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11-06-2012, 12:17 PM
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#1
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Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
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Update on KrisVell - Please Hold Her Up
I am so sorry to share with you all that KrisVell is now on home Hospice care.
It is on this message board that I met her over 2 years ago. We were chatting back and forth; when one day she messaged me with an "Oh My God, I think I live 2 blocks away from you!!". Sure enough, we were not only neighbors, our daughters were casual friends in high school. We remained friends, have had many many cups of tea (and even green juicing parties) together. We went to martini fund raisers and yucked it up many an afternoon. Sadly, just a few short weeks ago she learned that her mets moved into her cerebral spinal fluid. That along with growing necrosis in her brain stem has paralyzed her left side and is slowly creeping over to her right. She is now on home hospice care. What is remarkable about Kris is her peaceful spirit. When I was raging; she was calmly saying "it is what it is". Her husband John is incredibly loving and supportive. Her sister is with her daily and of course her 2 beautiful and accomplished children are home with mom. Please hold kind and peaceful energy up for Kris while you pray and meditate. She will appreciate the benefit of your collective peace and wisdom.
With love and gratitude for your wise and kind hearts,
Kim (from CT)
__________________
2001 - Stage 0, lumpectomy, radiation, tamoxifen
2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.
2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle
2011 - Still Herceptin only and NED
2011, June - STOPPED Herceptin and kicked up my heels!
2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.
2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine
2022 On Herceptin and NED continues - WOOT WOOT!
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11-06-2012, 12:49 PM
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#2
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Re: Update on KrisVell - Please Hold Her Up
Kim, I surely do wish this was different news about Kris, but thank you for letting us know how she is. She has my prayers for a peaceful journey. I'm so glad that she is surrounded with love and support.
__________________
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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11-06-2012, 01:51 PM
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#3
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Update on KrisVell - Please Hold Her Up
I am so sorry to hear about Kris. I hope God gives her comfort and peace. I am glad she is surrounded by loved ones during this time.
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11-06-2012, 02:14 PM
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#4
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Senior Member
Join Date: Feb 2006
Posts: 437
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Re: Update on KrisVell - Please Hold Her Up
Oh I am so sorry to read this, I will keep Kris and her family 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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11-06-2012, 03:07 PM
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#5
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Senior Member
Join Date: Feb 2007
Location: Cordoba, Mexico
Posts: 672
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Re: Update on KrisVell - Please Hold Her Up
I am very sorry to hear about Kris, I will be praying for her and her family. It is so sad when we hear about the bad developments of the illness in our sisters, it always makes me very sad. Hugs to you Kris.
With much love,
Paty
__________________
Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
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11-06-2012, 03:48 PM
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#6
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Senior Member
Join Date: Apr 2012
Location: Melbourne, Australia
Posts: 494
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Re: Update on KrisVell - Please Hold Her Up
Very sad news - loving thoughts from Australia.... 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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11-06-2012, 05:35 PM
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#7
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Update on KrisVell - Please Hold Her Up
Kris has prayers for peace and comfort coming her way from me. A long way across the country, but my wishes are very STRONG for her.
Amazing you are such close neighbors, Kim.
__________________
"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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11-06-2012, 05:49 PM
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#8
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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: Update on KrisVell - Please Hold Her Up
Kim,
Thank you for your sad update. Kris was such a bright and shining personality on our site, so positive. It does not surprise me she is brave and accepting of her situation. Please send her my love and will you let her know we on Her2Support treasure her dearly and wish her Godspeed and peace?
Today I voted and let Brenda know I cast it in her memory. Brenda Hutchinson loved politics and once sent me a photo of her and the governor of her state. This has been a sad year of losses for us here on Her2Support.
__________________
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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11-06-2012, 06:06 PM
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#9
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Re: Update on KrisVell - Please Hold Her Up
Kim,
I have been deeply moved by Kris' journey and her message this past weekend. I'm touched that you are there for her, as you have been such an inspiration to so many, too, especially me.
Thanks for sharing your memories of fun and good times with Kris. She still looks great!
Love
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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11-06-2012, 06:46 PM
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#10
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: Update on KrisVell - Please Hold Her Up
Thanks for the update on Kris.
She has such grace - I will be sending prayers from Canada.
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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11-06-2012, 06:54 PM
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#11
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Update on KrisVell - Please Hold Her Up
Prayers and hugs from Ireland xx
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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11-06-2012, 07:24 PM
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#12
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Senior Member
Join Date: Sep 2011
Location: Mt. Prospect, IL
Posts: 177
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Re: Update on KrisVell - Please Hold Her Up
Send prayers up.
__________________
10/01/10 - Dx at age 44. Found lump after miscarrying & was told it was "probably a clogged milk duct" not so much:
stage II - invasive ductal carcinoma ER/PR+ HER2+
10/01/10 - BRCA test - Negative
11/3/10 -2.5cm tumor removed via lumpectomy, clear margins. sentinal node biopsy - nodes clear!
12/2/10 - port placement
12/2/10 to 3/17/11 - 6 rounds of taxotere, carboplatin & herceptin every 3rd week.
04/20/11 - 6/6/11 - 33 rounds of radiation
4/6/11 to 11/2/11 - 11 additional rounds of herceptin every 3rd week
7/15/11 - port removal
7/5/11 started my 5 year journey on Tamoxifen
9/4/11 -1 yr Chest MRI - CLEAN!!!!
9/5/12 -2 yr Chest MRI - CLEAN!!!!
8/29/12 - Started spotting after being in chemopause 1.5 years. Ultra sound detected 6cm ovary mass & very thick lining. YIKES! Taken off Tamoxifen
9/6/12 - Full abdominal hysterectomy. Pathology report came back clean... thank you baby Jesus!!
9/28/12 - Started Anastrozole
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11-06-2012, 11:21 PM
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#13
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: Update on KrisVell - Please Hold Her Up
Kris, is such an up beat sister. I'm so glad she had you the last 2 years Kim. Having a fellow sister to share time with as we have all learned here. Is so important.
Gods blessings dear Kris. I pray our Lord has you wrapped in his loving, peaceful comfort. You are in my prayers my friend.
Your friend,
Nancy
__________________
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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11-07-2012, 12:11 AM
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#14
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: Update on KrisVell - Please Hold Her Up
Thank you Kim for updating us. Again more sad news. I sent my love to her, her family and friends and wish them strength. I admire her courage and acceptance. She will be remembered and missed by us all.
hugs and love
sarah
__________________
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11-07-2012, 01:50 AM
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#15
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Senior Member
Join Date: Jul 2011
Location: Melbourne, Australia
Posts: 432
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Re: Update on KrisVell - Please Hold Her Up
Very sad news - I did not get to know her well on the boards. I will hold her and her family in my thoughts and prayers.
__________________
Amanda xx
40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11
Wife to my wonderfully supportive husband of 17 years!
22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old
(L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins.
Fec*3, Taxotere and herceptin*2 - stopped due to secondary diagnosis
June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions
Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo
February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again
August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy!
September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing.
January 2013 - herceptin, carboplatin and Perjeta (compassionate access)
April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta
July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.
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11-07-2012, 05:06 AM
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#16
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Update on KrisVell - Please Hold Her Up
Really upset to hear this news.
She is such a lovely person and a fighter.I pray she receives comfort and peace.
Ellie
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11-07-2012, 12:24 PM
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#17
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Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
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Re: Update on KrisVell - Please Hold Her Up
Thank you all for your kind kind words, thoughts, meditations and prayers.
I am printing like mad to drop off at Kris's house on Friday.
XOXO
__________________
2001 - Stage 0, lumpectomy, radiation, tamoxifen
2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.
2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle
2011 - Still Herceptin only and NED
2011, June - STOPPED Herceptin and kicked up my heels!
2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.
2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine
2022 On Herceptin and NED continues - WOOT WOOT!
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11-07-2012, 08:56 PM
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#18
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: Update on KrisVell - Please Hold Her Up
I did not know kris well, but her profile picture is embedded in my mind and brings a smile to my face - although of course nothing compared to hers. So reflective of her beautiful spirit. Very sorry to hear this news, but thanks for posing it Km
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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11-08-2012, 07:48 AM
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#19
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Senior Member
Join Date: Jun 2007
Posts: 216
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Re: Update on KrisVell - Please Hold Her Up
So very sad to hear the news of Kris.
Sending love and prayers to her and her family from me here in England.
Janie
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11-08-2012, 06:52 PM
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#20
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Senior Member
Join Date: Jul 2006
Posts: 869
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Re: Update on KrisVell - Please Hold Her Up
Please extend my love and positive energy to Krisvell, too. So sorry to hear of this news...I remember her posts well. Wish I could have met her, too. Love from Ceesun (Cathy)
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