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Old 01-18-2011, 09:36 AM   #1
Lani
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Thumbs up NY Times article on stage IVs with stats and singling out her2+ breast

cancer for progress in treatment

http://www.nytimes.com/2011/01/18/he...ncer.html?_r=1

ADDED LATER: PLEASE NOTE THAT THE STATS ARE FOR ALL STAGE IV BREAST CANCER PATIENTS AND HER2+ BC PATIENTS ARE ONLY A SMALL SUBSET OF THESE WHOSE PROGNOSIS HAS BEEN IMPROVING AND WILL CONTINUE TO IMPROVE AS BETTER ANTI-HER2 TREATMENTS ARE USED!!!!
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Old 01-18-2011, 11:00 AM   #2
Jean
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Re: NY Times article on stage IVs with stats and singling out her2+ breast

"Danny Welch, an expert on metastasis, says only a few hundred scientists in the world are trying to understand the process. "

We need hundreds of more scientists working on this and we need it today!!!!! Shame on society that it is alway seeking a return on their investment when making research decisons. What better return than a soicety that is able to beat metastasis?

jean
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Old 01-18-2011, 12:29 PM   #3
michka
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Re: NY Times article on stage IVs with stats and singling out her2+ breast

It's a very good article to educate people about cancer.
Although I know the stats, it is difficult to read them. Michka
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08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 01-18-2011, 12:39 PM   #4
R.B.
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Re: NY Times article on stage IVs with stats and singling out her2+ breast

This seems an appropriate thread in which post this. The stats do make difficult reading ^, which is why I had not posted it before.



http://www.ncbi.nlm.nih.gov/pmc/arti...tool=pmcentrez

Improving outcome of chemotherapy of metastatic breast cancer by docosahexaenoic acid: a phase II trial
P Bougnoux,1,2* N Hajjaji,1,2 M N Ferrasson,1,2 B Giraudeau,3 C Couet,1,4 and O Le Floch1,2
Accepted October 19, 2009.


Background:
Breast cancer becomes lethal when visceral metastases develop. At this stage, anti-cancer treatments aim at relieving symptoms and delaying death without resulting in additional toxicity. On the basis of their differential anti-oxidant defence level, tumour cells can be made more sensitive to chemotherapy than non-tumour cells when membrane lipids are enriched with docosahexaenoic acid (DHA), a peroxidisable and oxidative-stress-inducing lipid of marine origin.

Methods:
This open-label single-arm phase II study evaluated the safety and efficacy (response rate), as primary end points, of the addition of 1.8 g DHA daily to an anthracycline-based chemotherapy (FEC) regimen in breast cancer patients (n=25) with rapidly progressing visceral metastases. The secondary end points were time to progression (TTP) and overall survival (OS).

Results:
The objective response rate was 44%. With a mean follow-up time of 31 months (range 2–96 months), the median TTP was 6 months. Median OS was 22 months and reached 34 months in the sub-population of patients (n=12) with the highest plasma DHA incorporation. The most common grade 3 or 4 toxicity was neutropaenia (80%).

Conclusion:
DHA during chemotherapy was devoid of adverse side effects and can improve the outcome of chemotherapy when highly incorporated. DHA has a potential to specifically chemosensitise tumours.
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Old 01-18-2011, 12:40 PM   #5
KDR
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Re: NY Times article on stage IVs with stats and singling out her2+ breast

Yes, Michka,
Let's hope these articles became the past very soon. I can't imagine that my life expectancy is just 26 months. I read something similar last night in Susan Love's book and spent the rest of the night crying. 1-3 years, but then she goes on to say we should never look at statistics, everyone is different. We never get used to it. So, Stage IV ladies, could you please present yourselves again because this week has really got me down about this whole trip. Tell me again, please, something that can shift me back into fighting mode.
Anyway, thanks for posting, Lani.
Karen
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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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Old 01-18-2011, 04:17 PM   #6
DeenaH
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Re: NY Times article on stage IVs with stats and singling out her2+ breast

I was just moved from stage IIIC to IV last week, and I have purposely not looked at stats because I knew they were bad. Reading this article threw me for a loop because I didn't know they were THAT bad. I cried last night after I read it because I can't even imagine that I could die that soon. I feel so good physically. But, with mets all over my lungs, and in inoperable nodes, I know my chances of living to be old are not good unless they find a cure. I would also love to hear some success stories of our Stage IV sisters who are either living with cancer successfully or who have achieved NED after a Stage IV diagnosis. The future is scary all of a sudden.
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April 2010: Started neoadjuvent chemo. 4 DD A/C every 2 weeks, 4 DD Taxotere every 3 weeks with Herceptin weekly.
August 2010: Finished chemo!
August 20, 2010: PET/CT showed no cancer in any nodes, and only a little uptake to the breast.
September 9, 2010: Bilateral mastectomy with immediate reconstruction with implants and Alloderm.
September 16, 2010: Pathology report showed 18/51 positive axillary nodes, 3.2cm tumor. Granual sized cancer found in the fatty tissue between levels 1 and 2.
October 19, 2010: CT showed several spots on lungs and 1 spot on liver. Liver spot is 2mm, lung spots range from 2mm to 4mm. We don't know if they are cancer or not.
12/15/10: Brain MRI clear
1/7/11: PET/CT
1/13/11: Recurrence in lungs. Start Tykerb
5/13/11: Progression in lungs
6/3/11: Lung surgery to get tumors for chemosensitivity testing.
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Old 01-18-2011, 05:16 PM   #7
Sheila
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Re: NY Times article on stage IVs with stats and singling out her2+ breast

Like many other stage IV's here, I also do not rely on stats....if so, I wouldn't be posting right now...instead, I am sneaking up on my 9 year mark....8 as a stage IV, still enjoying every day and every minute...even with the annoyance of continual treatment....always looking ahead!
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Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 01-18-2011, 05:32 PM   #8
Jean
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Re: NY Times article on stage IVs with stats and singling out her2+ breast

Deena and Karen,
Not all size 8 shoes fit a size 8 foot!

Okay - the stats are not the best news - but we have many of our sister who have been stage IV and doing
so for many years. Andi is well over 12 yrs. maybe even 14 yrs. now I think.

Research needs to be multiplied by many more dr. doing research thats for certain, but there are many
ladies who are stage IV and living full lives.

My prayers and support are with you.
Jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
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Old 01-18-2011, 05:50 PM   #9
Lori R
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Re: NY Times article on stage IVs with stats and singling out her2+ breast

OK....thought it was time to chime in and remind everyone that I am stage IV and plan to stick around for quite a while.

I am 40 months since diagnosis as stage IV. These have not been bed ridden, miserable months. I've been to London, multiple family reunions at various places in the U.S, just celebrated by 25th wedding anniversay with a wonderful meal and a glass of champagne. (OK...maybe 2 ...possibly even 3) Fantastic, glorious months.
So....please ignore those statistics...we have so many success stories here. I plan to be one of them...am so far....Lori
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2007
Oct - Diagnosed - Stage IV
5 c.m. IDC - Left Side er/pr- Her2+++
Node + 2/14 - Single Liver Met
Double Mastectomy
Nov - Begin T+H
2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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Old 01-19-2011, 12:07 AM   #10
Lani
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Re: NY Times article on stage IVs with stats and singling out her2+ breast

I am sorry that I mentioned stats in my title. THEY ARE NOT STATS for metastatic her2+ bc, rather for metastatic breast cancer in general

They are talking about ALL Stage IV breast cancer patients.

It used to be that her2s among bc patients had their tumors recur earlier and died in a shorter period of time after first metastasis, according to Dr. Slamon

Now her2+ bc patients are living long enough to get brain mets, and even among bc patients with brain mets her2+ patients live the longest

Please do not focus on stats for "the whole fruit salad" when each and every one of you is a super special type of passionfruit!!!

Her2+ bc is tranforming from a type of bc which is more agreessive to one which has a better prognosis than many other types as long as it gets treatment geared to the her2 amplification.

We are learning more and more as to how the tumors get around the her2 blockage (her3, Egfr, IGFR1, Muc4, truncated her2, etc)

and another article I posted from U of Michigan shows we are discovering how the "metastatic niche" awakens the slumbering cancer stem cells and encourages metastasis

We have lots of brain power, computer power and drive to discover how metastases happen and how to prevent them. It wouldn't hurt to go out and try to meet researchers when you can to motivate them to understand why you are in such a hurry for them to make progress. Putting a face on it helps.
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Old 01-19-2011, 04:33 AM   #11
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Re: NY Times article on stage IVs with stats and singling out her2+ breast

Karen, I was diagnosed with multiple liver mets, the largest 9cm, in Dec 2006 .I have survived with mets for 50 months to date-nearly twice that 26 number. My current cocktail of drugs seems to be pushing back the tide somewhat.There are more options available now than when I was diagnosed so I am hopeful for me but even more so for those of you more recently diagnosed.
Don't let the median be the message!
Trish
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5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004
6 cycles(FEC), Oct 40 rads, Tamoxifen
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oopherectomy, Arimedex
12/2006
liver mets largest 9cm
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Herceptin,
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Abraxane
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Tyk+Herc+Femara
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Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011
Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
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Old 01-19-2011, 04:48 AM   #12
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Re: NY Times article on stage IVs with stats and singling out her2+ breast

"We are learning more and more as to how the tumors get around the her2 blockage (her3, Egfr, IGFR1, Muc4, truncated her2, etc)

and another article I posted from U of Michigan shows we are discovering how the "metastatic niche" awakens the slumbering cancer stem cells and encourages metastasis"

How soon can it be learned enough to help the patients?
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Old 01-19-2011, 06:30 AM   #13
Colleen007
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Re: NY Times article on stage IVs with stats and singling out her2+ breast

I read this article yesterday and it gave me a jolt because I have tried to not pay any attention to the statistics (I passed my 5 year mark as a Stage IV back in October and according to the stats, I shouldn't be here now...happy to say that I am living proof that the stats don't apply to all and I CAN be that 1 in 4 who makes it past 5 years :-).

What I liked most about the article was that it gave a good picture of what Stage IV folks have to live with...it is not just a blip in the course of our lives...rather we live scan to scan and may not get the happy ending that others in our lives will get. In a strange way, however, I feel that I will have a happy ending because I took the time to re-evaluate my life's purpose and have had more blessings that I can count since I was diagnosed (not sure that any of that would have occurred if I was healthy).

Here's to 5 more!
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Diagnosed 10-03-2005 (34 wks pregnant, 38 yrs old)
Lumpectomy Nov-2005. 10/18 Lymph Nodes impacted
Mets to liver, spine & femurs (thus being stage IV right from the get-go)
ER-, PR-, HER2+
Taxol/Herceptin/Zometa started Dec-2005. 11 cycles of Taxol.
Sept-2006: PET/CT scan of mets to liver, spine and femurs - Stable. Activity in R breast & mediastinum (not seen in prior scans).
Navelbine (3 wks on/1 wk off) as of Oct--2006 & continued Herceptin (every 3 wks) & Zometa (every 6 wks)
Jan-2007: PET/CT Scan - Stable. Continued Nav. through March-2007, then Herc./Zom. only after that.
June-2007: PET/CT Scan - activity in mediastinum. Back on Navelbine as of July-2007.
Scanned Quarterly since Oct-2007 - a few small scares, but otherwise stable due to continuing weekly Navelbine, Herceptin and Quarterly Zometa.
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Old 01-19-2011, 08:54 AM   #14
Joan M
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Re: NY Times article on stage IVs with stats and singling out her2+ breast

I read the article yesterday and felt the primary points were that more advocacy and research are needed to prolong the lives of women with stage 4 breast cancer, as we are often overshadowed by research for early stage breast cancer (which I had initially). That's why Metastatic Breast Cancer Day on October 13 each year, now a federally recognized day, was an important move forward for us women with metastatic disease. I've been stage 4 since January 2007. We need to keep promoting research for all breast cancer patients.

Joan
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 01-19-2011, 09:29 AM   #15
Kathy T
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Re: NY Times article on stage IVs with stats and singling out her2+ breast

I have been stage 4 for 8 years with good QOL and am maintaining with T-DM1. I hope to have many more.
Kathy T
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