Calling all stage iv sisters

[waterdreamer]

Hi, I have been stage IV since late 2009.
I go for a brain MRI on Wednesday, and a CT next month.
Life is better than ever, and my quality of life is great.
We have lots of options, eat well, exercise, only work on relationships that nurture you, and help you heal.

[Lauriesh]

HI, I just wanted to update my stats. I got the results of my pet scan today and I am still Ned.

I have been Ned for 16 months now.



Laurie

[mamacze]

WHOO HOO! You go girl! Nothing beats a good long dance with NED!
Enjoy every minute and thank you for updating us with this bucket full of hope!!

Love and hugs,
Kim From CT

[Jackie07]

Congratulations! Laurie.

Waterdreamer, how did the MRI go? [I'd presume 'No news is good news'?]

[Jackie07]

Saw this nice article in CancerConnect:

http://cancerconnect.com/groups/brea...-breast-cancer

One woman shares some hard-won wisdom from years of living with metastatic cancer—and encourages laughter along the way.
by Teri Cooper
Borrowed time—technically, that’s what I’m living on. Diagnosed a second time with Stage IV breast cancer metastases to brain, liver, lung and bones, research told me I had two years to live. Fortunately for me, new treatments and good doctors have kept me alive beyond the two years and have inspired the hope of many more. The reality is I can still get hit by a bus tomorrow regardless of my cancer diagnosis, so how has a cancer diagnosis changed my perspective?
For me cancer has been both a blessing and a curse. It has allowed me to get back to things I love, like painting, which is the most relaxing and gratifying thing I can do for myself. I also keep busy with civic groups, ballroom dancing classes, seeing friends, and writing; in other words, “living my life.” In my journey the important thing has been to focus on what I really love and to make time to do it…like traveling and eating ice cream for breakfast! Cancer has taught me what is important to me and how I want to live the rest of my life, regardless of how long it is.
I have also learned that though I haven’t chosen the journey I’m on, I can choose to share the discoveries I’ve made along the way. In some small way, these experiences may help someone else struggling to find their path.
My hair, or the lack thereof, has taught me more than I could have imagined. When I was diagnosed the first time, I started to prepare for the road ahead: I spent a fortune on a wig made of real hair only to find it hot and uncomfortable. In its place, on hot days, I would wear a scarf, and people would inevitably recognize the telltale “cancer coif.” In fact, while out shopping one day, a woman came up to me and identified herself as a fellow survivor: “I recognize that hairdo…I had that too!” She hugged me, and instantly I felt part of a sisterhood.
When I did choose to wear my wig, I found that wearing a wig is very different when you have hair and when you don’t. I found salvation from the irritation the wig caused my skin by placing paper towels between my scalp and the wig to form a cushion to the scalp and absorb the perspiration. (If paper towel manufacturers only knew how thankful I was for the help!)
And finally, having found a wig that is not uncomfortable—it’s synthetic, well-aerated, and looks very natural—people now approach me to ask where I get my hair colored or just to compliment me on my hair. I pause before I answer, but I guess it is mine since I bought it—online, of course!
Since those first days of wig shopping and hair dilemmas, I have finally lost all of my hair. The eyebrow issue was easily solved with an eyebrow pencil, but the trick was finding the eyebrow pencil with the brush attached. Penciling the brow in a shape I liked and using the brush to soften the lines created a more natural look. As for lashes, boy am I glad I had tattoo eyeliner years ago. At last count, I had about five lashes on each eye. (Adding insult to injury, when they fall out, they fall into your eye.) Arm and finally leg hair is gone too. It had seemed so unfair to have to shave my legs and armpits when I had no hair on my head. Now there is equity! On the bright side, I consider how much money I save on hair care products and hair removal.
And yes, years of teasing my husband about being bald finally caught up with me; there I was, post-chemo, with less hair than him. We now joke and say our hair color is “clear.”
Coming to terms with hair loss—and learning to laugh along the way—has been a journey in itself; coping with my prosthetic breast has provided a whole new set of lessons…and laughs. Initially, I went to get my prosthesis and the necessary bras only to end up feeling like I had missile-shaped breasts. I switched back to my regular bras after my incision healed, at first sewing a pocket in for the prosthesis.
After years of doing this I got lazy and would just place the breast in my bras, against the skin, which provided a few memorable moments, like the day I was vigorously digging a hole while gardening and saw what looked like a chicken breast in the dirt. Puzzled, I went to move it with the shovel. Thank goodness I recognized what it was before I touched it: my prosthesis had popped out unnoticed. I stood in the yard laughing at myself; I’m sure the neighbors thought I had lost my mind!
The comic moments that the prosthesis provided were joined by genuine discomfort as I tried to develop a comfortable way to “wear” my new breast. Now, though I still wear my usual bras, I have found a solution for the discomfort of the prosthesis against the skin: I buy a pair of ankle socks and put one on the side that touches the skin. For me this works—as long as I am not doing anything like digging!
Helping my family come to terms with my illness and managing the emotional aspects of this journey has not always been as easy as having a good laugh, but we’ve still managed to find our way. I am a caretaker. I find it eases my mind to look after others, and I’m calmed knowing everyone else is going to be fine. My husband and I talk frequently about cancer and mortality—fortunately for me, he is a psychologist and a good man. My son can question my husband about the cancer without feeling uncomfortable. My stepson calls regularly. I send e-mail updates to my sisters, cousins, and friends because it allows me to give the information without getting emotional. My mother died of AML a few years ago, and my father is a cancer survivor and shows me every day how important it is to enjoy your life. Both have provided good models not only in how to live but in how to say goodbye. Ultimately, I have my faith, and I feel immense support from friends and loved ones.
Managing my hair loss and my prosthetic breast has provided me with just a few of the discoveries I’ve made on this journey, and knowing that my loved ones are taken care of has given me peace at home. The view from the IVth floor is not always pretty, but I hope by sharing what I see, I can help others and maybe share a laugh along the way. There is still joy and hope in my life, and I wish the same thing for all of my fellow survivors.
Outside the Box of a Metastatic Cancer Diagnosis
Remembering that there are exceptions to every rule keeps hope alive in the face of Stage IV breast cancer.

[KDR]

I have to pin a gold medal on AndiBB. Our Olympian.
Love
Karen

[NEDenise]

Jackie,
I guess it's time for me to join this elite group of beautiful warriors.
Initial diagnosis Feb 3, 2011 ER/PR- Stage 3c
Stage IV diagnosis Jul 23, 2012

I leave the months and years to you...your much better at than I am.
Denise

[Delaney]

I got clear brain mri today. Battle on to deal with skin and lung mets, onto Myocet, then TDM1 if that does not work. Really only got six week break between Early Stage 11 and incurable Stage 4. BooHoo

[Pray]

Nancy L. I m so sorry you are back at the fight. Your in my prayers. Gods blessings to you.

Dense, I couldn't be more proud to know you and consider you a goto friend. Being dx. yesterday and declared your status today! You are so much younger than me and so unbelievably strong!

Delaney, How wonderful for you with the MRI! One down! Gods blessings to all of you inspire me so! I'm sure everyone else her also! Peace My Friends

[NEDenise]

Yay, Helen!
We Irish ladies are tough!!
So happy to hear your great news! You inspire me to fight on!
Hugs
Denise

[Ellie F]

Denise, really glad you're back on the board after a horrible shock. Pleas let us know how your consultation and treatment plan goes as we care a lot and want to be there for you.

Nancy, sorry to hear that you need to change your herceptin/ tykerb combo but I am sure you will soon be back to NED. I remember you posting that Dr Slamon was your onc so I know you will receive the most current options available and the best advice.

Delaney, really very glad about your brain MRI especially as you are only a little bit of water away! I pray that you can now get these other mets under control and especially hopeful as I didnt know T-DM1 was available in Ireland. Let's hope England catches up soon.

Ellie

[Delaney]

TDM1 not available in Ireland just yet Ellie, but my oncologist tells me its on the way - soon - and its so very welcome, we are talking Autumn!!!!!!!!!!!!!!!

[Jackie07]

Current stats:
Total 122 members* and 555* years (and still counting) as of August 26, 2012
@ - members gleaned from other threads
*Including the founder of this group, Christine ((1990) 1999 Chest Brain NED 2001~), those who have posted on this thread, and members gleaned from other threads

[Introduced to one of our new members this thread which Jean had started in January. Then I noticed SoCalGal's tally (145 years for all 33 members) back in March. Thought I'd double check and add the ones after her posting. And I came up with 220 years and three months. (60 members* and 284* years as of July 9, 2011.) And it suddenly downed on me that I have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my oncologist thought I was 'cured', he was wrong; my family doctor thought I was hypochondriac, he was also wrong ...
Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.
Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us. 6-15-2011]
From NancyL: "Go to http://www.mbcnetwork.org/ and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."
Name _____ Er Pr Her2 (Initial Diag) Stage IV Diagnosis ___ Clinical Trial __ Triumph years since StageIV ___ (NED = No Evidence of Disease)
@11yrs5xsr5r (Laurie) _________ 1998 Pancreas Peritoneal Lung ______ Navel/H, T-DM1, Ixempra, Eribulin 14 years and counting
Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung ________T-DM1___________ 9 years and counting
Ahoff (Ann) ____________________________May 2010 IBC _________________________________ 2 year 2 months and counting
Alex1 ___________Er- Pr- Her2+ (Feb 2010) Aug 2011 Liver, lymphatic, skeletal _______________ 11 months and counting
Alexandra1('s wife) ____ (stage 3 dec 2010) Feb 2012 brain (wbr) xeloda and tykerb herceptin _ 1 1/2 year and counting
allielala _____________ Her2+ (July 2009) March 2012 Liver _____________________________ 2 years 10 months and counting
@A. L. Pendley ________________ (1999) 2004 lungs, bone, lymph, 2012 Brain _H, Ty, X, Xgeva _ 8 years and counting.
AndiBB ________ Er-Pr-Her2+ (July 1995 IV ILC) Aug 1998 Liver _ Herceptin 10 years till 2008 _ 17 years and counting (NED since 1999)
@ Angela ( - NC) ________ Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife) _ 5 years 7 months and counting
Angela R _____________________________ (2009) April 2011 ______________________________ 1 year 3 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 _________ 4 years 6 months and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine _______________________ 9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain ________________________ 8 years 2 months and counting (NED)
Bevilj _____________ Er- Pr- Her2+ (June 2009) bil. Mast. liver, bone 2011 skin _______________ 3 years 1 month and counting
@Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver _____________ 4 yrs 9 months and counting
@Calisa71 ____________ Her2+ Er+ Pr+ (1998) axilla nodes/bones 2000 __GKRS 2007 Irinotecan, Tykerb, Herceptin, Xgeva 12 years and counting
@Caroline96 (Maria) _______________(2003) Dec 2010 lungs, bones ___ XHZ THZ Now HFFZ ___ 9 yrs and NED
@cdbernal (Charlyn) _________________________ Aug? 2006Liver ___________________________ 5 yrs 11 months and counting
Ceesun (Cathy) _________________________ June 2006 Lung _______________________________ 6 yrs 1 month and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 2 yrs 10 months and counting
Choyces (Tina) __________________ July 2011 neck node and lung __ waiting for vaccine trial _ 1 year and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 7 yrs 10 months and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur _______________ 6 yrs 9months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver __________________________ 1 year 2 month and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) ________ 3 yrs 5 months and counting
Dawny _________Er- Pr- Her2+ (May 27 2011)lung nodes chest + neck Abraxane weekly - 16 weeks Herceptin every third week (Sept 26 NED) __________________________________________________ ______ 1 year 2 month and counting
@dchips1 (Darita) ______Er- Pr- Her2+ Jan 2006 Liver/pelvis 2007WBR 2008 and 2009 GKRS ______ 6 1/2 years (1/2011 NED)
DEBBIE S ______________________ Er- Pr- Her2+ Oct. 2004 Liver ____________________________ 7 yrs 9 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 1 year 9 months and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial __1 2/3 years and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung ___________________________ 12 yrs and counting
DianaMK ________________________ _(Dec 2006) June 2010 Skin Lung ______________________ 2 yr 1 month and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _ 3 yrs 2 month and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 2 years 5 month and counting
elcalabrese (Eleanor) _______________________ 2002 Stage IV ___________ Herceptin ________ 10 years and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone ___________ 2 1/2 yrs and counting (NED till 1-2012)
Emy ____________________ Er+ Her2+ (2001 DCIS) 2010 Lung 2011 Liver _____________________ 2 yrs and counting
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver _____________________________ 5 yrs 5 months and counting
Flossie __________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck ____________________ 4 yrs and counting
Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial ______ 5 yrs 11 months and counting
@Flutterby ____________________ Her2+ (2003) 2006 2010 2012 Lung ______________________ 9 yrs and counting
@Gracepang _________________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain ________________ 3 yrs and counting
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs _____________________ 1 year 3 months and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1___ 6 yrs 11 months and counting
iamlisaann (Lisa) __________ Er- Pr- Her2+ (June) July 2006 Liver Brain ___UCSF Avastin/Tykerb __ 6 years and counting (NED)
@Jacqueline1102 (Jackie) _______ IBC Oct. 2011 Liver ________ Perjeta and Herceptin _________ 10 months and counting
Jeana _______________________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung _______ 1 year 3 months and counting
@jkdowl _____________________ (Dec 2010 III) Feb 2011 Bones ____________________________ 1 year 5 months and counting
@jml (Jessica) ________ May 2002 Liver 2007 supclav. Node 2010 Brain Novalis 2010, WBR 2012 _ 10 years 2 months and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED) _________________ 5 1/2 yrs and counting
Joan S. _____________________________________ April 2007 ________________________________ 5 yrs 3 month and counting
@KaiM _________________Er- Pr- Her2+ (Sept 2011) Nov. 2011 Bones and Liver________________ 8 months and counting
Kathy T _____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs) _______ 9 1/2 yrs and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver ______________________ 6 yrs 8 months and counting
@KayeR_______ Er+ Her2+ Jan. 2000 (Stage II) July 2011 Lungs __tamoxifen, Zoladex and H 1 yr 1 month and counting
(Karen) __________________ Er- Pr+ Her2 + June 2010 Liver _____________________________ 2 yrs 1 month and counting KG1993 (Kim for her Mom) _____________Her2 + Aug. 2011 Bone Liver _______________________ 11 months and counting Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine____ 10 yrs 10 months and counting (6 yr NED) Kim in DC ____ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum _____ T-DM1 (2 yrs) ___ 4 yrs 5 months and counting
kk1 ___________________Er+Pr+ Her2 ________ March 2004 spots on liver ___________________ 8 years 4 months and counting (NED since 2009)
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ______________________ 1 1/2 year and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 1 year 2 months and counting
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain _____________________________ 1 year 6 months and counting
KsGal _____________ Er-Pr- Her2+ (Oct 2011) Dec 2011 Liver ________________________________ 7 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ___________________________ 4 years 5 months and counting
Laura4252 ____ (High grade DCIS 2005) recur 2009 April 2011 Left Lung _______________________ 3 years 3 months and counting
Lauriesh (Laurie) ______Er- Pr- Her2+ (March 2005) July 2010 2 Liver mets (RFA) _ U of W vaccine _ 2 years and counting (16 months NED)
Lettik _______________ Er- Pr- Her2+ November 2009 Liver mets _TDM1 2010 ; Everolimus 2011 __ 2 years 8 months and counting
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ________________ 5 yrs 5 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ________ Taxol + TDM-1 _________ 4 yrs 9 months and counting (NED)
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _____ 8 yrs and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3 __ 1 yr 1 month and counting
Marilyn _______________________________ (2000) July 2001 Bones _________________________ 11 yrs and counting
Mary L _______________________ (Oct 2003 IBC IIIB) July 2004 Skin __________________________ 8 yrs and counting (NED since Oct 2007)
@Michka_______Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver Lungs Nodes _TDM1 arm (Theresa) __ 1 yr 7 months and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 5 yrs 11 months and counting
Mollecat _________________________ July 2011 nodes by lung, above clavicle, in neck _________ 1 year and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver, lung ________________________ 1 yr 2 months and counting (NED 12/05)
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________ 3 yrs 5 months and counting (NED till mid 2012)
NEDenise ___________ Er- Pr- Her2+ (Feb 3, 2011) Jul 23, 2012 Brain __________________________ 1 month and counting
Ninjalyn ______________________ March 2011 lungs and chest wall Navelbine/Herceptin/Arimidex 1 year 4 months and counting
No More Tears _____________________________ Oct 2010 Spine Chemo Herceptin Zometa _______ 1 year 9 months and counting NED
Nsebesta _______________________________ (2001) May 2004 Liver __________________________ 8 yrs 2 months and counting (NED since 2005)
PAFB _______________________ (Jan. 1997) Jan 1998 Metastasis _ Herceptin 12 1/2 yrs till 4/2011 _ 13 1/2yrs and counting
@Pamelamary (Pam)_____________Er+ Her2+ (2004) Feb 2012 Spine, pelvis, ribs ___Marianne__ 8 yrs and counting
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)_______________ 9 yrs 10 months and counting
PatE _______________________________________ Oct 2007 Liver spine ________________________ 4 yrs 9 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ______ 1 year 10 months and counting
@Peggy09 ____________________________________ Feb. 2010 Liver, bone, lymph nodes ________ 2 yrs 5 months and counting (NED)
Phil (‘s wife) ___________________________________________ 2006 ___________________________ 6 years and counting
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ________________ 1 year 4 months and counting
pmoore (Pia) ______________ Er- Pr+ Her2+ (2003 II) 2010 Lung Er+ Pr+ _______ Herceptin ______ 2 years and counting
Radiant (Kim) _____________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes ______________ 2 years and counting
@Redwolf8812 (Penny) _______ Er- Pr- Her2+ (July III) Nov 2010 Skin ________Parp inhibitor___ 1 year 8 months and counting
Ricky (‘s wife) _______________________________ 2006 Liver ________________________________ 5 1/2 years and counting (3 + years NED)
Rolepaul (‘s wife) ____________________ (1980’s) 11/2009 Brain (Leptomeningeal), spine ______ 2 years 8 months and counting
Sandra Digilio ______________________ (Dec., 2009) Sept. 2011 3 spots in bone _______________ 10 months and counting
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ____________ WBR __________________ 4 years 8 months and counting (NED 4-16-2008 ~ May 2012)
@Shaysmom (Kelly) _______________ (2001 Stage III) 2002 Ovaries 2009 Mediasternum _______ 9 yrs and counting
Sheila _______________ Er- Pr- Her2+ (Feb 2002) Sept. 2003 Neck nodes _______ T-DM1(3) ______ 8 yrs 10 months 7and counting
Sherryg683 __________________________________ Dec 2005 Lungs ___________________________ 6 yrs 7 months and counting
SoCalGal (Flori) _________________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _ 5 yrs 4 months and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ____________________________ 10 ½ yrs and counting (NED since 2005)
Survivor2be (Andrea) _________triple – (Sept 2010) 9/2011 Her2+ brain ______________________ 10 months and counting (4+ weeks NED)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver ____________________________________ 4yrs 10 months and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip _________________________ 8 yrs and counting
teresalynn _________________________ July 2011 Liver TCH + Femera + Afinitor _______ 1year and counting
@Tiquer505 _____________ Er- Pr- Her2+ (1997) Four recurrences so far ______________________ 5 yrs and counting
Tonya ___________________________ Aug 2006 Liver ________________________________________ 5 years 11 months and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung ___________________________ 21 years and counting
Turbo ________________________________ Lung 2007 ________Herceptin only __________________ 5 yrs (NED)
Unregistered _____________________ Jan. 2007 ____________________________________________ 5 ½ yrs month and counting
Unregistered (8-25-2011 #106) __________________________________________________ __________ 9 years and counting
Vicki Revised ________________ Er- Pr-, Her2+ March 2011 liver TCH Tykerb ____________________ 1 year 4 months and counting
Vicky ____________________________ March 2011 Liver Spine _T-DM1 lungs brain 2-2012 Halaven_ 1 year 4 month and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 1 year 4 month and counting
Waterdreamer ___________________ (June 2008) Nov. 2009 Lungs and bones __ T-DM1 _________ 2 yrs 8 months and counting
Waytooyoung _____________Er+ Pr+ Her2+ (Feb 2010) Nov. 2011 chest wall, Pr- T-DM1+Pertuzumab 2 yrs 5 months and counting
@Whonose _________________________________ Jan. 2007 Liver and bones ___ UW vaccine ____ 5 yrs 6 months and counting (NED since finishing chemo)
Yankeebikachic ___________ (April 2006 IIIC) July 2008 Nodes in sup. clav. ___________________ 4 yrs and counting (NED since Dec. 2008)

[Emy]

Was diagnosed with ductal ca in 2001...had right mastectomy, on tamoxifen for 5 years....in feb 2010, incorrectly diagnosed with lung ca..never smoked...had right lower lobe of lung removed and 16 weeks of carboplatin chemotherapy...in mar 2011, found spot in my liver....redid all tests...found I never had lung cancer, but her2 positive, estrogen positive, program neg...fish5.4.....started herceptin sept 2011..diagnosed stage 4.....feb2012 herceptin stopped working...mar 2012 started taking 6 pills tykerb daily and herceptin every 3 weeks along with fulvestant...with tykerb and herceptin last pet scan showing liver spots decreased and spots on bone disappeared....

[Andrea Barnett Budin]

Oh Emy! We're all here with you.

They did a biopsy of lung tumor/tissue? Pathology report turned out to be wrong? How could such a thing happen??? 16 wks of carbo. Unnecessarily???

Estrogen positive. Progesterone negative????

Don't know what fulvestant is. Surely know HER2 positive and Herceptin. Not familiar with it stopping being effective so fast. But with Tykerb liver spots shrinking and bone spots disappeared. Fabulous news.

Finally, good news! Loks like you've found you're recipe for success.

How do you misdiagnosis lung ca? or was it bc in the lung????

Please keep us all posted on what is happening now.

Where do you live? Did you get 2nd opinions? All around? And 3rd??? I've learned quickly to educate myself as best I could, in a New York minute as they say, by gathering opinions. 2 path reports. Collect ev test report from everyone. Keep on top of everything and in charge while dealing with frantic feelings and shock. You just have to do what you have to do?

Are you doing all this with a husband, friend, family member? 4 ears and 2 heads are so much better than going it alone.

We are all here -- with you -- to help, support, share our experience... all the time.

Loving energy coming at you,
Andi

Andi

[NEDenise]

Jackie,
I am so touched that you have gone to the trouble to update my Stage IV survival by the day! You are certainly a devoted and caring friend! Thank you!
Hopefully, one day I'll be in the decade counting category!
Big hug headed your way!
Denise

[Redwolf8812]

Stage 4 as ER-/PR-/HER2+ AND BRCA2+
Anyone else have this charming combo? I was told it's a rare mix. So far I know of two other women on another board with it. Was just wondering if there's anyone else and what you're doing for treatment (I'm too lazy to "search").

Penny

[pibikay]

What is BRCA2+

[Jackie07]

Current stats:

Total 127members* and 648* years 10 months 9 days (and still counting) as of Sept. 2, 2012
@ - members gleaned from other threads (You can use ‘Search’ to locate their postings)

*Including the founder of this group, Christine ((1990) 1999 Chest Brain NED 2001~), those who have posted on this thread, and members gleaned from other threads

[Introduced to one of our new members this thread which Jean had started in January. Then I noticed SoCalGal's tally (145 years for all 33 members) back in March. Thought I'd double check and add the ones after her posting. And I came up with 220 years and three months. (60 members* and 284* years as of July 9, 2011.) And it suddenly downed on me that I have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my oncologist thought I was 'cured', he was wrong; my family doctor thought I was hypochondriac, he was also wrong ...
Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.

Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us. 6-15-2011]

From NancyL: "Go to http://www.mbcnetwork.org/ and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."

Name _____ Er Pr Her2 (Initial Diag) Stage IV Diagnosis ___ Clinical Trial __ Triumph years since StageIV ___ (NED = No Evidence of Disease)

@11yrs5xsr5r (Laurie) __ 1998 Pancreas Peritoneal Lung __ Navel/H, T-DM1, Ixempra, Eribulin __ 14 years and counting
Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung _______T-DM1 ______ 9 years 2 months and counting
Ahoff (Ann) ____________________________ May 2010 IBC ____________________________ 2 year 4 months and counting
Alex1 ___________ Er- Pr- Her2+ (Feb 2010) Aug 2011 Liver, lymphatic, skeletal ________________ 1 year 1 month and counting
Alexandra1('s wife) ___ (stage 3 Dec 2010) Feb 2012 brain (wbr) xeloda and tykerb herceptin ________ 1 year 9 months and counting
allielala _____________ Her2+ (July 2009) March 2012 Liver ____________________ _________ 3 years 2 months and counting
@A. L. Pendley ___________ (1999) 2004 lungs, bone, lymph, 2012 Brain _ H, Ty, X, Xgeva __________ 8 years and counting
AndiBB _____ Er-Pr-Her2+ (July 1995 IV ILC) Aug 1998 Liver _ Herceptin 10 years __ ____ 17 years 2 months and counting (NED since 1999)
@ Angela ( - NC) ____ Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife) ___ 5 years 9 months and counting
Angela R _____________________________ (2009) April 2011 _____________ ________________1 year 5 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 _________ 4 years 8 months and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine ____________________ 9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain ___________ 8 years 4 months and counting (NED)
Bevilj _____________ Er- Pr- Her2+ (June 2009) bil. Mast. liver, bone 2011 skin_______ 3 years 3 months and counting
Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver _________4 yrs 11 months and NED (7-2012)
@Calisa71 ______ Er+ Pr+ Her2+(1998) axilla nodes/bones 2000 _GKRS _ Irinotecan, Tykerb, H, Xgeva _ 12 years and counting
@Caroline96 (Maria) _______________(2003) Dec 2010 lungs, bones ___ XHZ THZ Now HFFZ ________ 9 yrs and NED
@cdbernal (Charlyn) ______________ Aug? 2006 Liver ____________________ _________________ 6 yrs and counting
Ceesun (Cathy) __________________ June 2006 Lung ____________________ _________________ 6 yrs 2 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone __________ _________________ 3 yrs and counting
Choyces (Tina) __________________ July 2011 neck node and lung __ waiting for vaccine trial _______ 1 year 2 months and counting
Chrisy ______________ Er- Pr- Her2+ (June2002) Sept. 2004 Liver ______T-DM1_____________ 8 yrs and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur ________ 6 yrs 11 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver ____________1 year 4 months and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) ___ 3 yrs 7 months and counting
Dawny _________Er- Pr- Her2+ (May 2011) lung nodes chest + neck Abraxane weekly - 16 weeks Herceptin every third week (Sept 26 NED) 1 year 4 months and counting
@dchips1 (Darita) ______Er- Pr- Her2+ Jan 2006 Liver/pelvis 2007WBR 2008 and 2009 GKRS ___ 6 years 8 months (1/2011 NED)
DEBBIE S ______________________ Er- Pr- Her2+ Oct. 2004 Liver ___________________________ 7 yrs 11 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ______________ 2 year 6 months and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial __1 2/3 years and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung _____________________ 12 yrs and counting
DianaMK ________________________ _(Dec 2006) June 2010 Skin Lung ______ 2 yrs 3 months and counting (NED March 2011)
@Dianedack______ Er+Pr+ Oct 2001 2 nodes May 2009 Liver 2011Lung, Liver, Brain, Neck Node _ 3 yrs 4 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung _________ 2 years 7 months and counting
elcalabrese (Eleanor) _______________________ 2002 Stage IV ___________ Herceptin ______ 10 years and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone _ 2 yrs 8 months and counting (NED till 1-2012)
Emy ____________________ Er+ Her2+ (2001 DCIS) 2010 Lung 2011 Liver ________ 2 yrs and counting
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver _______________ 5 yrs 7 months and counting
@fentonlady ____________________________ June 2004 Liver __ Herceptin ______ 8 years 2 months and counting
Flossie __________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck _______ 4 yrs 2 months and counting
Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ___UW peptide trial __ 6yrs 1 month and counting
@Flutterby ____________ Her2+ (2003) 2006 2010 2012 Lung __________________ 9 yrs and counting
@Georgia Girl (Beth) ______________________ Herceptin, Tykerb, Halaven ________ 11 years and counting
@Gracepang ________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain _____________ 3 yrs and counting
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs _________ 1 year 5 months and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1_ 7 yrs 1 month and counting
jamlisaann (Lisa) ________ Er- Pr- Her2+ (June) July 2006 Liver Brain ___UCSF Avastin/Tykerb ___ 6 years 3 months and (NED)
Jacqueline1102 (Jackie) ____ IBC Oct 2011 Liver _____ Perjeta and Herceptin ____________11 months and counting
Jeana _______________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung _ 1 year 5 months and counting
@jkdowl ________________ (Dec 2010 III) Feb 2011 Bones ____________________ 1 year 7 months and counting
@jml (Jessica) ____ May 2002 Liver 2007 supclav. Node 2010 Brain Novalis 2010, WBR 2012 _ 10 years 4 months and counting
Joan M _______ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED) ___________ 5 yrs 8 months and counting
Joan S. ______________________ April 2007 ________________________________ 5 yrs 5 months and counting
@KaiM ____ Er- Pr- Her2+ (Sept 2011) Nov. 2011 Bones and Liver________________ 10 months and counting
Kathy T ______ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs) _______ 9 yrs 8 months and counting
Kavy _______________ (April 2005) Nov. 2005 Lung Liver ______________________ 6 yrs 10 months and counting
@KayeR _______Er+ Her2+ Jan. 2000 (Stage II) July 2011 Lungs Tamoxifen, Zoladex and H _______ 1 yr 2 months and counting
KDR(Karen) ___ Er- Pr+ Her2+ June 2010 Liver _________T-DM1________________ 2 yrs 3 months and NED
KG1993 (Kim for her Mom) _Her2+ Aug 2011 Bone Liver ________________________ 1 year 1 month and counting
Kim in CA _____ Er+ Her2+ (Feb 1997) Sept 2001 Liver ___ UW Vaccine _11 yrs and counting (6 yrs NED)
Kim in DC __ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum ___ T-DM1 (2 yrs) ______ 4 yrs 7 months and counting
kk1 ____________ Er+Pr+ Her2 _ March 2004 spots on liver _______________ 8 years 6 months and counting (NED since 2009)
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones __________ 1 year 8 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _____________ 1 year 4 months and counting
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain _______________ 1 year 8 months and counting
KsGal _____________ Er-Pr- Her2+ (Oct 2011) Dec 2011 Liver _________________ 9 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ______________ 4 years 7 months and counting
Laura4252 ____ (High grade DCIS 2005) recur 2009 April 2011 Left Lung __________ 3 years 5 months and counting
Lauriesh (Laurie) ______Er- Pr- Her2+ (March 2005) July 2010 2 Liver mets (RFA) _ U of W vaccine _ 2 years 2 months and counting (16 months NED)
Lettik _______________ Er- Pr- Her2+ November 2009 Liver mets _TDM1 2010 ; Everolimus 2011 __ 2 years 10 months and counting
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ___ 5 yrs 7 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ___TDM1 _______ 4 yrs 11 months and counting (NED till mid 2012)
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _____ 8 yrs and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3 __ 1 yr 3 months and counting
Marilyn _______________________________ (2000) July 2001 Bones ____________ 11 yrs 2 months and counting
Mary L _______________________ (Oct 2003 IBC IIIB) July 2004 Skin ___________8 yrs 2 months and counting (NED since Oct 2007)
@Michka_______Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver Lungs Nodes _TDM1 arm (Theresa) __ 1 yr 9 months and counting
@Midwest Alice ____ ER- PR- Her2+ April 2008 IBC Spine ______ Enalaprial for heart ____ 4 years 5 months (NED since 2009)
@MikeF (‘s wife Barb)_____ ER- PR- Her-2 + Aug. 2010 Spine, skin _____ TDM1 ____ 2 yrs 1 month and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _______________ 6 yrs 1 month and counting
Mollecat _________________________ July 2011 nodes by lung, above clavicle, in neck _ 1 year 2 months and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver, lung ___________ 1 yr 5 months and counting (NED 12/05)
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 __________________ 3 yrs 7 months and counting (NED till mid 2012)
NEDenise ___________ Er- Pr- Her2+ (Feb 3, 2011) Jul 23, 2012 Brain ____________ 1 month 10 days and counting
Ninjalyn ___________ March 2011 lungs and chest wall Navelbine/Herceptin/Arimidex 1 year 6 months and counting
No More Tears ____________________ Oct 2010 Spine Chemo Herceptin Zometa _______ 1 year 11 months and counting NED
Nsebesta ________________ (2001) May 2004 Liver ____________ 8 yrs 4 months and counting (NED since 2005)
PAFB _________________ (Jan. 1997) Jan 1998 Metastasis _ Herceptin 12 1/2 yrs till 4/2011 _ 14 yrs 7 months and counting
@Pamelamary (Pam) ___________ Er+ Her2+ (2004) Feb 2012 Spine, pelvis, ribs ___ Marianne ___ 8 yrs and counting
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)_______ 10 yrs and counting
PatE _______________________________________ Oct 2007 Liver spine _________ 4 yrs 11 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver _ 2 years and counting
@Peggy09 ____________________________________ Feb. 2010 Liver, bone, lymph nodes _ 2 yrs 7 months and counting (NED)
Phil (‘s wife) ___________________________________________ 2006 ___________ 6 years and counting
pibikay (Hema) _______ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ________ 1 year 6 months and counting
pmoore (Pia) ______________ Er- Pr+ Her2+ (2003 II) 2010 Lung Er+ Pr+ _______ Herceptin _ 2 years and counting
Radiant (Kim) _____________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes ____ 2 years and counting
@Redwolf8812 (Penny) _____ Er- Pr- Her2+ (July III) Nov 2010 Skin _Parp inhibitor ___ 1 year 10 months and counting
Ricky (‘s wife) _____________________ 2006 Liver ___________________________ 5 1/2 years and counting (3 + years NED)
Rolepaul (‘s wife) __________ (1980’s) 11/2009 Brain (Leptomeningeal), spine ______ 2 years 10 months and counting
Sandra Digilio ______________ (Dec., 2009) Sept. 2011 3 spots in bone ___________ 1 year and counting
Schoolteacher (Amelia) _____ Nov 28. 2007 L4 ____________ WBR ______________ 4 years 10 months and counting (NED 4-16-2008 ~ May 2012)
@Shaysmom (Kelly) ____________ (2001 Stage III) 2002 Ovaries 2009 Mediasternum _______ 9 yrs and counting
Sheila _________ Er- Pr- Her2+ (Feb 2002) Sept 2003 Neck nodes _______ T-DM1(3) _______ 9 yrs and counting
Sherryg683 __________________ Dec 2005 Lungs ___________________________ 6 yrs 9 months and counting
SoCalGal (Flori) ______________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _ 5 yrs 6 months and counting
StephN _________________ (Sept 2000) Jan 2002 Liver _____________________ 10 yrs 8 months and counting (NED since 2005)
Survivor2be (Andrea) _______ triple – (Sept 2010) 9/2011 Her2+ brain ___________ 1 year and counting (4+ weeks NED)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver ____________________ 5yrs and NED (1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip _____________ 8 yrs and counting
teresalynn ____________________________ July 2011 Liver TCH + Femera + Afinitor ____________1 year 2 months and counting
@Tiquer505 _____________ Er- Pr- Her2+ (1997) Four recurrences so far _________ 5 yrs and counting
Tonya ___________________________ Aug 2006 Liver _______________ Halaven __ 6 years 1 month and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung _______________ 22 years and counting
Turbo ________________________________ Lung 2007 ________ Herceptin only ___ 5 yrs (NED)
@Udith7 (Judith) _______________ 1998 Liver _________________ Herceptin _____ 14 years and counting
Unregistered _____________________ Jan. 2007 ____________________________ 5 yrs 8 months and counting
Unregistered (8-25-2011 #106) __________________________________________ 9 years and counting
Vicki Revised ________________ Er- Pr-, Her2+ March 2011 liver TCH Tykerb __________ 1 year 6 months and counting
Vicky ____________________________ March 2011 Liver Spine _T-DM1 lungs brain 2-2012 Halaven_ 1 year 6 months and counting
Vivienne [Mom of]_________________ March 2011 Liver ____________________ 1 year 6 months and counting
Waterdreamer ___________________ (June 2008) Nov. 2009 Lungs and bones __ T-DM1 _________ 2 yrs 10 months and counting
Waytooyoung _____________Er+ Pr+ Her2+ (Feb 2010) Nov. 2011 chest wall, Pr- T-DM1+Pertuzumab 2 yrs 7 months and counting
@Whonose _________________ Jan. 2007 Liver and bones ___ UW vaccine ____ 5 yrs 8 months and counting (NED since finishing chemo)
Yankeebikachic _________ (April 2006 IIIC) July 2008 Nodes in sup. clav. __________ 4 yrs 2 months and counting (NED since Dec. 2008)

[Bunty]

Hi Jackie, I wondered whether I should have my 'membership' updated to NED since my PET/CT results from July scans showed no active cancer at all (just evidence of previous mets, but not sure if that actually means NED)? I just thought it gives a bit of hope to see another NED.... Fingers crossed it lasts a lonnnnnggg time!

Cheers Marie