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06-07-2013, 08:01 PM
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#21
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Senior Member
Join Date: Jul 2011
Location: Sydney, Australia
Posts: 473
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Re: Steroid Smackdown Round 3!
Denise (Denny), one little bit of information about AFL you may not realise, but I think with your Irish heritage will love, is that AFL is a game derived from Gaelic Football. Every year there is an international series between Australia and Ireland with "compromised rules" which is very entertaining, and it gives the two countries the chance to play 'internationally' - their only chance! Also, many players from Gaelic Football and AFL have switched codes, so often there are young Irish lads playing AFL here in Australia.
http://en.wikipedia.org/wiki/International_Rules_Series
(As an aside, I reckon your boys would probably love Hurling, which is a mad Irish form of hockey. Can you tell that my parents were both Irish and I've been indoctrinated?!)
__________________
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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06-09-2013, 08:51 AM
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#22
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: Steroid Smackdown Round 3!
Bonnie,
Laurel suggested Goo-gone too! But, surprisingly, there are no dosage instructions on the bottle for removing brain goo! Can you believe the carelessness of corporate America!?
Amanda,
Good to know which brand is best. I' on it!
Marie,
Don' know if you have them in Australia, or if you've seen them in your world travels...but Denny's restaurants sort of ruin that as a nickname for me. My hsband calls me Honey...so that counts. And the dogs think my name is Mommy. 
Tomorrow...the taper is down to 2mg\day...fingers crossed for good things!
Denise
__________________
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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06-10-2013, 04:45 AM
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#23
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Senior Member
Join Date: Jul 2011
Location: ottawa canada
Posts: 367
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Re: Steroid Smackdown Round 3!
Thank you so much Denise for the update. don't worry bout the weight. it will fly off when the scans show no further progression.
__________________
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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06-10-2013, 08:51 AM
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#24
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Senior Member
Join Date: Jul 2006
Posts: 869
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Re: Steroid Smackdown Round 3!
Denisey, Just chiming in to wish you all the best and continued good results...you are an inspiration! Hugs, Ceesuny who is actually Cathy
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06-10-2013, 04:42 PM
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#25
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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Re: Steroid Smackdown Round 3!
Hey Neddy!  )))
When I saw Smackdown #3 I couldn't believe it. When you look at the scale, just say -- duly noted...
You are going down in a really good way... Little by little, but unceasingly. The fluid is draining, taking the goo w/it. (My liver necrosis or is that necroses?/plural remain after all these yrs. Just some dead scar tissue filled w/a bit of fluid/cystlike. Maybe that's why my scale says what it does! Whatever. I am here!)
And so are you Neddy. Nisey. Both feel good to me. Just saying.
That ECHO sounded ridiculous, but emblematic of your situation. And good results are all that counts in the end. May Avastin do its thing. Taper away on d... Feeling good. Looking good. Sounding incredible. As always.
You did lose me on the AFL chatter, and I would be the one to like the team w/the best color combination and the cutest mascot. The tushes would interest me but then I'd zone out. Sooo glad though that you and your boys can bond over this and all have so much fun doing it.
Keep us smiling, Neddy. It's perfectly fine, btw, to state your Expectation and Intention clearly -- for your body to hear and obey -- and for the Universe to respond to IN KIND. You would jinx yourself if you stated you KNEW something was going to happen, or if you were full of fear and gloom. That is clearly the wrong message to put out there! YOU are amazing, Nisey...
ANDI -- w/an I please. No y for me (just the sound)...
__________________
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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06-12-2013, 06:50 AM
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#26
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: Steroid Smackdown Round 3!
Friends!
Down to 2mg/day! So far so good!
My balance isn't "normal", but I'm okay with that. It's waaaaay better than it was a month ago...when I was still on 12mg/day.
I felt so much more like myself yesterday...I not only cooked a delicious dinner...what my boys have affectionately named Polish Soulfood - pierogies, kielbasa, onions, cabbage... I even made strawberry shortcake for dessert. Baked the little cakes myself! (Not sure if I've ever shared my deep aversion to baking. I'm generally not very good at it...so I don't enjoy it. But the shortcakes came out very well...much to my surprise!)
Hoping for more good (read that energetic) days ahead. Although, my eldest jokingly reminded me yesterday..."Don't get too excited Mom...you felt great last June too...
then you fell and shattered your wrist...
followed closely by the discovery of not one, but two brain tumors....
Something's bound to crop up this summer too!"
Such a smarta$$! Where in the world would a child of mine learn such sarcasm?!
Happily, the very fact that he feels comfortable needling me about it...tells me he's not worried. Always music to my ears!
Thanks for checking in on me!
Denise
Denny
Neesy
Neddy
Decey - That's what my younger sister called me when we were kids
An NEDenise, by any other name...you know the rest!
__________________
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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06-12-2013, 07:06 AM
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#27
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: Steroid Smackdown Round 3!
Wow Denise, you are doing so well - I hope the 2 mg does the trick for you.
As for the smart a$$ kids, well, I think they got some of that from their wonderful no holds-barred mother (and I mean that in a good way)!
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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06-12-2013, 07:10 AM
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#28
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: Steroid Smackdown Round 3!
Oh honey!
I speak fluent sarcasm! The boys have been raised on a steady diet of sarcastic humor! Always in good fun! Never used to hurt anyone. We're very careful about that!
But we do love to tease each other...and we laugh a LOT!!
I wouldn't have it any other way!
D |
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06-12-2013, 08:57 AM
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#29
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
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Re: Steroid Smackdown Round 3!
Denny,
Send me a Private message when the docs tell you the Brain MRI results.
Nina is doing great. Scare in April was due to a change in MRI scanners. Confirmed with May results. I picked it up in April, but the brain/spine doctor said I was sadly mistaken. Proven right in May. Colorado is good for me.
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06-12-2013, 11:31 AM
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#30
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Senior Member
Join Date: Feb 2013
Location: Lincoln, NE
Posts: 265
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Re: Steroid Smackdown Round 3!
Hey there Gorgeous!!! Wonderful, Fabulous, Fantastic news ringing to my ears today!!! Thank you for the JOY!!! HUGE HUGS!!!
__________________
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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06-12-2013, 12:25 PM
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#31
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Steroid Smackdown Round 3!
WEANING is WORKING! Great news for you.
Just a word in your ear that when I was down to the 2mg/day my piggy cheeks started to deflate in earnest.
Cheek bones - watch out - here they come! Extra chins - receding day by day. How is your sleep pattern? Coming back to normal? I know, it has been SO long, how do you know what "normal" is any more?
__________________
"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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06-12-2013, 12:59 PM
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#32
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: Steroid Smackdown Round 3!
Oh Steph!
From your mouth to God's ear!! Will I even recognize cheekbones when I see them?! Should I have a going away party for that extra chin? Its been with me so long...it only seems right to mark its departure somehow.
I have been living "happily" on 4 or 5 hours of sleep for so long! I realized yesterday, when I needed a nap in the afternoon...that 5 hours wasn't enough anymore. Yay! That has to be a good sign!!
You know all about this steroid nightmare..in a way that one can only achieve by walking down that road yourself! Thanks for keeping me company while I trudged along. I hope neither of us ever has to pass this way again!
Denise
__________________
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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06-12-2013, 02:31 PM
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#33
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Senior Member
Join Date: Mar 2009
Posts: 508
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Re: Steroid Smackdown Round 3!
Oh, Denise, just absolutely loved reading your good news at weaning! I had the "moon face" thirty years ago with the steroids that came with my ancient chemo then. Now it's moon face because I'm old and fat! Here's hoping that things continue to go well, and you find your regular energy and sleep pattern again soon! You are always in my prayers!
Barb A.
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06-13-2013, 12:02 AM
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#34
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Senior Member
Join Date: Dec 2011
Posts: 585
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Re: Steroid Smackdown Round 3!
Woo hoo! This is wonderful news! Oh my goodness, your dinner sounds wonderful. So excited that you felt good enough to even bake shortcakes! And so excited that you are feeling more like yourself again. I hope every day gets better and better. Prayers and positive energy as always...
__________________
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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06-13-2013, 07:24 PM
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#35
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Senior Member
Join Date: Aug 2011
Posts: 271
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Re: Steroid Smackdown Round 3!
Denise, I admire you. Your one great lady. Did you ever consider running for President? We need someone like you in office!
__________________
DX November 2010
Brain MRI, CT of lung, liver, bone, all clear
Double Mastectomy w/expanders December 1, 2010
ER- PR- Her2+++, grade 3, 12 positive nodes out of 15
Stage IIIc
Started TCH/Chemo December 31, 2010
6 rounds TCH
Herceptin every 3 weeks for a year
33 rounds of TomoTube radiation, to chest wall, neck, skin and lymph area
September, 2011, MRI to lower spine, hips, DX bulging disk, L4 & L5, pain not from cancer
Expanders removed, implants in Dec 1, 2011
Finished Herceptin, December 21, 2011
August 2012, CT of chest and abdomen, all ok
Enrolled in MC1136 Phase I Peptide Vaccine Trial at Mayo Clinic, Rochester, Minnesota
March 2013, First Vaccine
April 2013, 2nd Vaccine
May 2013, 3rd Vaccine
June 2013, 4th Vaccine
July 2013, 5th Vaccine
August 2013, 6th Vaccine Done!
September 2013, Mayo visit, Echo results 68, vaccine did not effect my heart! Blood work normal.
January 31, 2013, Mayo visit, Echo normal
February 23, 2014, Numb lips on right side, Brain MRI, normal!
June, 2015, Finished the trial at Mayo Clinic. Feels good!
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06-14-2013, 06:58 AM
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#36
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: Steroid Smackdown Round 3!
Guess what!!
My wonderful onc - Amy Sanders Clark - called me...
She, and my fabulous neurologist - Steven Brem - consulted and have decided that they'd like to have my brain MRI done, not in July as originally planned...
but,
wait for it...
this Tuesday!!
That's right...only four days till I get to see how much goo is GONE!!
I suspect they're almost as anxious to find out as I am. They lobbied hard to be allowed to try this treatment regimen...and I also think they genuinely care about me not dying while having the craniotomy I don't want!
I know the goo is not all gone, because my balance is still a little "off"...but hopefully it's reduced enough that my body can do the rest...
and those tumor board clowns stop talking about scooping the goop (craniotomy)!
Some of you, who have been trailblazers...trying out unusual/cutting edge new treatments are probably not surprised by the attention my two docs are giving to me and my progress...
But, I am not used to this level of attention from medical professionals! And, I like it! I don't like needing 'experimental' treatment...or immediate and undivided attention...but I admit...the fact that when I did need it...they were only too glad to provide it...makes me very grateful!
And...if it all works out the way they (and I) are hoping...WOO HOO!!
So prayers for an awesome MRI on Tuesday 6/18...
and a spotless CT on Thursday 6/20...
will be most welcome! Prayers are what I need most!
Because...I know in my heart that...
all this medical expertise...
all this professional devotion to my care...
all the medicine in the world...
only works because God is involved...and wants it to work.
Fortunately, he seems to be very fond of me (and all of you)...and seems to agree with me that I have a LOT more work to do before He calls me home!
I believe all prayers get answered...so...I'll let you know next week whether our prayers have been answered the way I'm hoping they will be.
Sending love to all of you!
Denise
Now...
Jill!
I haven't seen your beautiful wedding avatar pop up for a while!
Missed you!
It's very flattering to be nominated for president! Thank you! I am not however the run for office type. My feelings get hurt too easily, and I don't play well with others. Having to consult with a committee makes me crazy! I have a plaque on my desk that says, "For God so loved the world, that he did NOT send a committee". I could never work with Congress - the ultimate committee! They'd drive me either to homicide or suicide! If we ever want a benevolent dictator...I'm your girl!
But...my eldest son plans to be POTUS one day. So I may yet get a behind the scenes look at the White House! Then again...I'm not sure he can get elected, no matter how great I think he'd be! The kid has a heart of gold. He is young enough to still believe that everyone can and should have everything they need. He makes FDR, JFK, LBJ, Clinton and Obama look like slackers when it comes to making sure the elderly, children and the disadvantaged have what they need to survive. And, of course, he's very devoted to medical research...as he has a vested interest in curing cancer! ]
__________________
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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06-14-2013, 08:28 AM
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#37
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: Steroid Smackdown Round 3!
Denise, we are as eager as your doctors to know what's going on in that head of yours!
And think you would like some post it notes I have. "God's on vacation and I'm in charge!"
Keep the faith!
__________________
Bonnie
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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06-14-2013, 04:44 PM
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#38
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Re: Steroid Smackdown Round 3!
Hi Denise,
I look everyday for your posts, and am so glad to hear this positive news. I "hated" that drug and was manic when I was on it. One night I woke up and told my husband, " I could be tarred and feathered", and then proceeded to tell him that I was getting better. I actually remember this. I was absolutely crazy. I will be thinking of you on Tuesday, and I sincerely hope that you will soon be off this drug for ever.
Thinking of you,
Barbara H.
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06-14-2013, 08:56 PM
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#39
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Senior Member
Join Date: Jul 2011
Location: Sydney, Australia
Posts: 473
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Re: Steroid Smackdown Round 3!
The prayers for you will be ramped up for Tuesday Denise! And you do have a lot more work to do before it's your time, and that includes continuing to spread your love and energy on this board!
Best best best wishes, Marie x
__________________
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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06-15-2013, 02:54 AM
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#40
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Senior Member
Join Date: Oct 2011
Location: Geelong, Australia
Posts: 250
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Re: Steroid Smackdown Round 3!
Lots of best wishes from me too Denise, let the goo be gone, and let's see some cear scans already! You deserve it!
Dawny. Xxxxx
__________________
Dx May 27 2011, age 43
Stage 1V 3.6cm breast lump, spot on lungs, nodes chest + neck
HER2+ ER/PR-
Abraxane weekly - 16 weeks
Herceptin every third week
September 26 2011 N.E.D!
Herceptin ongoing
8th Dec 2011 Brain MRI - clear
20th Dec 2011 bone/cat scan clear still NED
April 2012 scans show axillary node lump - ? what to do...
June 2012 Axillary node dissection 1/11 nodes affected, a wide local excision shows DCIS. Now what to do again? Watch and scan 3 monthly
April 2013, two spots in nodes to chest wall, start TDM1 (Kadcycla) as part of clinical trial
July 2013 stable
Oct 2013 progression off TDM-1 (Kadcycla)
Nov 2013 radiation to lymph nodes in sternum
Dec 2013. Mastectomy right side, pathology shows tumour was HER-2 negative, no wonder TDM-1 (Kadcycla) didn’t work!
April 2014 NED. On Herceptin only
August 2014 NED. On Herceptin only
March 2015. NED. On Herceptin only
September 2015 NED on Herceptin only
March 2016. Pulmonary embolism, Clexane injections daily forever. Still NED On Herceptin only
Nov 2016. Bone Mets in ribs - Radiation. Don’t know if bone Mets are er-/pr-/HER2+ or triple negative.
Can’t give self injections on to tablets (Xarelto) for blood clots.
2017 NED - On Herceptin only
2018 NED - On Herceptin only
2019 NED - On Herceptin only
2020 NED - On Herceptin only
2021 NED - On Herceptin only
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