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Old 07-20-2013, 08:23 PM   #61
KristinSchwick
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Re: SMACKDOWN Victory!

Dearest Denise,
Hang in there and be patient while God works out a solution. I know it is hard to wait and be positive but you've been so positive all along and such a "rock" to all those around you, now try to let it sink in that help is on its way. Prayers are coming your way and remember God works in mysterious ways. If being on steroids is a temporary solution to get you to the next big drug or opportunity.... then be patient and put up with it. If getting off steroids is in "His" plan, it will happen without a fight, so embrace his plan and just let go of fear and glide.
It doesn't hurt to have a good dose of anit-depressants, anti-anxiety and sleeping pills to help you along too. Don't forget to enjoy a good glass of wine every once in awhile too. Life is good.
Kristin
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[B]Kristin
Aug 2010: diagnosed stage 3b, 4 mo. after birth of son. 29 yrs old and breastfeeding, ER/PR-, Her-2+ started Neoadjuvant therapy: 4x FEC, 10x abraxane & Herceptin
Feb 2011: L mx with recon. Path. showed only DCIS but 4/10+ nodes.
March 2011: 6 wks rads.
Mother passed, lower back pain.
Late May 2011: Bone mets but organs clear; Tykerb, Xeloda, Xgeva. Stopped Herceptin. Implant infected: removed implant.
October 2011: Bone progression; Gemzar and Carboplatin & restarted Herceptin.
Jan 2012: Progression, re-classified as ER+; Tykerb, Herceptin, Zoladex & Femara. Anti-E is working!
May 2012: ovaries out, markers stable but elevated. Cont. Herceptin, Tykerb, Xgeva & Femara.
Dec 2012: aromasin
Jan 2013: faslodex, herceptin, tykerb
Jun: Kadcyla
Aug: Rads to hip, then Perjeta, Herceptin & Taxotere
Nov 2013: Perjeta, Herceptin, Halaven
Early 2014: Affinitor, Aromasin, Perjeta, Herceptin.
June 2014: Estradiol, Perjeta, Herceptin
Aug 14: Tamoxofin, H & P
http://kristin-notdying-blog.blogspot.com/
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Old 07-20-2013, 09:32 PM   #62
SusanN
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Re: SMACKDOWN Victory!

Dearest Denise...so great to hear this news, you just can't go "MIA" (Missing In Action) too long...you will be caught as you are so loved!!!
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10/18/12 Found pea size lump right breast
11/7/12 Biopsy
12/14/12 Lumpectomy
1/4/13 Rexcision, NO CLEAR MARGINS!! :(
2/11/13 Mastectomy with Expander Placed
2/15/13 INFECTION at Mastectomy site...emergency Surgery!!! Expander removed :(
DX: DCIS, IDC, Stage 2a, 2.7cm, 1/5 nodes positive
ER/PR-, HER2+++
3/28/13 Port placed
4/1/13 Begin 6 Cycles TCH Therapy
4/1/14 Finished Herceptin!!
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Old 07-20-2013, 09:37 PM   #63
Pamelamary
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Re: SMACKDOWN Victory!

Great news, Denise - now you just need to face down that insurance company.
Best wishes.... pam
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Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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Old 07-20-2013, 09:40 PM   #64
karen z
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Re: SMACKDOWN Victory!

I am sure you are greatly relieved.
Now, get ready to deal with insurance but your docs should be doing quite a bit for you on that.
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Old 07-21-2013, 12:28 AM   #65
SoCalGal
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Re: SMACKDOWN Victory!

Hey babe, sorry to be so absent...glad you're okay but let me cut to the chase: Genentech has a patient assistance program for Avastin, especially for patients who've been on it in the past. Your onc's office should be able to get you started on Avastin using the patient assistance program while fighting with the insurance IDIOTS. You can even call Genentech yourself to get their balls rolling!
Xoxo xoxo
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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 07-21-2013, 11:18 AM   #66
Andrea Barnett Budin
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SMACKDOWN Victory!

Losing one's hard work, to have it dissolve in front of you and seep into there stratosphere where only the FBI can relocate it -- is so emotionally depleting! Outrage and exasperation take over my personality... I understand your frustration, on so many levels...

I am glad you are sticking to your guns re treatment options. So proud. The tumor board apparently moves like it's stuck in molasses, but they seem to be coming around to the patient's point of view. You are the ultimate Decider. It's your life, your body, your brain they are all talking about.

I must google nim-null. I love the term, even if you just made it up. In fact, especially if you invented it/coined it. Kind of a numbskull. Dimwit.

I believe in your belief -- that there is no disease there! You're just trying to get rid of radiation necrosis. Your analogy is spot on.

Guess they had to go through all the other possibilities before they became ready to see that Avastin is doing it's job -- and now they must convince the insurance company of its need. And, yes, it is less expensive than surgery, recovery, etc.

If 1 mg of D/day is keeping you balanced, which is key, stick with it till the Avastin finishes its work. You have the rest of your longggggg life to loss the xtra lbs and find some dimples...

We were all just gathering around to get updated. WE are sorry to harass you. But we do love you, Cancer Assasin/chemo Ninja! Oh, and Soul Sister. (And Kate
s t i l l hasn't had that baby...)

The insurance company will come around! I/we have had to fight for lots over the course of the yrs, and in the end, we get what we should have been given to begin with. Tenacity is key. They count on you giving up and going away. So not happening here!

I do remember Flori, Flori, Morning Glory having an altercation with getting Avastin. And she won. Don't you love calling Genentech and "getting their balls rolling"?!!

Always love you, Flori. Always thinking of you. Always impressed with your wisdom, your wit and your tenacity! How you doing out there in La La Land? Your advice is precious. As are you, my old friend.

Denise -- get their balls rolling...

Love to you, and all, as always,

Andi
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 07-21-2013, 08:03 PM   #67
NEDenise
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Re: SMACKDOWN Victory!

My Dear, Dear Friends and HER2 Sisters!
I am touched, flattered, and overwhelmed by your love and support.
I am so sorry I caused you to worry...
and I did/do not for one second feel harassed by your attention.
In fact, if I had realized you were worried, I'd have posted sooner.


I promise not to go "MIA" again soon.
Patiently-ish is now one of my new favorite words!

I can't believe that HER2 royalty is more closely followed around here than real royalty. We really are an elite group!

Jenny - "colorful" prose - hahahaha! I get it!

Jilly - I missed you too! I was waiting patiently-ish to see how you were doing too! Is there a plan in place to "fix" the vision issue? That must be maddening!

Jody - Thank you for the candle! So sweet, and greatly appreciated!

Kristin - You are so right!
God does have a plan... and I am so grateful that it includes both Zoloft and Ativan!
I also hope it includes playing with my grandchildren someday!!
I have to come clean though...
I don't like wine much, and it doesn't mix well with steroids...
but chocolate takes me to my happy place!


Flori - Thanks for the heads-up on the Genentech Patient Assistance thing!!
You know I'll be all over that!
It's so nice to have the "voice of experience" whispering in my ear.


Marie - If I don't get my Avastin...
boy will that insurance company be shell shocked when my sisters from all over the world bombard them with letters!
I hope it doesn't come to that...
I know if it did, I know you could pull it off...
and I'm grateful just for the offer!


Andi- I do have dimples lurking in there somewhere!
And thanks, as always, for all your confidence in my decisions and support for what I believe to be true.
It means a great deal to me.
Now... as for "Nim-Null", I did not make it up. It's from the 70s show "Mork and Mindy".
Mork (Robin Williams) was from another planet (Ork) and that was his word for doofus, nitwit...etc...


So, again, my dear friends...
I'm so sorry I caused you to worry... and...
thanks for loving me enough to worry!
Denise
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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 07-22-2013, 01:52 AM   #68
Andrea Barnett Budin
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Re: SMACKDOWN Victory!

Denise -- I loved Mork & Mindy. Robin Williams was/is so very funny. Of course, I believe there is life on other planets. How could there not be? Did you notice the pea size of Earth? Teeny, tiny planet, so many galaxies. My favorite Martian was also a fav. I'd forgotten nim-null. So apt.

Third Rock (from the sun) w/John Lithgow and Jane Curtain cracked me up too.

SHAZBAT, FREM AND KREL were so Mork too. Remember them? When I get pissed off next time, instead of saying SUGAR, as my southern Mother did (along with shoot) -- I will try to use Mork's vocab.

So glad you felt the love. You were in our heads, as you often are...

Love Y'ALL... :-)),
ANDI
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...

Last edited by Andrea Barnett Budin; 07-22-2013 at 06:48 PM.. Reason: missing word
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Old 07-22-2013, 06:07 PM   #69
dearjilly
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Re: SMACKDOWN Victory!

I liked your post! Sounds like Avastin, behind door number 3, was the best option. That's great!
Much love, Jill
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[
Feb 2013 - NED
Mar 2013 - thought I had progression, watching brain.
April 2013 - GOT MARRIED!!!!
May 2013 - looks like no progression, but necrosis and bigger.
Oct-Dec 2013 - Avastin tx
Nov 2013 - MRI shows necrosis shrinkage!!!!
Jan 2014 - Lepto Mening. disease found
Feb 2014 - WBR
March - BLAHHHH
April 2014 - Liver mets found
April 2014 to present - Chemo again, whooohoo. Fun!
July 2014, scans look good.
Stay on Perjetand hercertin.
Nov. 2014 more lepto-mening disease more WBR.
Feb 2015 more lepto-mening disease in spine and neck. More radiation.
Start on TDM1 no more Perjeta stay on herceptin
March 2015 more radiation in my thoracic area, more lepto-meningial disease
April 2015 trying to walk again.
[/SIZE][/FONT]
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Old 07-22-2013, 06:13 PM   #70
dearjilly
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Re: SMACKDOWN Victory!

whoops, just saw your post now.....
They just say....sorry, there is nothing we can do, but you can always have hope. I guess perhaps the tumour has cut off the blood supply/nerve. What I have realize about the brain though.....nobody knows. I will still have hope, but yes I am MAJOR frustrated by it. Can't drive, can't focus, yada yada yada....
I have been depressed (poo, I know) so I'm thinking of taking some anti depressants. I guess, since my vision has gotten worse, so have my thoughts. If I get headaches, I worry...if I get dizze, I worry.....you know the routine. I just don't know how to get out of this funk.
I wish I could just be the old Jill again, I don't think that's too much to ask!?!?! Oh, but without the amount of booze that I used to drink!!
Missed you! Jill xo
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[
Feb 2013 - NED
Mar 2013 - thought I had progression, watching brain.
April 2013 - GOT MARRIED!!!!
May 2013 - looks like no progression, but necrosis and bigger.
Oct-Dec 2013 - Avastin tx
Nov 2013 - MRI shows necrosis shrinkage!!!!
Jan 2014 - Lepto Mening. disease found
Feb 2014 - WBR
March - BLAHHHH
April 2014 - Liver mets found
April 2014 to present - Chemo again, whooohoo. Fun!
July 2014, scans look good.
Stay on Perjetand hercertin.
Nov. 2014 more lepto-mening disease more WBR.
Feb 2015 more lepto-mening disease in spine and neck. More radiation.
Start on TDM1 no more Perjeta stay on herceptin
March 2015 more radiation in my thoracic area, more lepto-meningial disease
April 2015 trying to walk again.
[/SIZE][/FONT]
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Old 07-22-2013, 06:14 PM   #71
fauxgypsy
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Re: SMACKDOWN Victory!

Denise, just to let you know you are not the only unlucky one. Having beat down cancer (so far) I have since been diagnosed with a mast cell disorder and now, advanced end stage glaucoma. I really think about you often and your wonderful sense of humor. I hate that you have had this terrible disease but you have been a blessing to this community.
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In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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Old 07-22-2013, 07:29 PM   #72
Kkmom
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Re: SMACKDOWN Victory!

Denise - I am a pray-er and I will be praying for you. You sound like somebody that is just not afraid - that you look it straight in the eye and just keep on going - doesn't look like denial to me.
Stay strong - you have a whole bunch of tough women with you.
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Old 07-23-2013, 05:54 AM   #73
KsGal
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Re: SMACKDOWN Victory!

Im glad to hear the upbeat reports, and Im glad that they are going to let you continue on the Avastin for a while because..like you said...its working! As always, prayers and positive energy headed your way. Big hugs..and a high five!
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Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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Old 07-24-2013, 05:35 AM   #74
norkdo
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Re: SMACKDOWN Victory!

Denise! I have been following these posts to you and am in awe of your massive Ninja spirit! All prayers and love ,
Nora
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fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011

mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.


I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
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Old 07-24-2013, 09:46 AM   #75
BonnieR
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Re: SMACKDOWN Victory!

Just wanted to say a word to Jill. Don't just think about antidepressants, take some!! Or at least some Ativan for high stress moments. Have a talk with your doctor. I went through the early stages of treatment "cold turkey" and wish I had been taking the edge off sooner
You have a lot to cope with and should use anything available to ease the way
Keep the faith
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Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 07-24-2013, 01:27 PM   #76
Andrea Barnett Budin
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Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW...
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Re: SMACKDOWN Victory!

Bonnie, You are always so wise. I was thinking exactly the same thing re Jilly's comment!

We need all the help we can get. If those drugs aren't made for people like us, who are they made for?

Also, Jilly, I have an older friend who was having loss of vision. She went to another doc, as the first said, Let's wait and see. They gave her Avastin injections in her eyes, over a period of months, and her vision improved. She is not a bc-er.

Trying to help.

Love to y'all,
ANDI
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'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 07-24-2013, 04:48 PM   #77
dearjilly
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Re: SMACKDOWN Victory!

Oh thanks Andi! That would work for me with avastin injections in the brain! The tumour is right on the optic nerve. The messages are not being sent. My eye is good, just not where the tumour is. I did ask about avastin, but I guess I'll have to ask about it again. It's pricey, and I'd be buying it out of pocket. Now if I can find those pockets!
Much love to you Andi. Thank you so much for that. You are very caring.
Denise...I'm coming to you now....xo
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[
Feb 2013 - NED
Mar 2013 - thought I had progression, watching brain.
April 2013 - GOT MARRIED!!!!
May 2013 - looks like no progression, but necrosis and bigger.
Oct-Dec 2013 - Avastin tx
Nov 2013 - MRI shows necrosis shrinkage!!!!
Jan 2014 - Lepto Mening. disease found
Feb 2014 - WBR
March - BLAHHHH
April 2014 - Liver mets found
April 2014 to present - Chemo again, whooohoo. Fun!
July 2014, scans look good.
Stay on Perjetand hercertin.
Nov. 2014 more lepto-mening disease more WBR.
Feb 2015 more lepto-mening disease in spine and neck. More radiation.
Start on TDM1 no more Perjeta stay on herceptin
March 2015 more radiation in my thoracic area, more lepto-meningial disease
April 2015 trying to walk again.
[/SIZE][/FONT]
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Old 07-29-2013, 10:27 AM   #78
Rolepaul
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Re: SMACKDOWN Victory!

Dear jilly,
Talk to the Roche Herceptin patient support people. They might let you get the drug for free for this application.
Paul
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