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Old 02-14-2008, 07:40 PM   #1
HavahJ
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If no chemo works, then what?

I did abraxane/herceptin . It was a no. Now I'm trying navelbine/hecepton/teloda. Then what? HavahJ
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Old 02-14-2008, 07:54 PM   #2
Joe
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You may wish to discuss the Trastuzumab-MCC-DM1 trial with your oncologist. I've heard good results so far.

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Old 02-14-2008, 10:14 PM   #3
Bill
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Hey sweetheart, you have to slow down just a little bit and let your chemo. do it's job. I know that's easier said than done, but you may be too focused on your tumour marker results. Who is ordering those tests? You or your oncologist? I know you're not a religious person, and that's okay, but you need to take a step back, take a deep breath, and try to focus on the things that are going to help you. One, you must strive to cultivate a more positive attitude towards your treatments. Visualize them working and destroying the cancer cells within your liver. This is very important. You seem to be in a new course of treatment and have already pictured it failing and wondering what is next. You are taking on stress that you don't need by doing that. You must have faith and a positive attitude towards each treatment, and do the the best you can to fight each step of the way. Eat as well as you can, rest well. You have already shown a strong will to live by coming to this site. Maybe it's just too overwhelming at this point. What if you just pick one day a week, the day when you normally feel the best and don't come to this site and don't even think about the cancer, and regroup for the battle, watch tv or movies or whatever, go to bed early, and the next day, come back strong. You need a break, you deserve a break. You're always in my thoughts and prayers, love, Bill
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Old 02-15-2008, 08:05 AM   #4
tousled1
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Jan,

I agree with Bill. You must slow down. It seems that it wasn't that long ago that you started the Abraxane so how can you say it isn't working. As for tumor markers -- they are not the most reliable indicator. Any slight infection or inflammation can affect tumor markers. Also you should only be having them at about every 12 weeks. It takes a chemo regime approximately 12 weeks until you can tell if it is working for you. I know 12 weeks sounds like a life time but it's not -- it's goes by quickly. Please Jan, slow down, stop and smell the roses. Many women here are Stage IV and have been for many years. I know that you will kick these mets to the curb but you must be patient. There is no durg that works overnight.
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Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 02-18-2008, 04:51 AM   #5
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I hope that you have managed to calm down a little now as I can imagine how terrible the news must feel. I hope that you can perhaps now look at the battle ahead with a bit more hope.

There are many options still open to you (the one I took are in my profile), first (I know this is a disputed area) but really please try to first concentrate on the drug working not the contrary (placebo effects are real and reported, not a disputed area).

Try to concentrate on the successful cases that we have on the site or elsewhere and how after (yes some awful time) been able to now be fine.

My advice is to never ever lose hope, ever. Face the tiger do not be in denial, know all your treatments options be proactive and keep hope. Connect to something powerful whatever form it takes for some it is faith in a higher power and for other people it is good vibe/universe or simply believing in your own inner power/ visualisation (it can only help).

Also be aware of the reasons the treatment just has to work and how great you will feel after it has worked.
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35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies

Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..

superior vena cava blocked: stent but face remains puffy

April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.

Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.



'Under no circumstances should you lose hope..' Dalai Lama
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Old 02-18-2008, 01:31 PM   #6
StephN
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Look at your "gifts"

Hi there -
Hope the signs of spring will lighten your load just a LITTLE bit.
By the way, that combo you are on was a TRIAL just 4-5 years ago. This is what Esther took for her VERY extensive liver mets - and it WORKED for her.

To me it is your fear that you need to grip on and dampen down. Believe me, I know what it is like to face an onslought of mets. But, I managed to calm down and find ways to try to help myself.

Music became my constant companion. I shopped for new CD's that would infuse me with calm and help me center myself. (Nothing like mets to send us reeling.) Go and use the listening booths to find something that you can feel a physical change from. Then buy it and listen to it.

I knew I could not count on the chemo to do it ALL. My state of mind was important to me. My emotional well-being was important to me. My ability to sleep was important to me.

You have something that I did not have. A support group that could give you some success stories. You have some real reason to HOPE that a treatment can work. I had to carve my own way with almost no data for the trial I was in to give me much more than a SHRED of hope.

You and your care team have plenty of new drugs to try. I was nearly at the end of my possibilities. You have vast new knowledge as an ally. If your care team does not seem to take advantage of this then find a care team who will.

The answer to your question is to "get your affairs in order." But so far I have NEVER DONE THAT! I have a file that is started, seen a lawyer, but never finalized it. Wrote a codicil to my OLD will, but that is it.
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"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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Old 02-18-2008, 04:26 PM   #7
SoCalGal
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I think that you need to find a therapist who can help you to calm your panic. I have been there with screaming panic in my head. Jan - we are all going to kick the bucket - DIE - that's the one guarantee in life.

Ironic that it's so hard for us to face since it happens all the time.

You can count on the chaos of life. It is a sure thing that we can never tell what is around the next corner - meaning miracles are waiting sometimes for us. Trying to have faith and allow the possibility of a healing is not easy but it's possible to do - sometimes you just need help getting there.

It would be good to find someone who could help you until you feel less panic. You received very good responses to your limited post. Take them to heart. Is there a friend or family member that you can talk to while you are going thru this difficult time?
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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