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11-06-2012, 12:10 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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Tumor Profiling - I have to share with you
Hello Gang,
I am sorry I have not posted in a long while; but for a GOOD reason! I am still pretty stable after 8 years post metastatic dx.
I am writing to share news about what I think is extraordinary pathology testing. I had a small tumor pop up in my lungs when I went on a short Herceptin holiday. My oncologist had it biopsied a couple of weeks ago and sent the tissue samples to Precipio Diagnostics at Yale in New Haven CT.
The report was amazing. They did a complete tumor profile; identified the exact gene mutation I am experiencing in that tumor (PIK3CA G1049S); then identified a promising med that will target that particular type of mutation. They also listed relevant available clinical trials with a link on clinical trials.gov. This is MUCH more info than from a standard lab and of course gives me the HOPE that comes from recommended trials and treatments.
Their web site (if you want to check it out) http://www.precipiodx.com/physicians...profiling.html
Also, when I called them to ask how I can get a bx sample to them; they sent me the FedEx package to mail the Biopsy results in. They consulted with my doc; all in all a great experience!!
I am happy to send a copy of my report if you are interested in seeing how it looks if you PM me.
Love 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, 02:16 PM
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#2
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Senior Member
Join Date: Feb 2006
Posts: 437
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Re: Tumor Profiling - I have to share with you
wow, that's wonderful news. I think we are finally beginning to see a turn toward targeting txs.
__________________
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, 05:28 PM
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#3
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Senior Member
Join Date: Sep 2012
Posts: 111
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Re: Tumor Profiling - I have to share with you
Thank you Kim. I keep a file of options for the future if I need them. This is definitely going in there!
I'm sure that lung met will leave as quickly as it came!!
Love,
Rachael
__________________
7/30/2012 Diagnosed with metastatic breast cancer
8/3/2012 CT scan mets to liver (major!!), lungs, spine, and skin
8/8/2012 Biopsy results: invasive ductal carcinoma
ER+/PR+/HER2+ amplification 4.8 (whatever that means)
8/13/2012 Brain MRI (clear); bone scan verified CT scan
8/14/12 started Taxotere/Carboplatin/Herceptin, 2 rounds (added Neulasta after 9/4 treatment)
9/4/12 CA 15-3: >3000
9/15/12 CA 15-3: 840
9/15/12 started Taxotere/Perjeta/Herceptin, 4 rounds (no Neulasta)
10/29/12 CT scan showed dramatic improvement in all areas - largest liver met 2.5 cm, largest lung met 10 cm
12/17/12 Started Perjeta/Herceptin, 2 rounds
12/17/12 CA 15-3: 17 Yay!!!
1/21/13 CT scan showed improvement - largest liver met 1.9 cm, largest lung met 2 mm
1/29/13 CA 15-3: 12 Started Herceptin only
3/12/13 CA 15-3: still 12 yay!! Back to Perjeta/Herceptin
3/29/13 CT scan more improvement - largest liver met 1.2 cm, some lung mets disappeared!
3/7/14 started Tamoxifen
6/27/13 - 1/2015 CT scan stable
Began a diet of only single ingredient foods and went nearly NED excepts for some tiny lung spots - ask me if you want to know more...
1/2015 - 1/2017 CT scan stable
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11-06-2012, 06:10 PM
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#4
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Re: Tumor Profiling - I have to share with you
Kim,
This is cutting edge. Thanks for sharing your information on the new frontier of fighting this disease. Keep going!
Love, your friend,
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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11-07-2012, 05:14 AM
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#5
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Tumor Profiling - I have to share with you
Hi Kim
I had already sent my pm before I read this post. It is so good to hear that they have been able to so effectively track down the culprit gene and better still that there are good options to zap it. Please keep us informed on what treatment path you go down.
Ellie
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11-07-2012, 05:49 AM
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#6
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Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
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Re: Tumor Profiling - I have to share with you
Ellie,
Yes, it is specific treatment options and HOPE that carries the day for me!
For my tumor's genetic mutation the lab noted a promising drug called Everolimus which is now approved for use with renal carcinoma. They thought it would be the most effective and has already shown promising results. It is comforting to know exactly which drug has the best shot at working when this pesty lung met starts to act up again. In the meantime; Herceptin continues to work well.
The hope that this gives me, made it worth the effort of shouting from the tree tops!
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, 06:54 AM
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#7
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Tumor Profiling - I have to share with you
Love ya Kim!!!
__________________
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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11-07-2012, 12:23 PM
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#8
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Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
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Re: Tumor Profiling - I have to share with you
Becky! Such an Angel! So GOOD to see your beautiful picture, hear a chirp and see by your signature that you seem to be A-OK!
Wish we were next door neighbors!!
__________________
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, 08:54 PM
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#9
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: Tumor Profiling - I have to share with you
Kim, very interesting, and as you say, HOPE filled post.
Thanks
__________________
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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11-07-2012, 11:02 PM
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#10
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Tumor Profiling - I have to share with you
As usual, Kim, you go right to the top, without wasting time on the way!
Evirolimus is also called Afinitor, and has been used by some of the members here in the early trials last year. You could search by Afinitor as well and see what the other gals had to say about it.
This was one of the "darlings" of the San Antonio Breast Cancer Symposium last year. It got approval last July by the FDA to use with a homorne suppressor (I think), and some trials are ongoing for other stages/uses.
Good drug to have in your "bank account."
__________________
"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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11-08-2012, 04:37 AM
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#11
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Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
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Re: Tumor Profiling - I have to share with you
Hey StephN! As always you have words of wisdom - thank you for chirping! I didn't know its trade name is Afinitor - and Afinitor I am familiar with. I am comforted to know it is already approved for use for some other cancers; so when it is my time to change therapies my doctor won't be WASTING time on tykerb, T-dm1 trials, etc; he knows that my tumor will respond to this everolimus or Afinitor. The strides they are making today are incredible - gives me so much hope for my daughters -
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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11-08-2012, 04:38 AM
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#12
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Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
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Re: Tumor Profiling - I have to share with you
And StephN - SO HAPPY to see you are STILL NED - EVEN if it is on a wing and a prayer!!!
__________________
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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11-08-2012, 06:21 AM
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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: Tumor Profiling - I have to share with you
Kim, Outstanding! What awesome hope for all of us some day! Thank you so much for the update. How absolutely wonderful for you. Gods blessings to you and your family. Peace my 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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11-08-2012, 08:04 PM
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#14
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Senior Member
Join Date: Apr 2012
Location: Ontario, Canada
Posts: 62
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Re: Tumor Profiling - I have to share with you
Dear mamacze,
Thank you for emailing me the info!
__________________
Dx Nov 2010 at age 65 - 3.5 cm invasive ductal, 8 of 15 nodes. ER-,PR-, HER+++. Lumpectomy, chemo, 6 weeks rads, 52 weeks herceptin finished April 2012.
CAT,PET, bone scan, ultrasound and mammogram in Spring 2012 - NED.
Cherishing every day, but realistically "watching my back" (or should I say "front"?
Eating foods thought to fight cancer, exercising every other day,using my garden as my mecca of peace, and loving my supportive husband more than ever.
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11-09-2012, 02:02 AM
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#15
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: Tumor Profiling - I have to share with you
Kim,
This is exciting news and I'm sending all the love and positive energy to you in this new treatment. You are a pioneer, this is very exciting. Hopefully this means we finally "getting there"
hugs and love
health and happiness
sarah
__________________
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11-09-2012, 06:07 AM
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#16
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Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
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Re: Tumor Profiling - I have to share with you
Evergreen - you are welcome, I hope the info is helpful!
And Sarah - oh my gosh, I have to log in more often. It is so nice to hear from you! Yes, it is exciting news; I feel like we are turning the corner with new diagnostic tools and genetic profiling.
How are you doing? I think of you often and just kick myself for not logging in more often.
xxoxo
__________________
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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11-09-2012, 10:57 AM
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#17
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Senior Member
Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
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Re: Tumor Profiling - I have to share with you
Hi Kim!
Wow that certainly is amazing to get that much info on your tumor. You are a pioneer for sure!
Since I'm not up to speed on lung tumors, can you share how the biopsy was taken? Was this an out patient procedure?
Like you, my Herceptin holiday didn't last as long as I'd hoped, so this is timely info for me as well.
Hugs to you Sister!
Kim
__________________
Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.
5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.
9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .
11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!
7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!
June -Dec 2004 UW Vaccine Trial.
7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.
Brain MRI @3 months NED!
2006-2011 brain/body still NED
8/04/11 Taking Herceptin break, will monitor with tumor markers.
6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.
7/23/12 CA15-3 now 49.3
Her2 Serum 26.8
8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49
11/7/12 Add weekly Taxotere for 4 cycles
2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.
November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!
Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara
Jan 2016 Begin Kadcyla
March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla
November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
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11-09-2012, 01:59 PM
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#18
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: Tumor Profiling - I have to share with you
Hi Kim,
It was nice to see a post from you. I'm doing well, thank you.
Last winter I had serious breathing problems and they discovered I'd had a heart attack - it was news to me!! I just had pain in my chest when I went out in the cold to walk my dog in the morning!!! Anyway an artery had closed up due to the radiation I had for BC, so I had an angioplasty and a stent put in. so now I'm on pills for that!!! I also have fibrosis in one lung also because of the radiation. But all of that is just easy stuff. I watched the angioplasty - it was fascinating. I had to stifle a laugh when the doc said "merde" (shit) in the middle of the op! Not something you like to hear when something's being pushed up a vein from your groin!!! it was because the scanner slammed into the bed and he needed it to move it to the other side to see so then they pulled it around. He was thrilled when the vein burst open - apparently when a vein is blocked 100% it's not a sure thing that they can open it!!! something he only divulged to me the night before the op!!! so I took 2 mild sleeping pills that night - one the nurse gave me and one my roommate had squirreled away!
I just got back from 3 weeks in China which was very interesting.
Keep us posted on what's going on with you. It all sounds very well planned. Hope this new treatment is easy to take, get well and come and visit me!
hugs and love sarah
__________________
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11-09-2012, 02:53 PM
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#19
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Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
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Re: Tumor Profiling - I have to share with you
Oh Kim, I am sick at heart that you too had a set back after your Herceptin holiday. I think deep in the recesses of our minds, there is a tiny whisper of hope that maybe we are cured and don't need our Vitamin H after all; but sadly, that is not the case. Where did your cancer recur? Please don't tell me your brain...:>(
Yes the procedure was same day and in performed in radiology. The interventional radiologist simply numbed me up, slid the tiniest of wires into my lungs, scraped a few samples of the tumor then sent it to Precipio Diagnostics in the packaging that Precipio provided to me.
(You can check them out at http://www.precipiodx.com/contact.html) I asked my oncologist to have the biopsy sent there, instead of the in hospital lab. I was very interested to see exactly what my genetic mutation was and to know what treatments are effective with it, and am amazed at the report. I will get my oncologists opinion in 2 weeks (delayed because of hurricane). Kim, please keep me posted on what you decide to do and what treatments you go on. Our histories are so similar.
Sarah - you had a HEART ATTACK??!!!?! Good Grief!! Cancer isn't enough?!? Thank God alls well that ended well! And how wonderful you had what I hope was a restful and fun 3 weeks in China!
Wish we all were neighbors!
xoxo Love 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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11-09-2012, 11:42 PM
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#20
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Re: Tumor Profiling - I have to share with you
Kim,
Very exciting! Please don't stay away too long again.
Best Wishes,
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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