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06-04-2013, 06:47 AM
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#1
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Steroid Smackdown Round 3!
Hello Friends!
Just a little Smackdown update.
(Andi - I didn't make up the term, but you're right...it's exactly what I want to do to this whole mess!)
Had round three of Avastin yesterday, accompanied by a very relaxing and empowering Reiki session. A remarkable combo to my way of thinking. All that energy and good meds focused on the goo simultaneously...Mmmm Mmmm Mmmm - how could I go wrong?!
Beginning today, my decadron taper is down to 3mg/day!!
Woo Hoo!
I hate to tempt the fates...or jynx anything by saying it out loud (Hey! I'm Irish! At least here in America...superstition is always lingering just below the surface for us!) but...
I think, waaay in the distance...
I can almost see the light at the end of this steroid cluttered tunnel! Though it is always possible that the light is just a reflection off the remaining brain goo...
but you know hope springs eternal in my heart!
So far the taper hasn't sparked any of the usual symptoms...very good sign! But it hasn't lessened the ability to pack on pounds simply by breathing either. I'm taking comfort in the fact that my docs don't think this is unexpected. My body is really whacked out from all these months on high doses of steroids.
Ah well...one thing at a time. And to quote TriciaK, wise woman that she was..."This too shall pass"!
Echo on Thursday...hoping for good things. I've been out of breath lately, but again...I'm carrying a lot of extra weight...so I'm not surprised. And then, a little Vitamin H in the afternoon to sort of top off my tank in this war to keep BC at bay.
Thanks so much for all the prayers, good wishes and support. I'm definitely allowing myself to be cautiously optimistic that Avastin is going to be a success in helping my poor brain reabsorb the goo. But...again with the whole tempting the fates thing! 
Sending you all love and light!
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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06-04-2013, 02:53 PM
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#2
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Senior Member
Join Date: May 2012
Location: Bethlehem PA
Posts: 395
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Re: Steroid Smackdown Round 3!
Yay! We will toast this good news tomorrow morning with our toast!!
__________________
 39 year old wife, mother of one and nurse.
April 20, 2012: Dx Invasive Ductal Carcinoma
April 25, 2012: ER+(5%), PR-, HER2+++
May 10, 2012: BRCA 1,2 Negative
May 23, 2012: MUGA Scan EF 70%
May 31, 2012: B/L Mastectomy. 2/2 nodes removed and CLEAR!! Power Port placed. 2 Drains. 2 Expanders placed
June 5, 2012: Drains OUT! Ahhhh..
June 12, 2012: Final Pathology Report, .8x.3cm tumor. Micromets to 1 node .35mm under cytokeratin staining. Stage 2A. Onc says "you are lucky to have found this early"
July 10, 2012: Started 6 rounds of TCH with weekly H
Sept 5, 2012: MUGA 65%
Sept 20, 2012: CAT scan of brain clear!
Oct 23, 2012: LAST TC! AMEN! Continue Herceptin every three weeks until July 2013.
Nov 19, 2012: Port out!
Dec 5, 2012: Started radiation
Dec. 10, 2012: MUGA 65%
Dec. 13, 2012: Turned 40. BEST BIRTHDAY EVER!
Jan 23, 2013: Last radiation. Told I am NED. Continue Herceptin every three weeks till July 2013.
Jan 29, 2013: Begin 5 years of Tamoxifen.
Feb 28, 2013: CT Scan with Contrast of lungs. 5mm and 4mm nodules of unknown origin. Rescan in 3 months.
Mar 6, 2013: EF 60%
May 8, 2013: Exanders out, implants implanted...abd. lipo and fat moved up. Girls are looking good!
June 3, 2013: CT Scan with Contrast of lungs. Previous nodules gone. New nodules (2mm and 3mm) found. Rescan in 3 months. So sorry I opened this can of worms...
June 11, 2013: EF 60%
June 25, 2013: Last Herceptin. wow...
Aug 20, 2013: Tumor markers within normal limits. Xray to sore left ribs shows no disease or fractures.
Sept 9, 2013: CT of lungs shows no disease. Closing this can of worms and moving on.
Nov 20, 2013: Tumor markers within normal limits. Severe Vit D deficiency, started on prescription Vit. D. Blaming chemo for this.
Feb 2014: Tumor markers within normal limits.
May 2014: Tumor markers within normal limits. Graduated to twice yearly onc appts.
Oct 2014: Tumor markers within normal limits.
May 2015: Tumor markers WNL. Bone density scan fine. Bone scan and xray of ribs shows "something" 4th right rib. Could be healed fracture but if it is healed why does it hurt?
Nov 2015: Tumor markers WNL. Follow up bone scan clear.
Feb 2016: Syncope! WTF? Dizzy too. Brain scan clear, ECHO EF 60%, Halter Monitor shows heart is fine. Viral? I will never know.
June 2016: Tumor markers WNL.
Oct 2016: Stabbing pain right eye. Long story short, trigeminal neuralgia.
Nov 2016 Brain MRI clear.
Jan 2017: Tumor markers WNL, still getting weird pain right rib area, and sometimes right upper chest. Xray x2, Bone Scan, Breast MRI all clear. Scar tissue? Rads. I may never know.
www.onmywaytosurvivorhood.blogspot.com
www.thechemobag.com
www.facebook.com/thechemobag
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06-04-2013, 03:21 PM
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#3
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: Steroid Smackdown Round 3!
Yay!!
So glad you continue to taper.
So glad Avastin seems to be helping you.
Just stay away from the @#$&% liar! Avert your eyes when they weigh you to calculate your dose. You're beautiful just the way you are.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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06-04-2013, 05:26 PM
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#4
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: Steroid Smackdown Round 3!
WooHoo! except for that darn scale.
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes
Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"
Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla
Reconstruction: TRAM flap, partial loss, Revision
The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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06-04-2013, 05:50 PM
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#5
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: Steroid Smackdown Round 3!
Hi,
The tapering IS good news and "this too SHALL pass".
Amy is right. Keep the tapering going and realize the scale is weighing you under highly unnatural circumstances, which can not be avoided right now.......but is meaningless at this point. Just go into a different "zone" (like the beach) when you step on or, as a colleague suggested when I first got all the bills that also had been sent to insurance, file this as "not of my concern". If you don't, you can easily fill your head with stuff that really does not need to be in there right now!!!
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06-04-2013, 06:03 PM
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#6
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Senior Member
Join Date: May 2013
Posts: 570
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Re: Steroid Smackdown Round 3!
Let me just say, God Bless your GREAT attitude. I find it truly inspirational. I'm really new at this, haven't started my chemo yet but had my port installed today. I am kind of watching you and reading back through your posts---not stalking but our cancers (and our attitudes---I hope) are very similar. Thanks for smoothing the path for me just a little bit.
__________________
Tracy Arcari
___________________________________________
11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%) HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!
2/5/18 CT & BS = STABLE
/ /
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06-04-2013, 11:26 PM
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#7
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: Steroid Smackdown Round 3!
Keep on keeping 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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06-05-2013, 12:55 AM
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#8
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Senior Member
Join Date: Jul 2011
Location: Sydney, Australia
Posts: 473
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Re: Steroid Smackdown Round 3!
Taper on and on Denise! Plenty of time yet to get the weight down - the main game is goo reduction and you seem to be winning that one at the moment.
Best wishes, Marie
__________________
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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06-05-2013, 05:35 AM
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#9
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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!
Marie, Amanda, Jenny, Dawn, Pam...all you Aussie Gals...
This has nothing to do with brain goo...but we hijacked Amanda's thread to discuss this VERY important topic...so why not this one?!
I introduced my boy to the world of Footy. (That's AFL - Australian Football League for those of you, who like me, are un-initiated)
OMG!
They loved it!
They've become instant fans!
We watched every video clip on the AFL site...met the teams, learned the rules...watched the highlight reels! The boys were even impressed with the refs' style of calling goals and behinds. They've been walking around imitating them for two days now! These are teenagers don't forget...not little boys. They immediately wanted to know when the next game was streaming so we could watch! We don't even pay for the NFL Sunday Ticket, but I think we'll be AFL subscribers by the weekend!
Such impressive athletes...well-muscled, NO fat, no muscle-bound behemoths...lots of great legs and biceps. That was more impressive to me frankly than to the men in my life...but there was a LOT of eye candy on the pitch at all times!!
And the game really moves! No downtime like in the NFL. Since I haven't actually had the pleasure of watching a match yet, I'm not prepared to support one team over another - and I don't want to start a "thing" here among the true fans...but based exclusively on jerseys...I like the ones with the anchors on the front and the team that wears the Gryfindor colors.
Thanks for the intro to the wonderful world of Footy! Those of you who haven't checked it out yet...Google AFL...you won't be disappointed! It must be Austalia's best kept secret!
Denise
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06-05-2013, 02:34 PM
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#10
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Senior Member
Join Date: Feb 2013
Location: Lincoln, NE
Posts: 265
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Re: Steroid Smackdown Round 3!
Dearest Denise...You Go Girl...Keep your eyes "WAY" up...you've got such a huge heart...don't let it "weigh" you down!! <3
__________________
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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06-05-2013, 04:58 PM
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#11
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Senior Member
Join Date: Nov 2010
Location: Doylestown, ohio
Posts: 334
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Re: Steroid Smackdown Round 3!
Oh Denise u always put a smile on my face. Ty for that.
__________________
DX Sept 30 2010 at the age of 49. Oh crap! 1.5 cm idc, stage 1 grade 3 er/pr+, her2+ no lymph nodes, mastectomy Oct/10. Started 6 rounds of TCH Dec/10 and will continue herceptin until Nov /11 and just started femara.
Stray kitten found my lump while I was playing with it. It is now my pet and my dog is not real happy about that.
Mammo good
last herceptin 11/21/11 YAY
reconstruction 12/09/11
Chapter closed 12/10/11, hopefully, fingers crossed
Bone scan, chest xray, clear
04/27/12 Expander removed, implant put in, ahh sigh of relief, much more comfortable
Sept 30, 2014, 4 years NED
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06-06-2013, 12:37 AM
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#12
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Senior Member
Join Date: Jul 2011
Location: Sydney, Australia
Posts: 473
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Re: Steroid Smackdown Round 3!
Oh yes Denise, those AFL lads are indeed 'athletic'! Great story about your boys (and you) getting into it.
I would just like you to know that if you would like to follow the reigning 'premiers', then you should consider the Sydney Swans. Just to confuse you a little more, Sydney is not a natural town for AFL, as Rugby League is the main code in New South Wales and Queensland, followed by Rugby Union. However, all the states have professional AFL teams (2 in Sydney), and we here have embraced the Swans particularly! So you can imagine that we are very pleased that the Swannies won last year's premiership. (Have you noticed that in Australia we like to add a 'Y' or an 'IE' to a lot of words?!)
Cheers Marie
__________________
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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06-06-2013, 01:10 AM
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#13
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Senior Member
Join Date: Dec 2011
Posts: 585
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Re: Steroid Smackdown Round 3!
((hugs)) Denise. Thanks for being here and just for being you. Down to three mg is awesome...it won't be long now when you will be rid of those horrible pills. Im sending lots of prayers that your scan came out perfect. I was short of breath on the steroids as well.
I think you and I both need to throw away our scales, btw.
__________________
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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06-06-2013, 04:17 AM
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#14
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Senior Member
Join Date: Oct 2011
Location: Geelong, Australia
Posts: 250
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Re: Steroid Smackdown Round 3!
Lol Denise., glad you like the game, it is very fast moving. There are some very nice boys (check out my teams Geelong Cats' Jimmy Bartel and Joel Selwood, lovely young men!). Maybe your boys will play it with their friends and then you can get a team together, you have time for that, in your spare time, don't you! Lol. Now Marie's Sydney Swans maybe current premiers, but they are still newcomers (lol, I think the y have been around for thirty years or so!) so I think thinks it's Geelong' year again this year, we seem to do well every two years.
Anyway, see what's happened, Marie and I couldn't help ourselves, could we? We had to get a dig in about our own team, Amanda will be long shortly, with her two bob's worth!
What I wanted to say was, fantastic news Denise, and throw away those scales, mine don't work either, I think it's a conspiracy!
Love Dawny. ( see the "y" on the end of Dawn, like Marie says. I was born in England, and was quite horrified when people started calling me that!)
Xxxxxxxxx
__________________
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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06-06-2013, 03:03 PM
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#15
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Senior Member
Join Date: May 2010
Posts: 184
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Re: Steroid Smackdown Round 3!
Denise
Your wonderful sense of humor and gentle caring have kept me sane at times and I thank you for that. I would have loved you as a teacher for my kids and your students probably love you too.
I have not needed high dose steroids but I can imagine how horrible it might be. I know what the dex does to me just getting it at chemo. Weight is a frutsrating thing and I have to keep convincing myself that I cannot have the same dream of looking like Jessica Alba and be content to look better than Buddy Hacket! You're probably too young to know who that is, showing my age?
Anxious to go look up AFL!
Prayers to you, Cathy (I already have a "Y")
__________________
3/06 DX stage III er-pr-her2+++ breast, 1+node
age 49 and 364 days
3XAC 4X taxol and herceptin continue herceptin one year
bilat mastectomy w/TRAM
32 rads
9/08 recurrance 4 sternal nodes
mediastinoscopy, able to remove 3
taxotere, carboplatin, herceptin, x6
continue herceptin indefinately
5/10 recurrance in same node/area
mediastinoscopy, removed nodes
added tykerb
27 rads
10/18/10 PET shows inflammation no active disease
8/2011 recurrence one right mediastinal node, xeloda and proton radiation to node.
D/C xeloda due to toxicity
12/5 PET scan clear
2/2012 colon blockage, breast cancer
(never thought it could go there! thought I was constipated)
start abraxane, herceptin, continue tykerb
10/2012 Kidney ablation (renal CA!)
3/2013 CT and biopsy R kidney (BC met to R kidney)
4/4/2013 Begin Kadcyla
7/30/13 Craniotomy cerebellar mets, 1.7cm 3cm
Sept 4-6 post op cyberknife
Sept 23 ablation right kidney (blow up pesky breast ca met)
Oct headaches MRI Oct 10 (only surgical changes ! Yay!)
Short of breath. CT, pulmonary function, echo
New crap in right lung heart good. Pooh!
12/13 DC kadcyla. Begin halaven
2/14 MRI brain NED Yay!
4/3/14 CT mostly stable but breast mets r kidney growing
4/16/14 ablation right kidney again
Continue halaven, tykerb
dc halaven gemzar?
2nd opinion May 14
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06-06-2013, 06:46 PM
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#16
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Senior Member
Join Date: Jul 2011
Location: Melbourne, Australia
Posts: 432
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Re: Steroid Smackdown Round 3!
Well I am certainly pleased about the smack down!
As for your AFL experrience - woohoo - eye candy indeed - they are all so tall and lean and I have to say I am partial to those well toned up arms...
Ending the debate about which team to follow I'd love to suggest my Brisbane Lions but we are currently "rebuilding" (I.e. code for we are playing like crap at the moment). Angus would prefer that you follow the Hawthorn Hawks - they really should have beaten the Swans (sorry Maree ��) last year and a currently top of the table.
In the meantime - may the goo keep reducing.
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06-07-2013, 05:48 AM
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#17
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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!
Okay...
Important things first...as an avid Phillies fan (Major League Baseball), I know all about rebuilding. We've gone from winning the World Series to 'snatching defeat from the jaws of victory' nearly every night, in less than 5 years!
Next important thing...I have always envied people who can add a 'y' to their names! There's no good way to do that with Denise. There have been one or two people who have tested out Neecie on me...but it just doesn't suit. All my brothers and sisters have names that can (and do) add that y...Bobby, Mikey, heck Sally doesn't even get a choice...
Even my own kids get Johnny and Benji here at home. My Mom's name was Dolores, and she hated when family called her Dolly...but I thought it was cool. So the y thing works for me, gals!
Third important thing...I'm going to have to check out the Web for a footy. The sporting goods store clerk here looked at me like I had two heads...then tried to sell me a rugby ball. The nerve!
And now...the smackdown update...
Those of you who have had an echocardiogram can attest...they usually take about 30 minutes. Because of all the scar tissue from my recon, and because I'm part of a study to track the cardio-toxicity of Herceptin treatment...my echos often take an hour. Yesterday, my study took 2 and a half hours! Because of these demon steroids, there is so much fluid packed on my body that it kept reflecting all the soundwaves! They literally could not get images of my heart through all the interference.
Now...this is not to say that I am "heart-less"...they did locate the old ticker eventually...they just had to inject little reflective bubbles into my bloodstream...then re-do each part of the scan. Very Star Trek!
In the end...the results were worth waiting for! My EF was a solid 55%! Woo Hoo! And wait for this, my friends! When I went upstairs for my vitamin H...I weighed in on the same scale they had used on Monday...and have I lost 5 of those pesky pounds I had packed on! I guess my body has finally realized that the steroids are tapering and is releasing some of that fluid I've been lugging around! Yay! Hooray! Five down...45 to go...but hey! At least I'm going in the right direction again! It also had the happy effect of reminding me that MOST of this extra weight is merely water...I won't have to spend months on the exercise bike to get rid of it! Very encouraging, indeed!
Scheduled my 6 month scans of chest, abdomen and pelvis for June 20th...MRI of brain will likely a few weeks later. Truly not expecting anything to light up on the June 20 scans. My body had been "clean" for well over a year...and I haven't had any break from treatment.
I just need that brain MRI to show the necrosis (that's what those tumor board folks call the goo) is/was re-absorbed...and nothing new has popped up to cause trouble. Not quite ready to speculate on that one yet...still cautiously optimistic though.
So much heartbreak here among our friends lately...praying for all of you...
Thanks for checking up on my smackdown progress
With love
Denise
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06-07-2013, 07:19 AM
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#18
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: Steroid Smackdown Round 3!
I have a product under the kitchen sink called something like "Goo Be Gone". Could you use that?
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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06-07-2013, 08:39 AM
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#19
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Senior Member
Join Date: Feb 2013
Location: Lincoln, NE
Posts: 265
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Re: Steroid Smackdown Round 3!
Dearest Denise, yet I'm wondering..."Dolly", I like that as you talked about your mother...I was thinking..."Denny"...?? Just a thought, or even a combination of the two!!
The FACT remains, YOU ARE UNIQUE, one of a kind...name doesn't matter...
It is ALL ABOUT YOUR HEART...Lovin' on all of us!!
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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06-07-2013, 06:12 PM
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#20
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Senior Member
Join Date: Jul 2011
Location: Melbourne, Australia
Posts: 432
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Re: Steroid Smackdown Round 3!
http://www.sherrin.com.au/home
Denise - it must be a Sherrin - if you have difficulty - pm me your details and I will send you one. :-)
__________________
Amanda xx
40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11
Wife to my wonderfully supportive husband of 17 years!
22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old
(L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins.
Fec*3, Taxotere and herceptin*2 - stopped due to secondary diagnosis
June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions
Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo
February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again
August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy!
September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing.
January 2013 - herceptin, carboplatin and Perjeta (compassionate access)
April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta
July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.
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