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Old 12-15-2008, 09:06 AM   #1
madubois63
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last one in San Antonio...Hi from madubois63

Well, everyone else is gone, and I will be heading to the airport very shortly. I will need a few days to sift through the many pieces of information I collected. I actually had to buy a new suitcase to bring home all the stuff!! I picked up some information on IBC and just so much on metestatic bc that my head is spinning. It is very exciting to see what is coming our way. Just a little tidbit for you that I thought was so amazing. Dr. Susan Love told us about a project she is working on. It is a sort of band-aid that is placed on the nipple. The woman then massages the breast, and if fluid is present, it will turn the band-aid colors showing protiens that are in bc (or not). From there the woman will go on to get further testing. If it works like they want it too, it will save so many lives. Think about our daughters, grandkids and women in less developed counties that can buy this in the drug store and do a simple test at home...

Please keep the faith. So much is happening, and it is happening fast. I know for some of us it may not seem fast enough, but they are making incredible advancements!!! The doctors, reasearchers and scientists are always happy to see us - the end result of what they are doing. Christine is just AMAZING, but you all know that and the rest of the ladies (and gents) that were here are just the friendliest, most amazing people!! I can not thank Joe and Christine enough for this opportunity and can't wait to have the time to pass along some of the things I learned.

Love to you all...Maryann
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Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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Old 12-15-2008, 09:12 AM   #2
Believe51
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Thumbs up

I am so looking forward to hearing all you gathered about IBC. You know by now this is my quest! Thanks for inspiring hope until your return when we shall be revitalized! Travel safe my lil packrat!! LOL>>Believe51
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6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 12-15-2008, 10:34 AM   #3
tricia keegan
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A simple home test?? Now would'nt that be something!
It all sounds very excitng Maryanne and I too will be looking forward to hearing more..wishing you a safe and pleasant trip home!
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Old 12-15-2008, 10:44 AM   #4
dlaxague
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Another last one here

My flight out isn't until 3pm. It feels different to sit here La Quinta's lobby without the hustle and bustle of thousands of symposium attendees coming and going.

This was my fifth consecutive year at SABCS. I am less starry-eyed than I was in those first few years but there is still an overwhelming awe that results from seeing the quality and number of minds that are working to find answers to breast cancer. It is simultaneously encouraging and frustrating. We know so much more about breast cancer than we did 5 years ago. Unfortunately, the overarching theme about what we have learned is that it is an incredibly complex topic, and that each answer gained raises many more questions, often without (yet) improving survival in the trenches. But still, this year included many incremental improvements and some promising new treatments.

I was glad to get to meet Brenda, Mary-Anne-from-Texas, and Chrisy. Joe, you were busy and so I intended to return later to express my thanks for what you do, in person. But time just flew by and the next thing I knew, they were dismantling the exhibit section. So please again accept my cyber-thanks for the existence of this wonderful resource.

There are many online resources for symposium updates and summaries, and of course the SABCS website itself is posting slides and posters more quickly than ever before. Here is CR magazine's page with blogs and podcasts by Musa Mayer and Kevin Begos:

http://www.crmagazine.org/archive/Pa...FromSABCS.aspx

And Susan Love's blogs are posted on several websites:

http://blog.dslrf.org/

http://www.bewell.com/Blog.aspx?blog...ookieSupport=1

I haven't had time to read them and see if they're the same so I included both URLs. (are there any English majors in the audience? I'm pretty sure Grammar Girl said you don't put and apostophre after the initials (URL) when you add an "s", but it looks wrong to me).

It's hard to express what it means to be in the middle of so much brilliance and dedication. While my own starry eyes have become a bit tarnished over time, it still affects me strongly. For example, I attended a lunchtime basic science presentation. I was barely able to follow even the most basic gist of the discussions among these young researchers as they discussed their 6 or 7 different studies on the topic. Kind of like listening to a foreign language that you know just enough of to understand what the topic is that is being discussed but not really to follow what is being said about it. But the energy of these brilliant, mostly-young minds is palpable and hope-generating.

One disappointment this year was that there were no updates on the adjuvant Herceptin trials. Not a single one that I saw (and I was looking).

Time to head to the airport. The first leg of my travels is a flight change in Denver where it appears to be minus eleven degrees. Brrrr.

Love,
Debbie Laxague





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Old 12-15-2008, 04:13 PM   #5
Joe
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Just got home

Christine and I just returned to an unusually cold and rainy San Diego.

Anyway this year there were many new anncouncements and it will also take me a few days to sort all of the info out.

I do wish to thank all of those who attended the meeting on our behalf. Real dedication is when you can spend 4 days away from home less than two weeks before the holidays in order to help better our organization.

My thanks to:

Brenda, Maryann (TX), Maryanne (Madubois), Loren, Donna, Chrissy, Paty and Veronica for taking the time to help out. There is a special place in heaven for all of you.

Warmest Regards
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Old 12-15-2008, 04:21 PM   #6
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Wink last one in San Antonio.....Hi from madubois63

It must have been amazing to be there and hear about all the new ideas and developments in breast cancer.
Just reading the posts you all provided is amazing.
That band aid test sounds great. I feel hopeful and excited about all the new developments and ideas.
Mele Kalikimaka (Merry Christmas)
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Old 12-19-2008, 09:19 AM   #7
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Maryanne and Debbie - and all - Thanks for this thread and your updates. These words are very powerful and give so much hope.
Flori
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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.
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Old 12-19-2008, 10:15 AM   #8
karenann
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Thanks to everyone who attended SABCS... and for the information you will share with us in the upcoming weeks. I am especially excited to find out more information regarding the "band - aid" project! Breast cancer runs in my family (I am the 9th documented case) and I worry about my daughter.

Yeah Dr. Love!

Karen
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