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07-16-2013, 09:42 AM
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#1
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Senior Member
Join Date: Mar 2009
Posts: 508
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Not good news!
Just back from hearing that my latest mri indicates a single, small met on my liver. Wavering between tears and numb in the moment. I suppose I'll hear from my oncologist in Philadelphia soon and will probably be traveling to make a plan. I am am absolute mess right now, and am having a heck of a time grabbing for any hope.
Barb
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07-16-2013, 09:45 AM
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#2
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: Not good news!
Barb,
I know those with much more experience about this issue will come flooding your way. Try to stay strong as this is one small met that I am sure your oncologist will have a good plan for you. In the meantime I am thinking of you. Stay strong.
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07-16-2013, 09:57 AM
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#3
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Re: Not good news!
Barb
I've been there. One single small met? You'll get rid of that quickly, I'm sure.
I will be thinking of you.
Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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07-16-2013, 10:16 AM
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#4
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: Not good news!
Oh Barb!
I wish I could be there and give you a big hug!
Why is it that we just can't seem to catch a break?! I know, as Karen just posted, one small liver met won't be a huge deal in the scheme of things. But... really? you have enough to deal with! I'm putting this on my list of things to ask about when I get through the pearly gates someday.
Praying for a good plan, and a quick end to this chapter of your life... but more importantly for you to find peace and courage to fight on... the way you always have!
Love and a big hug, my friend...
Denise
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07-16-2013, 11:08 AM
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#5
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: Not good news!
I hate that you have a liver met, but I like the description "single and small".
It's discouraging, but treatable. Others have gotten to NED. It just sucks that you are facing more treatment.
Praying for you to get through this rough time, and wishing for a quick transfer 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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07-16-2013, 11:43 AM
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#6
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Not good news!
Barb I'm so sorry and without wanting to give you false hope I felt I should mention they told my friend the same but when she had it biopsied it was a benign lump that is fairly common and many people have them but never know, we of course get so many scans and tests it shows up. I just wanted to say keep an open mind and if its definate you'll get rid of that asap with all these good vibes and prayers winging their way to you. x
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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07-16-2013, 11:52 AM
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#7
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Re: Not good news!
I am so sorry, and although the docs probably know what they are talking about, there's always a chance that it is benign. Just hearing those words is so scary. But: It ain't over till the fat lady sings! Breathe in, breathe out. Take it one step at the time.
One small met is treatable and over the 9 years I've spent in online breastcancer communities I've seen people go back to NED frequently.
Sending hugs and healing vibes. And a virtual shoulder to cry on.
Love
Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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07-16-2013, 12:14 PM
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#8
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Senior Member
Join Date: Oct 2011
Location: British Columbia, Canada
Posts: 139
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Re: Not good news!
Thinking of you and giving you a virtual huge hug! You have made it through some tough times and will continue to do so-time for a break!
__________________
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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07-16-2013, 12:15 PM
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#9
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Senior Member
Join Date: Dec 2012
Location: Attica, IN
Posts: 371
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Re: Not good news!
I had a cat scan on my liver twice and then they did an Ultrasound on it too. They decided it was a Hemo something a blood vessel type thing that people have from birth and it is common but most never know they have one. SOOO maybe they will do another test and a little small met will be a little small blood coil.
__________________
myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant
9/2012 Pre-adjunctive TCH chemo.
12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.
12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+
2/27/13 6 weeks of IMRT radiation finished
2/2013 Started on Tamoxifan 5 years.
8/2013 will take last Herceptin, 17 treatments total every 3 weeks.
BRCA1 & BRAC2 - Negative
August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.
3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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07-16-2013, 07:33 PM
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#10
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Senior Member
Join Date: Apr 2012
Location: Melbourne, Australia
Posts: 494
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Re: Not good news!
Dear Barb,
Sorry to hear your news, but wishing you the speedy establishment of a treatment plan and great results.
Best wishes..... 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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07-16-2013, 08:16 PM
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#11
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Senior Member
Join Date: Oct 2011
Location: Geelong, Australia
Posts: 250
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Re: Not good news!
Best wishes Barb
__________________
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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07-16-2013, 08:55 PM
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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: Not good news!
Oh Barb, sorry that you have to go through this horrible emotional strain. But... it's right what everyone is saying here - it's small, and it's just one, and at worse, if it isn't benign, so much can be done to rid this pesky visitor.
Sending you hugs..
Marie
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07-16-2013, 08:57 PM
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#13
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Senior Member
Join Date: Feb 2013
Location: Lincoln, NE
Posts: 265
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Re: Not good news!
I'm so sorry to hear this Barb...know that I'm with all the other gals...praying for you and asking God to give you strength and peace!! 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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07-16-2013, 09:53 PM
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#14
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Re: Not good news!
Linn 65, hemangioma is what I think you had. I had that too. Caused quite a scare, but turned out to be nothing. Hoping that is the case for you too, Barb. Hang onto that hope tight.
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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07-17-2013, 12:20 AM
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#15
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Senior Member
Join Date: Dec 2011
Posts: 585
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Re: Not good news!
Im really sorry, Barb. Big hugs to you. I pray that you get some comfort and peace of mind. That one single met in your liver doesn't even stand a chance. I had one living there for over a year and didn't even feel it. Now it is gone, and yours will be too. Know that we are all here for you, and sending you so many cyber hugs and smiles and bunches of positive energy.
__________________
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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07-17-2013, 05:09 AM
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#16
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Senior Member
Join Date: Mar 2012
Posts: 61
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Re: Not good news!
Prayers and hugs. Listen to these wonderful ladies with their infinite wisdom. Right now you are still information gathering!
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