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Old 06-22-2019, 01:13 PM   #1
SoCalGal
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Join Date: Apr 2007
Location: LA LA Land
Posts: 1,605
Whack-a-mole next...

Welp...after 12 years of MBC and constant treatment, my slow progression has finally sped up. Latest PETscan showed mucho metabolic activity in sternum, manubrium and lungs.

BRAIN MRI
Brain MRI no bueno, 6mm fucker in right frontal, scheduled for True Beam zap next week. New words this month: intramedullary, meninges, meningeal, intrathecal, Ommaya reservoir, Rickham port, Buckingham palace (just wondered if you were still reading)...

SPINE MRI
C2 SPINAL CORD !!! has a lesion IN THE CORD !!! which points to Leptomeningeal disease. Sob sob sob. I decided to wait on the spinal tap because I'm not putting anything into my head at this time anyhow and the taps can be false negatives and I wanted to go dance Thursday night no do a spinal tap.

Will do whack a mole approach until I can gather more opinions and gather more wits. I got fitted for the head and face suffocation mask. Why the docs let me do that "fitting" without Ativan is a mistake they won't make again. Someone had the gall to say it's like a spa treatment! Yes, if the spa you attend has a 300 pound sweaty hot sumo wrestler sit on your face while they wipe you all down with ice water. I've been to many spa treatments in my lifetime, there's never been a spa MRI machine as part of the rejuvenation!

C2 cord lesion is also the reason I'm feeling random numbness on my right (unaffected) breast, arm pit, and creepy crawlies on my scapula. All right side.

C2 lesion due to be zapped via SBRT also next week - hoping like mad it doesn't cause a terrible side effect like PARALYSIS from the neck down and hope I don't drool while I'm unconscious from the scoop of Ativan I plan to swallow prior.

L1 is again crazy hot and since I just had rads in 2016 it is too dangerous for lower paralysis for rads again and no surgery either, too complicated unless risks of surgery outweigh risk of none. L1 is the cause of random numbness in groin, right tush, right leg, outside calf and bottom of foot.

But hey, what's a little Cancer Fire among friends?!?

There is so much uncertainty with regard to treatment and options.

Not sure I can put a reservoir in my head and pour in chemo. Not sure that intrathecal herceptin will suddenly work on cancer that is herceptin resistant, and how would my allergy reaction handle herceptin in my CNS? I am the course-of-least-resistance-girl, and none of that sounds good. Also on the forefront of my mind is that I DO NOT HAVE SYSTEMIC CONTROL. I just went back on Herceptin/xeloda and have no idea if that has had one iota of affect. Too soon to know.

I did look into the her2+ CAR T trial at City of Hope. I signed consent and will be on some list for some steps in the future. It's very early phase, slow cautious enrollment, and not sure again, on my herceptin allergy and inserting engineered trastuzamab into all my hopped up Tcells. I don't quite understand all the science, but I'm on a need to know intake for now, due to extreme emotional overload. And fear. And grief. And anxiety. And F-bombs.

I also signed Death with Dignity papers and got that started. Sorted out the important who wants what with my kids, while I'm still able to interject and add stories with these various pieces and dishes and jewelry and art. And now I know what I can give away to other friends and family.

I am not writing the ending but I do not wish to be caught off guard, somewhat paralyzed and unprepared.

The rads oncologist called me at 9:30 last night to say they scheduled me for Monday. I haven't really had time to deep obsess if this is the right place for the right procedure but have kind of made peace with my inability to figure out a different plan. These same people have been zapping me for the past 23 years. They must know their stuff. The last brain zap in 2008 got rid of the spot. I'm thinking he's had 10 more years of experience, so he can surely hit this new spot with similar success.

I'm not sure how hard I am willing to fight unless QOL can be reasonable. Time in and of itself it not significant. BUT time with reasonable QOL is worth the fight.

I welcome all input and ideas!
And with much gratitude to all my friends on here, old and new, friends still here and those in a different "place" your company on this journey has been priceless.
Love, Flori
__________________
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 and brain MRI shows improvement, resolved areas and nothing new. switch to single agent ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful. working on QOL and managing nausea.
3/18/20--->Just did cycle #5
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