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04-22-2013, 08:55 PM
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#1
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Senior Member
Join Date: Jul 2011
Location: Melbourne, Australia
Posts: 432
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More Progression
Hi Folks
No other way to put spin on it - wish I could like NEDenise! I have imagined that I have sarcoidosis, continually have my scans get mixed up with someone else's but alas I think I have to come clean with myself!
So TDM1 didn't work for me and I got compassionate access to Perjeta - we decided to try it with Carboplatin. I had scans today - 4 months down the track - significant progression. 15-20 new spots in lungs, new mediastinal nodes and spreading further up neck but not big enough to cause problems. Existing spots some the same others bigger - overall 30% progression of disease load.
We have a plan - I will keep on Perjeta and Herceptin and swap to weekly Abraxane. There are numerous cytotoxics to try yet but as nothing has really worked for me previously I am reluctant to keep gambling with likely little benefit.
If you meet me in the street you would think I was such a healthy 40 year old apart from the niggly cough. I can still pass people on my morning walks and breathlessness is not a problem. It is difficult to believe we started talking about end of life care today. My son only started school 3 months ago.
I naively have always thought I would get better - that I would be one of the miracle stories despite the odds being stacked against me. I am fast starting to lose that faith. I cannot yet fathom that I am at the end of the road. I do so much to heal my body. I seem so healthy - despite 2 years of chemo, I still menstruate, I have a full head of hair, clear skin and bright eyes.
Can I regain hope?
__________________
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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04-22-2013, 09:53 PM
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#2
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Senior Member
Join Date: Sep 2012
Posts: 111
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Re: More Progression
Manda, you are amazing. I have hope for you - You will turn this around.
The abraxane will be just the thing.
I am sending prayers too...
Rachael
__________________
7/30/2012 Diagnosed with metastatic breast cancer
8/3/2012 CT scan mets to liver (major!!), lungs, spine, and skin
8/8/2012 Biopsy results: invasive ductal carcinoma
ER+/PR+/HER2+ amplification 4.8 (whatever that means)
8/13/2012 Brain MRI (clear); bone scan verified CT scan
8/14/12 started Taxotere/Carboplatin/Herceptin, 2 rounds (added Neulasta after 9/4 treatment)
9/4/12 CA 15-3: >3000
9/15/12 CA 15-3: 840
9/15/12 started Taxotere/Perjeta/Herceptin, 4 rounds (no Neulasta)
10/29/12 CT scan showed dramatic improvement in all areas - largest liver met 2.5 cm, largest lung met 10 cm
12/17/12 Started Perjeta/Herceptin, 2 rounds
12/17/12 CA 15-3: 17 Yay!!!
1/21/13 CT scan showed improvement - largest liver met 1.9 cm, largest lung met 2 mm
1/29/13 CA 15-3: 12 Started Herceptin only
3/12/13 CA 15-3: still 12 yay!! Back to Perjeta/Herceptin
3/29/13 CT scan more improvement - largest liver met 1.2 cm, some lung mets disappeared!
3/7/14 started Tamoxifen
6/27/13 - 1/2015 CT scan stable
Began a diet of only single ingredient foods and went nearly NED excepts for some tiny lung spots - ask me if you want to know more...
1/2015 - 1/2017 CT scan stable
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04-22-2013, 10:32 PM
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#3
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Senior Member
Join Date: Oct 2011
Location: British Columbia, Canada
Posts: 139
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Re: More Progression
Amanda,
I am so, so sorry that this has happened. You DESERVE to have some regression! Is your medical team absolutely sure that hormones aren't part of the driver? What about metformin? Do you see an integrated doctor? What about hyperthermia?
You are doing so much and from your signature you haven't been on something like Abraxane for awhile, so I hope it works along with the Perjeta and Herceptin to obliterate the spots and nodes.
I'm enveloping you in a huge hug and please, please do not lose your faith.
__________________
Dx Age 47 July/09 Stage 2B/3
Left Mast. Aug 09- 1 of 3 positive nodes in axillary dissection (yes only 3)
ER+ 90%, PR+ 20%, HER2+++
4 x AC, 4 x Paclitaxol and H (Neupogen for 7 cycles), Herceptin complete Nov 10
Mar–Apr 2010 25 Rads
Apr 10-Oct 11- Tamoxifen
Oct 11 – 3 cm met to sternum
Oct 11-Letrozole for 3 mths, start Clasteon-bone remodeller
Nov-Dec 11 - Happy 50th Birthday -20 rads to sternum
Jan-April 2012 Taxotere/Herceptin-6 cycles (Neupogen for 5)
Herceptin every 3 weeks-Letrozole added Nov 2012
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04-23-2013, 03:39 AM
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#4
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Senior Member
Join Date: Jul 2011
Location: Melbourne, Australia
Posts: 432
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Re: More Progression
Thank you.
I have had my lung biopsied and have no hormonal involvement. The thinking is I am not likely to benefit from metformin - I think it is due to my body type etc... But I will ask the question again.
My biopsies have confirmed that I am still her2 positive and have her3 expression as well, I also have a p53 mutation. My most prolonged response has been when a pi3k inhibitor has been included in the mix - affinitor. I do not have a p13k mutation.
I have only ever had two treatments with a taxane so perhaps this will help.
I see a traditional Chinese medicine dr and have included many integrated elements in my healing. In Australia integrative Drs are difficult to come by - they exist but are considered alternative rather than truly integrative unfortunately and they do not work together with oncologists and vice versa. I haven't tried hyperthermia - I have looked into some German clinics but they are a very long way away from home and my children as a long shot.
My oncologist is wonderful and I have asked her to look into some more options including neflinavir and kevetrin (phase 1 trial of p53 drug) - she has told me never to apologise for having hope and that she has not given up and that I am amazing and she will keep working to keep it that way...
Right now, I feel good apart from a niggly dry cough, I kicked the football for 45 mins with my son this afternoon, I do most things I always have - while I am breathing there is hope.
__________________
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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04-23-2013, 05:11 AM
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#5
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Senior Member
Join Date: Jul 2011
Location: Sydney, Australia
Posts: 473
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Re: More Progression
Oh Amanda, I'm sorry that you haven't had the response hoped for from the Perjeta. I'm an Abraxane chick (getting shrinkage again from it at the moment), and it is synergistic with Herceptin - not sure about Perjeta, but gee I'm going to hope it's a great combo, and you trailblaze for the rest of us here with that combo.
Your overall health will always be a huge bonus in getting through this, and I would love to run into you in the street, or kick a ball with you, or get over-taken by you on a walking track!
And with regard to your question about regaining hope, I believe yes you can.....
Marie xx
__________________
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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04-23-2013, 06:13 AM
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#6
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Senior Member
Join Date: Nov 2010
Posts: 186
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Re: More Progression
Amanda, my heart goes out to you. When will they scan to see if the Abraxane is working? There are so many different kinds of tumors, that might just be the combo you need. You say you've only had a couple of taxanes--was taxol one of them?
Interesting that you have a P53 mutation - is it BRCA 1 or 2? Kiri has a mutation, a p.D7E variant that she inherited from my husband. Its "clinical significance remains unclear." I wish they would do more investigation along these lines. The kevetrin trial sounds promising.
Keeping you in my heart and prayers. With your energy and great physical condition, you remind me of my daughter, and also a dear friend who has been living strong with Stage IV for 25 years. Always keep up hope.
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04-23-2013, 06:45 AM
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#7
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Senior Member
Join Date: Feb 2012
Location: Ontario, Canada
Posts: 115
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Re: More Progression
I agree! The abraxane will be the drug for you.
Yes, you can regain hope. Yes, yes, yes!!
I try to tell myself that everyday.
I'm sending you some BIG hugs from one young momma to another.
Jill
__________________
[
Feb 2013 - NED
Mar 2013 - thought I had progression, watching brain.
April 2013 - GOT MARRIED!!!!
May 2013 - looks like no progression, but necrosis and bigger.
Oct-Dec 2013 - Avastin tx
Nov 2013 - MRI shows necrosis shrinkage!!!!
Jan 2014 - Lepto Mening. disease found
Feb 2014 - WBR
March - BLAHHHH
April 2014 - Liver mets found
April 2014 to present - Chemo again, whooohoo. Fun!
July 2014, scans look good.
Stay on Perjetand hercertin.
Nov. 2014 more lepto-mening disease more WBR.
Feb 2015 more lepto-mening disease in spine and neck. More radiation.
Start on TDM1 no more Perjeta stay on herceptin
March 2015 more radiation in my thoracic area, more lepto-meningial disease
April 2015 trying to walk again.
[/SIZE][/FONT]
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04-23-2013, 07:10 AM
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#8
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Senior Member
Join Date: Jul 2010
Location: South Jersey
Posts: 516
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Re: More Progression
You are amazing. You and yours are in my prayers.
- Penny
__________________
...but he said to me, “My grace is sufficient for you, for power is made perfect in weakness.” I will rather boast most gladly of my weaknesses, in order that the power of Christ may dwell with me. (2 Corinthians 12:9)
Penny
July 2010 IDC grade 3 stage 3 er-/pr-/her2+++, BRCA2
Skin mets 11/10
1/12/11 Surgery path - complete response
Rads 2/11-4/11
Liver mets 11/11 now stage IV
Xeloda & Tykerb 12/11
Allergic reaction to Tykerb 12/11
Xeloda only 12/11
Added herceptin January 2012
Progression February 2012.
Started Veliparib (parp inhibitor) trial 3/5/12.
4/30/12 Liver met shrunk in half! Praise Jesus!
6/18/12 another 25% shrinkage, down to @3x3. Thank you, God!
8/8/12 Brain MRI - clear! Praise to You, Lord Jesus Christ!
8/27/12 Thank You, God - another 20% decrease in liver met! Now @ 3.2x1.9.
10/5/12 stable-ish
11/21/12 allergic reaction to carboplatin
12/10/12 stable & progression
12/31/12 liver ablation
2/6/13 ablation successful but new tiny mets in liver. May or not be cancer.
Another ablation scheduled 2/28/13. Cancelled.
2/20/13 started taxotere & herceptin. Pretty toxic. Oncologist says start tdm1 4/3/13. From her lips to God's ears. Praying for no allergic reactions/adverse side effects.
3/28/13 increase in liver mets - number & size
4/3/13 started TDM1
6/25/13 Praise God! Scan shows only one viable lesion and it's smaller.
10/8/13 MRI shows 1 large and two small tumors.
10/11/13 Ablation of tumors. It's in God's Hands.
10/23/13 Jesus and TDM1
12/19/13 Started trial of palbociclib & herceptin after scan showed growth of liver tumor and a questionable spot on rib.
2/6/14 CT scan - previous suspicious spot on rib probably damage from radiation - Praise God! MRI - over 200% growth in cancer in liver.
2/19/14 started Navelbine, Perjeta, & Herceptin combo.
5/2-5/4/14 hospitalized with very high liver function numbers, plus skin and eyes are yellow, plus urine is orange. Feel ok, so doctor not sure if liver failing due to cancer, chemo, or infection. Hospital gets numbers to go down and sends me home. MRI done in hospital reveals cancer shrinking - praise God!
5/6/14 - 5/8/14 hospitalized with no white blood cell count. Released when they go back up, @ 6 days after doctor gave me a neulasta shot.
5/16/14 - informed blood cultures done in hospital are back and that I contracted hepatitis e. Have to take ribavirin (anti-hep med) until liver function numbers are back to "normal" before re-starting chemo. Will probably go on veliparib and temodar this time.
5/26/14 - my birthday - GI doctor informed me that the hepatitis e was completely gone - I didn't even need the anti-viral meds! This is a miracle from God!
5/28/14 - started veliparib and temodar (compassionate use)
8/18/14 MRI shows 90% growth in liver tumors
8/20/14 start Perjeta, Herceptin, & Navelbine. Thanking & giving Glory to God for each moment.
9/22/14 - 9/24/14 Hospitalized with 102.2 fever and neutropenia
11/13/14 ER for high fever and fast heart rate. Got both down with IV antibiotic and fluids. Sent home same night. Thank You, Lord!
12/2/14 MRI shows progression in liver. Grateful to God that I still feel good.
12/11/14 Simulated SIR-spheres. Successful. Real thing (1st lobe) scheduled for the 23rd. Also starting Xeloda on 22nd for 2 weeks because it's synergistic with the spheres.
12/23/14 SIR-spheres in left lobe of liver. On Xeloda 12/22/14 - 1/4/15.
1/7/15 Receiving Perjeta & Herceptin while awaiting next course of action.
2/9/15 SIR-spheres in right lobe of liver. On Xeloda for 2 weeks (started 2/8). Still on Perjeta & Herceptin. Don't know what's next for me. :-)
3/25/15 Final read on MRI report - there are new and multiple lesions in both lobes of liver. Sigh. Praise God I've made it this far!
4/1/15 Started Gemzar & Herceptin. 1st week G&H, 2nd week G only, 3rd week off. Thank You, Lord, for this option.
4/15/15 Labcorp - liver enzymes in 200's. Appointment 4/22 with oncologist to discuss. Also, "radiation recall" in previously treated area? Very itchy. Need to discuss.
4/22/15 Enzymes came down. Received reduced dose of Gemzar only. No herceptin. Will get labs at lapcorp next two weeks since taking break for vacation purposes. Treat radiation area.
5/9/15 ER for severe abdominal pain. Constipation. Sent home with meds and advice to follow up with oncologist regarding jaundice and bilirubin.
5/11/15 Hospitalized for rising bilirubin and jaundice. CT scan reveals larger and more constricting tumors in liver.
5/13/15 Met with my oncologist. Bilirubin came down. If still down by Monday, I'll get chemo. If not, than I guess I'll see you all in Heaven. Praise God. Please pray, pray, pray.
5/18/15 Bilirubin jumped up. Trying lowered dose of Ixempra, with Herceptin. Oncologist is surprised that I'm functioning so well, given the high bilirubin. I have anywhere from 2 weeks - 2 months to live.
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04-23-2013, 07:14 AM
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#9
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Re: More Progression
Amanda, I'm prayin' and believin'!
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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04-23-2013, 09:26 AM
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#10
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Senior Member
Join Date: Jan 2013
Location: Irvine, CA (Southern CA)
Posts: 414
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Re: More Progression
Hi Amanda!
I'm new and so proud of your post. I can't imagine being so young and facing these fact. But we all know people live long happy lives despite this. Or we love the days we have. I'm at that point.
You're in my prayers and I'm giving you a big cyber hug. You might not feel it but I did - I'm still doing chemo and home in bed - first day off from work b/c of it. I understand strength but now appreciate rest and recovery.
Your journey is far from over. There are options and I'm going to be checking up on you. If you don't mind 
__________________
Julie
Live in Orange County, CA
Diagnosed with DCIS Oct. 2012
Bilateral Dec. 19, 2012
IDC, ER/PR-, Her2+++, Grade 3
Stage IIIa
15.6 cm
4/14 nodes + macrometastases
First thing each morning, I try on my bathing suit. Then, nothing worse can happen the rest of the day.
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04-23-2013, 12:44 PM
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#11
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
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Re: More Progression
Running a search through some non-published stuff that not many have access to. I will get back to you in a private email tomorrow. I am not sure any of this will help, but i have to look and see.
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04-23-2013, 12:49 PM
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#12
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Senior Member
Join Date: Apr 2011
Location: Port Hedland, Australia
Posts: 382
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Re: More Progression
Amanda,
I'm so sorry about the scan results I so wish they were somebody elses' too - like cruella De Ville (just watched 101 Dalmations with my little girl!)
Good luck with your new treatment plan - you're onc sounds like a keeper for sure.
Prayers
Jenny xx
__________________
Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy
Praying the Herceptin is as good as its hype!!
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04-23-2013, 01:05 PM
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#13
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: More Progression
Dear Amanda,
I am praying that Abraxane will be your magic bullet. You are a Warrior Woman, and I hope that things turn around for you quickly. Everyday is a new day - with a promise of good things.
Sending lots of love and hugs from a fellow commonwealther.
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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04-23-2013, 06:14 PM
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#14
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: More Progression
Amanda,
Your post has touched me deeply and I so wish I could beat that cancer's snot out of it for you! Please never give up hope!
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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04-23-2013, 09:26 PM
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#15
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: More Progression
Amanda,
Your amazing physical and mental strength is going to help you tremendously in the upcoming battle. I'm certain your doctor will find the right treatment soon. Hang in there. We are sending you good vibes.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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04-23-2013, 11:35 PM
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#16
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Senior Member
Join Date: Oct 2011
Location: Geelong, Australia
Posts: 250
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Re: More Progression
Amanda, I am sorry to hear this. Damn cancer! It is time you got a break, hopefully Abraxane will give that to you. I didn't find it an easy ride, but it got me to NED, so I have my fingers and toes crossed for you that it works well. It just doesn't seem right that you are feeling and looking good still, does it? At times I have hoped that it is all a mistake also.
Hugs to you
Dawn xxx
__________________
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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04-24-2013, 12:45 AM
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#17
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Senior Member
Join Date: Apr 2012
Location: Melbourne, Australia
Posts: 494
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Re: More Progression
Dear Amanda,
So sorry to hear these latest results, but I know you can't lose hope - not when you have those gorgeous kids to buoy you up! Abraxane seems to work well for many, and your new combination sounds good.
Will be thinking of you..... Pam
__________________
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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04-24-2013, 05:54 AM
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#18
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: More Progression
No! No! No!
Can you hear me screaming?! This cannot be happening!
Amanda, my dear friend...
no doubt about it...this SUCKS! Up...down...every-which-way-from-Tuesday!
The injustice of this whole mess is staggering. So many bad people in the world get off scott free...and terrific people like us...get screwed.
And, what about our kids?! What the hell did they ever do to deserve this nightmare!? Sh%#! Sh%#! Sh%#! I'm not even sure whether this makes me more sad...or angry. I bet you're having trouble deciding that too.
Honestly, you may have noticed...I don't do sad very well...so I think I may already have jumped to angry...sorry about the potty language.
But...and I hope this doesn't sound too "Pollianna-esque"...
without hope...
the anger is wasted...and we can't have that!
Rage against those lung mets! They hate that.
The fact that you are still feeling so well physically tells me that your body is not giving up hope. That alone makes me think this story is a looooong way from over. So, let's cut your brain and spirit a break for a bit...they deserve a chance to wallow in despair...but not for too long...or they might get stuck there...and that would be bad...very baaad.
Now...45 minutes of kicking a football...girl, I'm not exaggerating when I tell you that 4 to 5 minutes of kicking a football would have me wheezing and panting...you are amazing to me. Not just because you're able to stay active, but because, whether you're doing it on purpose or not, you're keeping life normal and happy for your family. That's hope in it's purest, most selfless form...IMHO.
And, the fact that you're already exploring new treatment options, and making plans also tells me that hope is still alive in there...it's just kinda tired right now. BTW...end of life care discussions do NOT mean end of life is near...it just means you are planning. Ted and I have had those discussions many times over the years...for both of us...long before BC reared its ugly head. Everybody should have a loose plan in mind long before they ever need it.
So...my expertise with lung met meds is non-existent...but having said that...you mentioned that your cancer hasn't had much experience fighting taxanes. My cancer hated TAXOL! And so did I...it was absolutely the hardest 8 weeks of this whole nightmare. I actually cried (something I've only done twice since this all started) and asked the onc if I really had to have the last treatment. It was misery. Painful, exhausting, misery. But, alas...it seems to have worked.
If my opinion matters at all...I really, truly don't think someone who is still feeling so well physically can be "at the end of her road" yet. It just doesn't seem like that can be true. I agree that the progression news is not good...but the fact that you are still so strong makes me think that treatment options still untried are the ones that will stop things in their tracks.
Realistically, neither one of us may ever be NED again...but that doesn't mean we can't see our kids finish high school...get married...I'm even hoping to cuddle grandchildren someday.
So...let's take a collective deep breath. Hug our kids...and jump back into the fight. Remember my friend...hope doesn't mean you're happy...it just means you're willing to keep trying...something I don't think you'll be ready to give up on for a good long while yet.
Sending you all the love and extra hope I have laying around! Prayers and healing too!
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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04-24-2013, 06:25 AM
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#19
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: More Progression
Amanda,
I, too, have been deeply touched by your post.
And I, too, am thinking that your mental attitude and physical strength will help you in this battle. I am also praying and believing.
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04-24-2013, 11:23 AM
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#20
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: More Progression
Sounds like both you and your oncologist are an amazing team. I love your fighting spirit.
You deserve a miracle. Hoping Abraxane will take you to NED!
__________________
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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