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Old 02-25-2013, 03:27 PM   #1
jml
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Kadcyla/TDM1 CELEBRATION @ Genentech:)

RING THE BELL TO CELEBRATE!

I just received a phone call from my sister, a physician/scientist bio onc recruiter @Genentech
as they were ringing a bell company wide (@2pm pst) to celebrate the long awaited arrival & approval of TDM1 aka Kadcyla!
She called me earlier today to tell me to be available so she could share with me the sounds of the bell ringing, and lots of hoots & hollers & whooops mixed in
It was so exciting & I was whooping along with them!
And it was such a wonderful feeling to know that they celebrate this success as much as we do.
Then someone gave a speech, which I couldn't hear very well, so I let her go to listen & enjoy.

I <3 Genentech!

Jml
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Old 02-25-2013, 04:11 PM   #2
chrisy
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Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)

I also love genentech. And as I told a tdm1 team during a visit there a few years ago: now get back to work!

People will think what they will about big pharma and biotech, but the ont thing that has always impressed me about genentech people (and I've met MANY) is they all have a passion that goes further... They have a personal agenda which is to defeat cancer, or whatever they are working on
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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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Old 02-25-2013, 04:52 PM   #3
SoCalGal
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Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)

already can't remember the name...
CyKadia?
I mean---dude--they spent the dough on consumer testing but forgot to focus a focus group on the name? RUNdmc, TDM1, LMNOP, --Kadcyla--? Is it the TomKat, the BeyonJ, the Bennifer, the J-Lo of the down lo and I'm missing the point?
I know, a rose by any other name....
Really happy they are ringing the bell! Super happy it's approved, no matter that I'm disappointed in the name!
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.

Last edited by SoCalGal; 02-25-2013 at 04:52 PM.. Reason: grammer HA.
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Old 02-25-2013, 05:22 PM   #4
KDR
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Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)

I also love the people at Genentech. Mark Slikowski, who formulated many of the drugs we are on now, is an amazing man who truly cares about the end user: us. I listened to a speech given by a VP recently and he remarked, with held-back emotion in his voice, about how Mark said, "This is going to be great for patients," when they recognized the efficacy of Perjeta. I knew I was in "good people" company when I witnessed that.

Thanks, Jessica, for sharing your experience of the long-awaited approval. They should have your picture hanging in the lobby of the main building.

Love Karen
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Old 02-25-2013, 05:54 PM   #5
Bunty
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Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)

Such a lovely post Jessica! Thanks for sharing.
Cheers Marie
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dx Dec 2000 dcis 2.5cm clear sentinel node, ER/PR- Her-2+
lumpectomy, 6 cycles AC, 6 weeks rads
October 2007 three x 2.5cm lung mets. 8 months Taxol, started Herceptin and continue. Significant reduction in lung mets.
June 2011 3cm x 4cm liver tumour. Started Abraxane and continue with Herceptin.
November 2011. Finished with Abraxane, continue with just Herceptin. Liver tumour now reduced to 15mm x 12mm. Lung tumour now 10mm x 0.5mm
February 2012. Scans show everything stable, and brain scan clear.
July 2012. PET/CT scans show I'm in remission - no active cancer!
]Dec CT brain cllear, lungs stable, liver tumour has increased to 20mm. PET scans showed active liver met and active lung thinglet, and possible bone met.
Jan 2013 recommence Abraxane, continue with Herceptin.
June 2013 finish Cycle 6 Abraxane, continue with Herceptin. 30% reduction in liver tumour, everything stable.
December 2013. CA15-3 on rise.
February 2014. PET and CT scans show single liver tumour has increased to 35mm. No other activity.
March 2014. Planned for SBRT for liver met, but couldn't have treatment as tumour too close to bowel. Continue Herceptin.
April 2014. Surgeon advises that I am a good candidate for liver resection, so will have operation early May (after camping holiday). Tumour now 44mm x 29mm.
May 7, 2014. Two liver tumours surgically removed. Third of liver removed, and gall bladder. Am I NED?May 2014. Pathology of tumour shows it's now ER+ (95% staining).
June 2014. CA15-3 has decreased to 18 from a pre-surgery reading of 59!
June 2014. Started Femara, continue with Herceptin.
July 2014. Stop Femara due to severe Osteoporosis. Commence Tamoxifen, continue Herceptin. Waiting to hear if I can have Aclasta infusion.
August 2014. CA15-3 has decreased further to 12 - YAY!
October 2014. Aclasta infusion for Osteoporosis. November 2014, CA15-3 decreased to 11. Scans of liver all clear, something new showing up on lung, but just watching at the moment.
November 2015. Started SBRT on solitary lung met.
November 2015. Bone density scan showed very good improvement so back on Femara - yay!
December 2016. 6 treatments of SBRT radiation on lung. Seems to have had some effect.
June 2016. CA15-3 still stable and low at 9.
June 2016. Started subcutaneous Herceptin replacing infusion.
Jan 2017. LVEF dropped to 46%. Stopped Herceptin.
Feb 2017. Started ACE Inhibitor and BETA Blocker. Still off Herceptin.
Aug 2017. Two new mets - Portacaval lymph node and mediastinal lymph node.
Aug 2017. Blood tests show extremely elevated liver enzyme levels. Many tests to investigate.
Sept 2017. Portacaval lymph node blocking liver bile duct causing liver enzyme and Bilirubin problems.
Oct 2017. 8cm stent inserted into liver bile duct. Procedure caused pancreatitis, and hospitalised for 3 days. Liver enzymes improving rapidly.
Nov 2017. Commenced 4 weeks of radiation on Portacaval lymph node. 5 week break before chemo.
Jan 2018. CT scan. 11 new small liver mets, and new superclavical lymph node med.
Jan 2018. Start Kadcyla. CA15-3 426.
Apr 2018. First scans since starting Kadcyla. All tumours reducing. CA15-3 dropped to 30 from 426.
Dec 2019. Still on Kadcyla, but two small brain mets have been treated in the past month with SRS. CA15-3 stable for 12 months at 11.
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Old 02-25-2013, 06:26 PM   #6
chrisy
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Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)

Karen I've met Mark and he not only was part of Perjeta, bu t worked on herceptin and tdm1. A wonderful man with endless passion and determination.

Flori, Sonali from genentech called me with the news Friday. I had the same reaction to the name! She said they wanted to include "ADC" as it is the first antibody-drug conjugate. The rest on the name was to make it something that could be pronounced,,if not easily remembered!
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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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Old 02-25-2013, 07:27 PM   #7
KDR
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Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)

Yes, Chrisy, that is correct. He is often overshadowed by Dr. Slamon, unfortunately. But last year, he won Most Distinguished Scientist, the most coveted award in his platform. That, for any scientist, is THE recognition. Hope you are well.

Karen
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Old 02-25-2013, 09:02 PM   #8
'lizbeth
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Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)

I wish they would have name it Adcyla - that would be easier for me. Glad to know about the ADC antibody drug conjugate part, at least I understand the name bettah.
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes

Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"

Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla

Reconstruction: TRAM flap, partial loss, Revision

The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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Old 02-26-2013, 06:54 AM   #9
NEDenise
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Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)

Jessica,
Great post! I've never met any of the Genentech folks, but I feel like I love them just the same. I try to remember to pray for them when I pray for us.

And hey...those of you who have someone's ear over there...if you can work it into conversation sometime....I'd reeeeaaallly love for them to find a targeted treatment for StageIV...that crosses the BBB. I have a selfish interest in seeing that explored!

But, still SUPER happy for our sisters who need, and can now get TDM-1!!! Thanks Genentech!
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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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Old 02-26-2013, 09:41 AM   #10
Del
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Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)

I'm also very excited about the approval...now waiting for Health Canada. And good to know I wasn't the only one that didn't like the new name! But thanks for the explanation Chrisy, that does help to explain it.

I've been part of the EMILIA trial in Toronto, and have just received my 42nd infusion...WOW! And FYI, the Toronto Star (newspaper) is publishing a story about Antibody-Drug conjugates, including TDM-1 (I don't think it'll ever be Kadcyla for me) likely on Sat March 16. I was interviewed yesterday for this story, so it might include a one-line quote from me
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MRM April 26, 2007
started chemo May 25, 2007 - Taxotere and Herceptin
finished chemo Oct 2007, continue on Herceptin for life, also on Tamoxifen
MRI in Jan 2008 shows no evidence of cancer in liver - NED!!
recurrence in left axilla nodes April 2010
now highly ER+, still HER2+
oophorectomy July 2010
start TDM1 (Emilia) trial Sept 2010
it's working!! can still palpate small node in axilla, but remain NED everywhere else
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Old 02-26-2013, 01:07 PM   #11
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Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)

This entire thread has just made me smile...and the smiles for me have been too few on Her2 lately with the rough times we have had. So glad you shared the celebration and the reason for the name! Flori, You are too funny! I guess I will always think of it as TDM1...thanks Genetech...bring it on!
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Old 02-26-2013, 03:08 PM   #12
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Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)

I finished my 1 yr. of herceptin and came home that night to the news on TV about approval of Kadcyla and the daily paper had an article the next day. I was doing a happy dance.

Next week I am scheduled for a PetScan and hoping all is good. I haven't spoken to my oncologist since all this happened. Just wondering if the cancer comes back will I take Kadcyla? Do I just continue on arimidex for the next 4 years and is there a test to let me know is HER2 is back and acting up? I am also scheduled for echocardigram next week and have no reason to think my heart will be anything but healthy. I see my MS Specialist next Monday and hope I can now go back to a MS drug that will stop the progression of the MS. In the meantime I'm thankful we have another med in our arsenal.
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Old 02-26-2013, 05:13 PM   #13
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Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)

How joyful it is to log on and see all this Her-2 HAPPY DANCING going on!!!
JML please call your sister and have her send a company wide email out to all her co-workers at Genentech. Can she ask them to log on as guests and just see all their cheerleaders?!
Truly, many of us are here yucking it up, raising our kids, loving life because of their combined efforts.
Thank you so much for sharing their celebration - just see how it ripples forward.
Love Kim (from CT)
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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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Old 02-27-2013, 03:23 PM   #14
ElaineM
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Wink Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)

The oncologists are happy here too.
My cousin who works for Roche the parent company of Genetech sent me an e-mail about the approval a few minutes after they got the news. Roche is happy too.
Alot of people will be helped by T DM1 -Kadcyla.
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12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
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14 Year Survivor
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Old 02-28-2013, 09:07 AM   #15
phil
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Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)

I have found every individual Genentech employee we have talked with to be top notch . Would love to meet the team that invented T DM-1 someday. Saved my wifes' life, 27 months and counting !! NED !!
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Old 02-28-2013, 10:12 AM   #16
'lizbeth
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Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)

Yes, this is so exciting! I'm still smiling. The talk is that Perjeta and Kacyla will be the gold standard for treating MBC. The Genetech bunch has really produced some life changing treatments for us Her2er's. Thank you! Thank you! Thank you!

Don't stop now . . . keep researching!
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes

Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"

Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla

Reconstruction: TRAM flap, partial loss, Revision

The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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Old 02-28-2013, 02:38 PM   #17
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Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)

This is exciting.

Now, how the hell do we get this drug? My doctor said he'd put me on it as soon as it came out as all chemos (seven now, plus herceptin and a liver resection) has failed me. But I had chemo yesterday and they have no intentions of ordering an expensive drug like that. A small clinic can't bear the costs. So, who here knows how I can get it?
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08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 02-28-2013, 03:58 PM   #18
jellybean
Senior Member
 
Join Date: Oct 2009
Posts: 46
Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)

Hi Coolbreeze,

I am sorry that your doctor's office won't order the drug for you. Perhaps he could coordinate with a major cancer center in your area. I am sure UCSF will have it soon, but that probably is too far away for you to go every three weeks.
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Old 03-01-2013, 12:19 PM   #19
schoonder
Senior Member
 
Join Date: Jul 2008
Posts: 186
Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)

Hello Coolbreeze, according to Genentech spokesman
Ed Lang:
The monthly cost of Kadcyla in the United States is $9,800. The estimated cost of a course of Kadcyla is approximately $94,000. This is based on people taking Kadcyla for 9.6 months.
When pricing Kadcyla, we considered a variety of factors including that cost of the combination of Tykerb and Xeloda (approximately $10,460 per month) which is the current standard treatment in this line of therapy and the comparator in the pivotal EMILIA study.
http://www.forbes.com/sites/matthewh...xpensive-drug/
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Old 03-01-2013, 08:51 PM   #20
CoolBreeze
Senior Member
 
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Join Date: Dec 2009
Posts: 562
Re: Kadcyla/TDM1 CELEBRATION @ Genentech:)

No chance can I go to SF every three weeks. Here's hoping a Sacramento hospital gets it soon.
__________________
http://butdoctorihatepink.com

08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
CoolBreeze is offline   Reply With Quote
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