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10-18-2009, 10:51 PM
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#21
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: VickieH - trailblazing Pazopanib
Dear Vickie -
I am so glad you posted, as I was about to ring your bell and find out how you are. Naturally I am extremely sorry the last trial drug did not do the job. We have missed your wit and charm here.
Is there ANY way to get into a T-DM1 trial?? I have a friend who is having good results against her skin mets with just three doses so far. I will be posting on that thread. She had become too weak for any other chemos and had been reduced to 1/2 dose on her last round of cytoxin. Her onc had told her he did not know what else to give her and she persisted on her own and got into this trial in Coeur d'Alene, Idaho. They are closing it soon.
I do so wish there was a way for you to get this drug. The Idaho trial is also for Pertuzumab for those who do not show good improvent on the T-DM1 alone. So far my friend has not had the Pertuzumab.
I am right there holding those twigs and branches with you, dear sister. Your faith is strong, as is our faith in you.
__________________
"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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10-18-2009, 11:25 PM
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#22
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: VickieH - trailblazing Pazopanib
Hi Vickie, I am so sorry to hear this last trial wasn't working for you. I'm with Steph on this one...you really might want to check into the TDM1 study and see if it's at all possible to get into it. In fact I was saw Dr. Slamon and he just lights up when talking about this study...he said it's had such great results. Another plus is it wouldn't be so toxic like the other chemo drugs which would be easier on your veins I would think.
My heart really goes out to you...& I want you to know I will be praying that the Gemzar & Cisplatin takes care of those mets for good. Sending you warm healing thoughts & prayers.
Love & hugs!
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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10-19-2009, 12:54 AM
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#23
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Re: VickieH - trailblazing Pazopanib
TDM-1 seems worth pursuing if possible.
Also, could you get Herceptin AND Tykerb to better close Her2 path? Zoledronic acid? Any options in the Articles of interest section here possible? (especially cancer stem cell fighters thread) Provectus has a compassionate use of PV10, used in melanoma as well. I can forward you a file with some other treatment options.
It also occurs to me that you may be able to easily provide a biopsy for one of those tisssue tests to see what would work. ?? (rational therapeutics or the like)
Have you had a biopsy since 1st? ER status could have changed...could be a major factor.
Lastly, my mom's onc has been using a unique sequence of Taxanes combined with Tamoxifen that he has been having some amazing results with in a variety of cancers, not just breast, not just ER+. My mom hasn't had it but is being discussed. It's a rough regimine but might help. Could try to connect the dots on that if you like.
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10-19-2009, 05:11 AM
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#24
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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Re: VickieH - trailblazing Pazopanib
Please don't ever think you are "adding to the toll" We want to hear from you and wonder when we don't. This board is to help you hang on to every branch and patch of grass. And if you decide to let go, we are here for that too. But it sounds like there are still promising weapons for you to try, like TDMI. I've heard it called super herceptin. All the very best.
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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10-19-2009, 07:28 AM
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#25
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Re: VickieH - trailblazing Pazopanib
Vickie Girl, I hurt inside as I read your news. I just knew that you must be having trouble because you were so quiet. I hate those mets that are making your life complicated and painful! Sending you love and hugs, ma
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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10-19-2009, 07:53 AM
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#26
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Senior Member
Join Date: Feb 2007
Location: Paris, France
Posts: 858
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Re: VickieH - trailblazing Pazopanib
Dear Vickie, I am so sorry Pazopanib did not work well. I hope you will have better results with your new combo. Maybe you should start to investigate with your onc the TDM-1 trial as Chelee and Steph suggested. Just to be ready. I send you strength and lots of hugs. Please tell us how you feel whenever you need to. We care. 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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10-19-2009, 09:52 AM
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#27
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: VickieH - trailblazing Pazopanib
Dearest Vickie
My heart is so sorry that this trial did not work for you. I want to second what has already been said about T-DMI trials.It must be worth a try even though I know the effort to pursue this takes a lot of energy and commitment as Chelee is finding.
What about any immunotherapy trial ?
I am praying for the key to stop these mets.
Love Ellie
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10-19-2009, 10:49 AM
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#28
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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Re: VickieH - trailblazing Pazopanib
I am so sorry this trial is not working for you. Please
keep up the good fight and I pray for you daily to
have strength and courage to do this.
patb
__________________
patb
Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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10-19-2009, 10:55 AM
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#29
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Senior Member
Join Date: Feb 2006
Posts: 437
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Re: VickieH - trailblazing Pazopanib
Vicki,
I too am sorry that the trial didn't work out for you. Please keep hanging on to that branch. I am sure there is another option for you.
God Bless and I will keep you in my prayers.
__________________
Linda
Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
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10-19-2009, 03:28 PM
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#30
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: VickieH - trailblazing Pazopanib
I am so sorry to read your news. Please hang in there and keep putting one foot in front of the other.
Speaking of putting one foot in front of the other I thought I might share some information with you that might be helpful.
First of all the University of Washington Tumor Vaccine Group is or was conducting a clinical trial using Imiquimod, an immune response modifier (Aldera) which is normally used for skin cancer with Abraxane for breast cancer skin mets.
The second thing I would like to share is that you might want to consider talking to a good dermatologist for the skin mets. I had tiny skin mets many years ago. I decided that since they were visable I would go talk to my dermatologist about removing them. My dermatologist removed the skin mets with local anethesia while I continued on drug therapy. Attacking the tiny skin mets from two angles was the right thing for me.
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10-19-2009, 06:47 PM
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#31
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: VickieH - trailblazing Pazopanib
Vickie,
You are so very brave to clutch at those patches of grass on that slippery and exhausting slope. I am so sorry the Pazopanib did not do the trick, but I am praying the Gemzar & Cisplatin combo rallies you and beats back that ugly mets!
You will be in my heart and prayers. Your earlier post to Marie was beautiful. Praying for peace for you and yours.
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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10-19-2009, 07:37 PM
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#32
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: VickieH - trailblazing Pazopanib
Vickie,
Hope you are resting well. Thank you for posting your thoughts at this trying time. Please know that we love you and are praying for you.
__________________
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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10-19-2009, 07:47 PM
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#33
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Re: VickieH - trailblazing Pazopanib
Vickie,
I hope that you are resting and that the chemo is doing it's job. You and your family are in my thoughts and prayers.
Love, Hope, Peace, Carolyn
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10-20-2009, 12:24 PM
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#34
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Guest
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Re: VickieH - trailblazing Pazopanib
Vickie,
Adding my prayers for you girl. You have continued to be a source of inspiration to all of us and I cherish your friendship. God loves you and will not leave you. Please let us know how things are going.
Love and healing energy,
Randi
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10-20-2009, 12:44 PM
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#35
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: VickieH - trailblazing Pazopanib
Vickie,
You are in my prayers too.
Amelia
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