012. Ask your doctor to check on that one. Genetech's website is www.gene.com Check for press releases from time to time.
You can also go to www.clinicaltrials.gov
and do a search on breast cancer trials in your area. You might just find something else that may be promising.
Ask your doctor if you can use Gemzar with Herceptin. That might give you extra protection.
I know it is hard, but try to stay positive and keep putting one foot in front of the other.
Take good care of yourself. |
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03-26-2012, 04:41 PM
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#5
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Re: Enrolled in T-dm1 Teresa trial
Cross your fingers for approval on JUNE 8TH. JUNE 8TH. Tweet tweet!
Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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03-26-2012, 05:16 PM
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#6
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Re: Enrolled in T-dm1 Teresa trial
Hi Kelly, I am so sorry to hear. you have been through a hard time and some bad luck. This lottery is so inhumane and I still have to see what I will be randomised in myself. It is so hard to feel like we are a number/data and that our chance at getting a drug that may work is not as important than their blimmin data, so wrong.
In the meantime I hope that the phycisian's choice turns out to be the right one for you. Indeed Gemzar can work well for some.
Sending you good vives
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
Last edited by fullofbeans; 03-26-2012 at 05:19 PM..
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03-26-2012, 07:37 PM
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#7
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Senior Member
Join Date: Jul 2010
Location: South Jersey
Posts: 516
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Re: Enrolled in T-dm1 Teresa trial
Hi, Kelly. I'm sorry to hear this news. 10 years fighting mets! Wow! And yet, there are still so many other treatments you haven't tried yet, and more new ones coming down the road. I pray everything works out for you. So what did your oncologist decide to treat you with on this trial? Keep us posted on you.
I live in South Jersey - in Atlantic County. I go to UPenn for treatment.
__________________
...but he said to me, “My grace is sufficient for you, for power is made perfect in weakness.” I will rather boast most gladly of my weaknesses, in order that the power of Christ may dwell with me. (2 Corinthians 12:9)
Penny
July 2010 IDC grade 3 stage 3 er-/pr-/her2+++, BRCA2
Skin mets 11/10
1/12/11 Surgery path - complete response
Rads 2/11-4/11
Liver mets 11/11 now stage IV
Xeloda & Tykerb 12/11
Allergic reaction to Tykerb 12/11
Xeloda only 12/11
Added herceptin January 2012
Progression February 2012.
Started Veliparib (parp inhibitor) trial 3/5/12.
4/30/12 Liver met shrunk in half! Praise Jesus!
6/18/12 another 25% shrinkage, down to @3x3. Thank you, God!
8/8/12 Brain MRI - clear! Praise to You, Lord Jesus Christ!
8/27/12 Thank You, God - another 20% decrease in liver met! Now @ 3.2x1.9.
10/5/12 stable-ish
11/21/12 allergic reaction to carboplatin
12/10/12 stable & progression
12/31/12 liver ablation
2/6/13 ablation successful but new tiny mets in liver. May or not be cancer.
Another ablation scheduled 2/28/13. Cancelled.
2/20/13 started taxotere & herceptin. Pretty toxic. Oncologist says start tdm1 4/3/13. From her lips to God's ears. Praying for no allergic reactions/adverse side effects.
3/28/13 increase in liver mets - number & size
4/3/13 started TDM1
6/25/13 Praise God! Scan shows only one viable lesion and it's smaller.
10/8/13 MRI shows 1 large and two small tumors.
10/11/13 Ablation of tumors. It's in God's Hands.
10/23/13 Jesus and TDM1
12/19/13 Started trial of palbociclib & herceptin after scan showed growth of liver tumor and a questionable spot on rib.
2/6/14 CT scan - previous suspicious spot on rib probably damage from radiation - Praise God! MRI - over 200% growth in cancer in liver.
2/19/14 started Navelbine, Perjeta, & Herceptin combo.
5/2-5/4/14 hospitalized with very high liver function numbers, plus skin and eyes are yellow, plus urine is orange. Feel ok, so doctor not sure if liver failing due to cancer, chemo, or infection. Hospital gets numbers to go down and sends me home. MRI done in hospital reveals cancer shrinking - praise God!
5/6/14 - 5/8/14 hospitalized with no white blood cell count. Released when they go back up, @ 6 days after doctor gave me a neulasta shot.
5/16/14 - informed blood cultures done in hospital are back and that I contracted hepatitis e. Have to take ribavirin (anti-hep med) until liver function numbers are back to "normal" before re-starting chemo. Will probably go on veliparib and temodar this time.
5/26/14 - my birthday - GI doctor informed me that the hepatitis e was completely gone - I didn't even need the anti-viral meds! This is a miracle from God!
5/28/14 - started veliparib and temodar (compassionate use)
8/18/14 MRI shows 90% growth in liver tumors
8/20/14 start Perjeta, Herceptin, & Navelbine. Thanking & giving Glory to God for each moment.
9/22/14 - 9/24/14 Hospitalized with 102.2 fever and neutropenia
11/13/14 ER for high fever and fast heart rate. Got both down with IV antibiotic and fluids. Sent home same night. Thank You, Lord!
12/2/14 MRI shows progression in liver. Grateful to God that I still feel good.
12/11/14 Simulated SIR-spheres. Successful. Real thing (1st lobe) scheduled for the 23rd. Also starting Xeloda on 22nd for 2 weeks because it's synergistic with the spheres.
12/23/14 SIR-spheres in left lobe of liver. On Xeloda 12/22/14 - 1/4/15.
1/7/15 Receiving Perjeta & Herceptin while awaiting next course of action.
2/9/15 SIR-spheres in right lobe of liver. On Xeloda for 2 weeks (started 2/8). Still on Perjeta & Herceptin. Don't know what's next for me. :-)
3/25/15 Final read on MRI report - there are new and multiple lesions in both lobes of liver. Sigh. Praise God I've made it this far!
4/1/15 Started Gemzar & Herceptin. 1st week G&H, 2nd week G only, 3rd week off. Thank You, Lord, for this option.
4/15/15 Labcorp - liver enzymes in 200's. Appointment 4/22 with oncologist to discuss. Also, "radiation recall" in previously treated area? Very itchy. Need to discuss.
4/22/15 Enzymes came down. Received reduced dose of Gemzar only. No herceptin. Will get labs at lapcorp next two weeks since taking break for vacation purposes. Treat radiation area.
5/9/15 ER for severe abdominal pain. Constipation. Sent home with meds and advice to follow up with oncologist regarding jaundice and bilirubin.
5/11/15 Hospitalized for rising bilirubin and jaundice. CT scan reveals larger and more constricting tumors in liver.
5/13/15 Met with my oncologist. Bilirubin came down. If still down by Monday, I'll get chemo. If not, than I guess I'll see you all in Heaven. Praise God. Please pray, pray, pray.
5/18/15 Bilirubin jumped up. Trying lowered dose of Ixempra, with Herceptin. Oncologist is surprised that I'm functioning so well, given the high bilirubin. I have anywhere from 2 weeks - 2 months to live.
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03-27-2012, 04:26 AM
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#8
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Enrolled in T-dm1 Teresa trial
If it is physician's choice, is the doctor also giving Herceptin with the Gemzar. I would demand the Herceptin witht the Gemzar and not just the Gemzar alone.
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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03-27-2012, 04:44 AM
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#9
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: Enrolled in T-dm1 Teresa trial
Kelly,
I'm so sorry for your latest, frustrating disappointment. I agree with FOB, if I never hear the word "data" again, it will still be two days too soon for me!!!
This whole lottery approach to treatment is so wrong!
Like Karen, I'm hoping, praying, and contacting all my elected representatives about getting TDM1 approved for all of us ASAP!
You've been so strong for so long...hang in there. I'm sending hugs and prayers your way.
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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03-27-2012, 05:32 AM
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#10
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: Enrolled in T-dm1 Teresa trial
Kelly, I am so sorry. I'm hoping and praying your answers will come soon. Please know prayers are going out for you and your family.
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03-27-2012, 12:48 PM
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#11
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Senior Member
Join Date: Nov 2010
Posts: 393
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Re: Enrolled in T-dm1 Teresa trial
My wife got her best response prior to tdm-1 out of herceptin/gemzar. 18 months of stability. That was early in her fight, but she was Stage IV from the start. The idea is to keep surprising the cancer w/ something new.
If you try another choice, think about compassionate use as the next step, if needed. It will be about a yr until t dm-1 approval, maybe a little less if we keep the pressure on This FDA, and This Pres., in an election yr. Really, when you look at t dm-1 and avastin , His Administration has been a Disaster for Stage IV BC. Sad. And Genetech top execs making abusiness decison to deny comp. use. Shameful. Sooner or later , their actions will get the negative Public PR that they deserve. Someone will be the first , hopefully , to get comp. use. You may have to push your onc to talk w/ Gen. docs. A lot of oncs are reluctant to get into it, they know its crooked. The FDA washes its hands of it, wouldnt even talk to us . Said " Talk to your doc, have them talk w/ Genentech. Then they talk to us . We dont need ( or want ) to talk w/ you. " Un-believable. And they re-write the accelerated approval law, ignoring the people ! That single pt. /comp use system is crooked, will need changing. Too much power w. private business in that equation. They are selling life-saving meds, not computers ! In that area we need an FDA that works for Us !
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03-27-2012, 02:05 PM
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#12
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Member
Join Date: Mar 2012
Posts: 5
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Re: Enrolled in T-dm1 Teresa trial
Praying for you, Shaysmom. Don't give up the fight.
__________________
Dx: April 2008 HER2+ - Age 35
Bilateral Mast: April 2008
34 Lymph nodes removed 19+
3mos chemo> Carboplatin, Taxotere, Avastin & Neulasta
30 Rounds of radiation
Recurrence March 2010 - Fractured spine with disease; ovaries removed in May
6mos more chemo> Navelbine > more radiation which led to a weeks worth of hospitalization due to radiation enteritis
6 mos Tykerb and Fasoldex
Being sent to Indianapolis for clinical TDM-1
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06-19-2012, 08:57 PM
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#13
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Member
Join Date: Dec 2010
Location: South Jersey USA
Posts: 10
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Re: Enrolled in T-dm1 Teresa trial
Sorry for not getting back, I had a rough few months and wasnt able to get up to our main computer just online with my phone and couldnt get on here.
The Gemzar is keeping me stable after 4 cycles and two sets of scans. Cancer ran wild while I was off treatmnet for two months so its a challenge to get ahead of it but stability is good!!!
But my oncologist spoke directly to the person running the TERESA trial and they are going to open up crossover, meaning "if" or when the Gemzar stops working they will allow me to have TDM1. They aren't opening up cross over in all their trial but decided to in this one b/c we are in he "salvage" setting with few options left for Her2.
Add that to PERJETA™ (pertuzumab) being approved. Even though it said as first line, My oncologist said they can use it off label. The U of Penn will have it end of summer she said.
So from my hopeless post in March, I have added two new treatments to my arsenal. Gemzar is keeping cancer stable and has given me back my quality of life. I am eating again, off IV nutrition and my weight is stable.
I got to see my son graduate 6th grade. Which since being here for high school graduation seems like a long shot, was very meaningful for me. He turns 12 in July and I will celebrate my 5th wedding Anniversary in August and would love to take a mini vacation to shore or Lancaster this summer. So I am hoping to stay stable for awhile.
I feel lucky and blessed to be here. I was considering hospice in March.
Thank you so much for your support and help.
__________________
10/01 dx stage III breast CA,
10/01-8/02 mastectomy, chemo, XRT
10/02 total hysterectomy
10/02 dx with mets to ovaries
10/02-10/09 Herceptin, cancer NED or stable
11/09 dx mets for 3cm medisternal mass,
start Xeloda and Herceptin
07/10 dx with mets to adrenal gland and suspicious nodules in pleural stay on Xeloda and watch
11/10 more progression
12/10 start Abraxne Herceptin once week 3 weeks one week off.
10/6/11 PET showed adrenal is very active and new mets in internal mammary
11/1/11 Start tykerb and Aromasin
2/2012 endo dx stomachmets.
3/2012 randomized to non tdm1 arm of Teresa trial.
Started Gemzar
7/27/2012 progression but too small to switch
9/10/2012 now new lymphnode b/w stomach and liver off Gemzar Still no TDM1 crossover
10/3/2012. started perjeta, herceptin, taxotere
12/2012 losing weight from constant big D, scans are stable
1/3/2013 start TDM-1 xover for Teresa trial.
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06-19-2012, 11:35 PM
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#14
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Senior Member
Join Date: Dec 2011
Posts: 585
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Re: Enrolled in T-dm1 Teresa trial
Thank God!!!! I am soooo happy to hear you are feeling better and things are stable. What a relief...((hugs)) to you. Please keep us updated, and know that I am sending you prayers and positive energy every day, as are many others.
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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06-20-2012, 03:03 AM
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#15
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Enrolled in T-dm1 Teresa trial
So pleased to hear this good news.sending you lots of good vibes from across the pond.
Ellie
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06-20-2012, 05:01 AM
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#16
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: Enrolled in T-dm1 Teresa trial
How wonderful for you! Hope springs eternal! I'm so glad your able to fully enjoy your son. He has an exceptional Mother! You and your family are in my prayers.
__________________
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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06-20-2012, 05:06 AM
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#17
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Senior Member
Join Date: Mar 2012
Posts: 61
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Re: Enrolled in T-dm1 Teresa trial
I'm so happy you checked in - wonderful news! Congrats to your little guy and I looked forward to seeing pictures of you with him on his next graduation!
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06-20-2012, 12:24 PM
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#18
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Enrolled in T-dm1 Teresa trial
Hello Shaysmom -
Very glad to hear that you have overcome a bad moment in time, and are looking to the future. You have a great doctor who is stepping up to the plate for you big time, and prayers have been answered.
All the best for a nice summer!
__________________
"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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06-20-2012, 01:26 PM
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#19
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Senior Member
Join Date: May 2011
Posts: 137
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Re: Enrolled in T-dm1 Teresa trial
I was holding my breath all the way through just hoping you'd caught a break! My doctor always encourages me with "stable is good." So glad you had that goal of 6th grade graduation and you saw it through! Your story is very inspiring- thanks for sharing!
__________________
3-16-11 dx IDC 4.4 cm tumor, right breast,HER-2 neu 3+++, Stage III
3-25-11 PET scan shows 3 mets to liver and 1 to spine, Stage IV
4-12-11 start clinical trial of TDM1 infusion 1x every 3 weeks.
6-14-11 CT scan after 3 cycles shows NO liver spots, reduced spinal met from 18mm to 13mm and right breast mass from 4.4 to 4.2 cm.
8-12-11 Mastectomy rt. breast.
10-11 scans reflect stable cancer
12-11 MRI reveals area of concern in brain, CT scan reveals 3mm spot on lung. Watch and wait and rescan in a few weeks. Round 13 TDM1 complete.
2-21-12 Scans reveal progression in lungs with 4 new small mets. Officially off tdm1. Start halaven and radiation for single brain met, 1 spot in spine.
3-13 stereotactic radiosurgery for single brain met.
5-31-12 Halaven stopped due to low blood counts. Start tamoxifen and cont. Herceptin 1x3 weeks.
7-11-12- brain mri shows shrinking brain met and no new lesions. Cont. Herceptin and Tamoxifen
10-2-12 Stable tumor markers. Continue Herceptin and Tamoxifen
4-9-13 progression in lymph node under arm and new lung spots. Stop Tamoxifen. Add Xeloda to Herceptin.
6-10-13 Stereotactic radiosurgery to two new brain mets. Stop Xeloda due to lung mets progression. begin Tykerb 7-2-13.
10-29-13 Begin radiation to my lungs and one lymph node under my arm. Stop Tykerb until completion and then recommence.
1-31-14 Progression in lungs. Oophorectomy performed.
2-18-14 Begin Arimidex and continue Herceptin
7-7-15 progression with spots on colon, in pelvic region, and in lungs. Begin Taxotere, Perjeta and Herceptin.
11-15 Switch to weekly Taxol, and continue with Perjeta and Herceptin.
12-23-16 PET scan shows Complete Response with no new spots. Continue on with TPH indefinitely.
3-16-16 Still no evidence of disease, break from Taxol. Continue on with Perjeta and Herceptin.
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06-20-2012, 01:49 PM
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#20
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: Enrolled in T-dm1 Teresa trial
This is the most wonderful news. Just keep moving forward now and all the best.
karen
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