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10-14-2013, 07:58 PM
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#41
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Senior Member
Join Date: Jan 2010
Location: Thousand Oaks, California.
Posts: 199
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Re: Rest in peace, Mandamoo.
Rest in peace, beautiful warrior.
__________________
Breastfeeding when diagnosed with Her2+ May 2008
Oct 2008 Double mastectomy 22/28 lymph nodes positive
Decline chemotherapy (decision I regret)
Nov 2009 Mets to lungs and bones.
Dec 2009 Start Taxotere and Herceptin, T1, T3 heal completely and lungs are clear, T2 and first rib have lytic lesions. First rib becomes sclerotic. Considered stable.
May 2011, Onc calls progression and I cross over from comparison arm of clinical trial to TDM-1
Brain scan in Sept 2011 showed small tumor in right cerebellum, did Novalis radiation.
Feb 2013 < 1cm tumor in left frontal lobe. Did Novalis in March and latest scan shows no sign of brain metastasis.
Aug 2013 did 36th round of TDM-1 Due to TDM-1 side effects, shortness of breath, and difficulty getting my balance when getting out of bed, agreed with my oncologist to stop TDM-1.
Took a six week break, bone scan showed small uptake on left first rib. CT showed hypodensities in liver (too small to biopsy) and small nodule in lungs (mediastinal).
Started Navelbine weekly. Did one round with Herceptin.
Skipped next 2 rounds, due to neutropenia. Next chemo 7th Nov - have had 3 Neupogen shots, so WBC should look better... Did not tolerate Navelbine well.
December 2013 scans show no sign of active cancer.
March 2014 - currently only on Herceptin - brain MRI clear, PET/CT two nodules in right lung show uptake
May 2014 - stop Herceptin.
Sept 22, 2014 Brain MRI clear :) PET/CT Progression in lungs.
Sept 2014, Xeloda, Tykerb and Herceptin.
Nov 2014 - Decide to take a break from all treatment.
May 2015 - Brain met radiated with Novalis
July 2015 - Have progression in right lung.
Sept 2015 - Perjeta and Herceptin alone after a 9 month break from all treatment.
Nov 2015 - Thoracentesis 1500ml removed from right lung.
Dec 2015 - Two tiny 1mm brain mets radiated in right cerebellum.
Feb 2016 - Thoracentesis 2200ml drained from right lung
Feb 2016 - Stopped Perjeta and Herceptin and started back on Kadcyla as I had no previous progression on it. After 1 cycle of Kadcyla markers begin to drop. On second cycle add Keytruda.
March 2016 - Thoracentesis 1650ml drained from right lung.
April 2016 – Thoracentesis 1500 ml drained from right lung.
June 2016 – CT scan shows progression in right lung, as well as moderate pleural effusion requiring Thoracentesis.
June 2016 – Decide to stop Keytruda, and will do chemosensitivity test through Rational Therapeutics. Plan to continue on Kadcyla for next two cycles.
July 2016 - Start weekly Abraxane with Herceptin. WBRT with hippocampal sparing, Taking Namenda. 15 sessions over 3 weeks.
Aug - Dec 2016 - 2 infusions of Navelbine, very hard on my body and still dealing with anasarca (generalized edema) 1 infusion of Havalen
My doctor wants to put me on hospice.
Dec 23rd 2016 - I am granted compassionate use of Neratanib.
May 31st 2017 - still on Neratinib, feeling good.
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10-14-2013, 09:02 PM
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#42
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Senior Member
Join Date: Jul 2011
Location: ottawa canada
Posts: 367
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Re: Rest in peace, Mandamoo.
Nooooooooooo.
__________________
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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10-15-2013, 09:35 AM
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#43
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Senior Member
Join Date: Dec 2011
Posts: 585
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Re: Rest in peace, Mandamoo.
My computer bit the dust, and I am waiting on Dell to build me a new laptop..still two weeks to go. I came to my mom's today to check on everyone here, and I am so shocked and saddened to hear this news. It's horrible how fast this disease can take over once it gets the littlest bit of advantage. I will sure miss Amanda and her posts. I feel just devastated for the loss and pain her family is enduring...I don't have the words to properly express the thoughts going through my head. Im just sad and so terribly sorry for her family and friends. Prayers for peace and comfort for everyone.
__________________
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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10-16-2013, 05:17 PM
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#44
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Senior Member
Join Date: Nov 2010
Posts: 393
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Re: Rest in peace, Mandamoo.
Oh, I feel like I got kicked in the stomach ... she was such a fighter, fought so hard w/in a slow, bureaucratic state -run healthcare system. to get the best , latest tx's she could find..
her family knows she couldn't have fought any harder. such an Inspiration to us all !
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10-16-2013, 08:46 PM
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#45
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Senior Member
Join Date: Feb 2013
Location: Lincoln, NE
Posts: 265
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Re: Rest in peace, Mandamoo.
I am so sad to hear this...for everyone of us here...her family...knowing she fought so hard...and loved so very much!!! Sending prayers to her family for much needed strength, peace, comfort and love in the days ahead...!!!
__________________
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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10-17-2013, 05:43 PM
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#46
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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: Rest in peace, Mandamoo.
I hope I'm not doing something inappropriate posting this. I saw this on Amanda's FB page and it made me smile a bit. I hoped it would effect you similarly.
Amanda had written to me that she removed her signature because she didn't want her treatments to define her. She sent it to me however.
For two yrs Amanda fought with all she possibly could, added meditation, an acupuncturist, a healer, following everything available in Australia re genomic profiling -- and love. Much love. Always. A recurring theme in all her emails. Always signed, Amanda xx Always thanking me for caring so much. The picture in the link below says so much. Covered in a love rug...
Such a beautiful soul! Australia had a grand celebration of her Amanda's life today. Her husband Brendan and three children, her mum, her brother and many many whose lives she'd touched. All dressed in red, as she requested. With selected music and prayers she'd chosen. A woman of remarkable courage, strength and grace...divacultura: Farewell Amanda - reflecting on life and death.
divacultura.blogspot.com
With my love, as always,
Andi
__________________
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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10-17-2013, 06:06 PM
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#47
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Senior Member
Join Date: Jul 2011
Location: Sydney, Australia
Posts: 473
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Re: Rest in peace, Mandamoo.
Thanks so much for sharing that with us Andi......
xx
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10-18-2013, 02:19 PM
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#48
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Senior Member
Join Date: Dec 2011
Posts: 585
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Re: Rest in peace, Mandamoo.
Thank you for posting that, Andi. Sure made me tear up. I am so tired of seeing this disease steal mommies from their kids, wives from their husbands, daughters from their parents...so much suffering. Amanda was indeed so very beautiful and strong and brave..an inspiration. The loss of her here on earth is just heartbreaking.
__________________
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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10-25-2013, 04:03 AM
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#49
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Senior Member
Join Date: Sep 2005
Location: melbourne, australia
Posts: 267
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Re: Rest in peace, Mandamoo.
It makes me sad that she thinks she failed when she did everything so could. She certainly didn't in my eyes.
__________________
Christine
DX Sept 03 age 40 Stage 2B Grade 3 mastectomy (after 2 prior breast conserving surgeries)
"at least" 2.3 cm 3/12 nodes ER+/PR+ Her2+++
8 FEC. Tamoxifen then Arimidex. Ovaries out.
"late" Herceptin for 2 years (18months after chemo) on HERA trial. finished Herceptin Nov 2007.
Multiple bone mets May 2012 and now liver August 2012.
Abraxne, Herceptin and Zometa.
June 2013 Tykerb, Xeloda and Xgeva
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10-25-2013, 04:59 PM
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#50
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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: Rest in peace, Mandamoo.
I checked Amanda's FB page today. Found this editorial which sheds much needed light on how those of us with metastatic bc feel left out from October's pink madness and focus on survival. Of course, that is the dream of each of us.
Some, sadly, live with bc and with the knowledge that they won't survive.
I have pondered this long and hard for 15 yrs. I do believe that when we KNOW a thing, embed it in our subconscious (without even realizing it) we ensure the outcome unwittingly.
It is my prayer that others will read my posts, especially those in IN SIMPLE FORMULA FOR CHANGING THE FUTURE, which is of course never a matter of mastering our thoughts (even those we are not consciously aware of).
Our attitude and our Assumptions (often while staring at reason and what we deem as reality) requires us to have the faith to believe we are empowered with the ability to rise above what our senses tell us, not to buy into the story that is presenting itself to us and though not sinking into denial we fully embrace and live as who we wish to be. This is a feat I fully understand. The power of outside conditions and circumstances defies us with every breath we take. Yet we must resist and move ahead with fearless faith and confidence.
May we each rise to higher and higher states of consciousness and bring into manifestation more and more of creation's infinite wonders.
MAKE BELIEVE -- GREAT MIRACLES ARE POSSIBLE... KNOWING that what you feel will come to be fact.
God bless Amanda's Soul. I admire her so. I respect her great message to each of us, and thank her eternally.
Our society's make extraordinary warriors feel left out. Failures at their task. We each do the very best we can. Surely Amanda did that and far far more. So many do.
http://www.nbcf.org.au/About-NBCF/Me...e-of-Pink.aspx
Sent with my love,
ANDI
__________________
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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10-26-2013, 07:41 AM
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#51
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Senior Member
Join Date: Apr 2011
Posts: 44
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Re: Rest in peace, Mandamoo.
My deepest condolences to Amanda's family and loved ones. I'm very sad.
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10-28-2013, 11:18 PM
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#52
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: Rest in peace, Mandamoo.
I'm just grief stricken! How unbelievably sad knowing Amanda is gone she is missed. Gods blessings to her family and may the peace of our Lord be with them.
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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