Re: Calling all stage iv sisters
 

Hi gang!!

I wanted to update the Stage IV survivors list with some good news.

My old friend Abraxane has done the trick one more time.

Although I am completely bald and my finger nails are lifting from their beds (YUK!!)..... As of my April 5, 2012 scan I am back to NED!!! It felt so good to update my lengthy signature with a green, NED status.

Timing is perfect as I get a chemo break and will be off chemo to travel to my nephew's graduation and also for an annual mother/sisters trip. YEA!!! I am day dreaming of all the fun I can pack into a 3 month window before I receive another scan.

For now...I'll take it. Celebrating for sure.

I hope this provides encouragment that and old dog can do old tricks.

Re: Calling all stage iv sisters
 

13 months

March 2011: dx advanced IDC stage 4, PR/ER-, HERC2+, tumor in left breast 11cm, tumor in liver 1cm. 6 rounds Taxotere/Carboplatin & Herceptin. Continue Herceptin every 3 wks to current. Post-chemo/pre-mx scan July showed breast tumor 1.5cm, liver met gone. August: bi-lat mx, path report showed NED. Feb 2012 scan: 6 small mets to liver despite normal tumor markers and no pain. Added Tykerb daily. Next scan will be May 2012.

Re: Calling all stage iv sisters
 

lori, great news, congratulations on getting to NED. I am hoping to meet up with that fella myself soon.

Re: Calling all stage iv sisters
 

Lori- that is fantastic news that you have NED back, congratulations, go a nd have a great time!
Dawn

Re: Calling all stage iv sisters
 

Awesome, Lori! God is good!

Re: Calling all stage iv sisters
 

Lori,

I am so glad to hear your good news this morning. I have been taking Abraxane treatments every two weeks, so far I have taken four treatments. How many months did it take you to get to NED?

I go to the doctor today. Taxol has worked very well in the past for me. I have very little hair left. I have a hat on right now. My toenails look bad. I am going to be glad when summer is here, so I can go bare foot.

Hope to hear your reply soon.

Amelia

Re: Calling all stage iv sisters
 

Amelia,
Given your previous success with Taxol...I am sure the Abraxane will work for you.

Since tumor markers do not work for me, my Onc scans every 3 months. The tumor flare up had reduced 1/2 by 3 months (3 weeks on / 1 week off) and was NED after 6 months.

Other than the finger nail issues, I've found the treatment to be very manageable. I sure hope you find it tolerable as well. Keep us posted!!!!

Lori

Re: Calling all stage iv sisters
 

Lori,

Thanks for the response. I have taken 5 treatments every two weeks, so I have two months down. I have five more weeks to work at school, and I would like to be NED by the time school starts back.

You have offered me hope. I am feeling better since the days are long, and I can get more sun light. My tumor marker dropped 7 more points two weeks ago, so I am at 54. I took a test yesterday, and I feel like it should be back in the 40 range. You were diagnosed in October 2007 and I was diagnosed in December 2007. I thank God for my four years and 4 months.

Have a great weekend. Please let all of us know how you are doing.

Amelia

Re: Calling all stage iv sisters
 

Lori
Brilliant news, you have made my day! Long may you stay NED.

Big hugs from across the pond.

Ellie

Re: Calling all stage iv sisters
 

My wife had brain mets found 11/09. Surgery, gamma knife radiation, Xeloda/Tykerb. Then various radiation hot shots for two years. PET found cancer in the Leptomeningeal area of the spine 20-30 hot spots on MRI on 12/14/2011. Radiation for ten days, then intrathecal Herceptin (40 mg for four weeks and 80 mgs since, with topotecan at the increase). IV Herceptin and Navelbine started on February 22. This is the treatment I came up with by researching in forums like this one, looking at cases studies, contacting patients that had success, and always believing in my wife being able to be cured. The nurses told my wife 50/50 for seven weeks, 5% chance to make it 6 months in mid December. MRIs on 4/8/2012 show spine tumors and brain tumors no longer taking the contrast agent, no tumor cells in the blood or spinal tap, and Nina is enjoying a normal life (except for pain in lower back). In other words, listen to this board, research your options, and keep beating on the tumors like crazy. The doctors quote statistics, while I focus on a single patient. Her case will make medical news, help patients, and further careers. I just get to hug her on a regular basis.

"Never give up" - Untouchables; "I hate to lose" - Star Trek II Wrath of Kahn; "Eye of the Tiger" - Rocky III;

In the movie "The Medicine Man" the cure was in the ants that lived in the flowers, not the flowers. The Medicine Man knew that. The Researcher did not discover this until the end of the movie. Sometimes we can discover cures better than the doctors and others. By the way, I did research on many of these drugs used to treat my wife in the mid to late 1980's. If you help one person, it may pay forward back to you.

Re: Calling all stage iv sisters
 

Thank you, "Rolepaul." It's great to know stories like this one.

I was switched to Abraxane when I became allergic to the solvent in Taxol. I found it much easier to tolerate.

Re: Calling all stage iv sisters
 

Current stats:
Total 116 members* and 496* years (and still counting) as of May 20, 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)

Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung ________T-DM1___________ 8 year 10 months and counting
Ahoff (Ann) ____________________________May 2010 IBC _________________________________ 2 year and counting
Alex1 ___________Er- Pr- Her2+ (Feb 2010) Aug 2011 Liver, lymphatic, skeletal _______________ 9 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
AndiBB ________ Er-Pr-Her2+ (July 1995 IV ILC) Aug 1998 Liver ____Herceptin 10 years ______ 16 years 10 months and counting (NED since 1999)
@ Angela ( - NC) ________ Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife) _ 5 years 5 month and counting
Angela R _____________________________ (2009) April 2011 ______________________________ 1 year 1 month and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 _________ 4 years 4 month and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine _______________________ 9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain ________________________ 8 years and counting (NED)
Bevilj _____________ Er- Pr- Her2+ (June 2009) bil. Mast. liver, bone 2011 skin _______________ 2 years 11 months and counting
@Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver _____________ 4 yrs 7 months and counting
@Caroline96 (Maria) _______________(2003) Dec 2010 lungs, bones ___ XHZ THZ Now HFFZ ___ 9 yrs and NED
@cdbernal (Charlyn) _________________________ Aug? 2006Liver ___________________________ 5 yrs 9 months and counting]
Ceesun (Cathy) _________________________ June 2006 Lung _______________________________ 5 yrs 11 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 2 yrs 8 months and counting
Choyces (Tina) __________________ July 2011 neck node and lung __ waiting for vaccine trial _ 10 months and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 7 yrs 8 months and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur _______________ 6 yrs 7 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver __________________________ 1 year and counting
CourtneyL _____________________Er- Pr- Her2+ April 2008 Liver Lung (NED) Bone Brain _________ 4 years 1 month and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) ________ 3 yrs 3 month 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 and counting
@dchips1 (Darita) ______Er- Pr- Her2+ Jan 2006 Liver/pelvis 2007WBR osteonecrosis 2009 GKRS 6 years 4 months (1/2011 NED)
DEBBIE S ______________________ Er- Pr- Her2+ Oct. 2004 Liver ____________________________ 7 yrs 7 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 1 year 7 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 ______________________ 1 yr 11 months and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _ 3 yrs and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 2 years 3 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 yrs 4 months and counting (NED till 1-2012)
Emy ____________________ Er+ Her2+ (2001 DCIS) 2010 Lung 2011 Liver _____________________ 2 yrs and couonting
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver _____________________________ 5 yrs 3 months and counting
Flossie __________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck ____________________ 3 yrs 10 months and counting
Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial ______ 5 yrs 9 months 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 1 month and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1___ 6 yrs 8 months and counting
iamlisaann (Lisa) __________ Er- Pr- Her2+ (June) July 2006 Liver Brain ___UCSF Avastin/Tykerb __ 5 years 10 months and counting (NED)
Jacqui ______________Er-Pr- Her2+ (Oct. 2009) Feb. 2011 Brain (VMAT radiation) _____________ 1 year 3 month and counting
Jeana _______________________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung _______ 1 year 1 month and counting
@jkdowl _____________________ (Dec 2010 III) Feb 2011 Bones ____________________________ 1 year 3 months and counting
@jml (Jessica) ________ May 2002 Liver 2007 supclav. Node 2010 Brain Novalis 2010, WBR 2012 _ 10 years and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED) _________________ 5 yrs 4 months and counting
Joan S. _____________________________________ April 2007 ________________________________ 5 yrs 1 month and counting
@KaiM _________________Er- Pr- Her2+ (Sept 2011) Nov. 2011 Bones and Liver________________ 6 months and counting
Kathy T _____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs) _______ 9 yrs 4 months and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver ______________________ 6 1/2 yrs and counting
KDR (Karen) __________________ Er- Pr+ Her2 + June 2010 Liver _____________________________ 1 yr 11 months and counting
KG1993 (Kim for her Mom) _____________Her2 + Aug. 2011 Bone Liver _______________________ 9 months and counting
Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine____ 10 yrs 8 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 3 months and counting
Kiwigirl _______________Er-Pr- Her2+ (Oct 2009) Feb. 2011 Brain (VMAT radiation) ____________ 1 year 3 months and counting
kk1 ___________________Er+Pr+ Her2 ________ March 2004 spots on liver ___________________ 8 years 2 months and counting (NED since 2009)
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ______________________ 1 year 4 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 1 year and counting
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain _____________________________ 1 year 4 month and counting
KsGal _____________ Er-Pr- Her2+ (Oct 2011) Dec 2011 Liver ________________________________ 5 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ___________________________ 4 years 3 month and counting
Laura4252 ____ (High grade DCIS 2005) recur 2009 April 2011 Left Lung _______________________ 3 years 1 month and counting
Lauriesh (Laurie) ____________________________ July 2010 2 Liver mets (RFA) ________________ 1 year 10 months and counting (6 months NED)
Lettik _______________ Er- Pr- Her2+ November 2009 Liver mets _TDM1 2010 ; Everolimus 2011 __ 2 1/2 years and counting
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ________________ 5 yrs 3 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver _____________________________ 4 yrs 7 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 __ 11 months and counting
Marilyn _______________________________ (2000) July 2001 Bones _________________________ 10 yrs 10 months and counting
Mary L _______________________ (Oct 2003 IBC IIIB) July 2004 Skin __________________________ 7 yrs 10 months and counting (NED since Oct 2007)
@Michka_______Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver Lungs Nodes _TDM1 arm (Theresa) __ 1 yr 5 months and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 5 yrs 9 months and counting
Mollecat _________________________ July 2011 nodes by lung, above clavicle, in neck _________ 10 months and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver, lung ________________________ 1 year and counting (NED 12/05)
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________ 3 yrs 3 months and counting (NED)
Ninjalyn ______________________ March 2011 lungs and chest wall Navelbine/Herceptin now Herceptin/ Arimidex 1 year 2 months and counting
Nsebesta _______________________________ (2001) May 2004 Liver __________________________ 8 yrs and counting (NED since 2005)
PAFB ____________________________ (Jan. 1997) Jan 1998 Metastasis ____ Herceptin till 4/2011 _ 13 yrs 4 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)_______________ 9 yrs 8 months and counting
PatE _______________________________________ Oct 2007 Liver spine ________________________ 4 yrs 7 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ______ 1 year 8 months and counting
@Peggy09 ____________________________________ Feb. 2010 Liver, bone, lymph nodes ________ 2 yrs 3 months and counting (NED)
Phil (‘s wife) ___________________________________________ 2006 ___________________________ 5 years and counting
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ________________ 1 year 2 month and counting
pmoore (Pia) ______________ Er- Pr+ Her2+ (2003 II) 2010 Lung Er+ Pr+ _______ Herceptin ______ 2 years and counting
Radiant __________________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes _______________ 2 years and counting
@Redwolf8812 (Penny) _______ Er- Pr- Her2+ (July III) Nov 2010 Skin ________Parp inhibitor___ 1 1/2 years 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 1/2 years and counting
Salli _____________________ Er+ Her2+ (Nov 2008) Oct 2010 spine, liver _____________________ 3 years 7 months and counting (5 months NED)
Sandra Digilio ______________________ (Dec., 2009) Sept. 2011 3 spots in bone _______________ 8 months and counting
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ____________________________________ 4 1/2 years and counting (NED since 4-16-2008)
@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 8 months 7and counting
Sherryg683 __________________________________ Dec 2005 Lungs ___________________________ 6 yrs 5 months and counting
SoCalGal (Flori) _________________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _ 5 yrs 2 months and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ____________________________ 10 yrs 4 months and counting (NED since 2005)
Survivor2be (Andrea) _________triple – (Sept 2010) 9/2011 Her2+ brain ______________________ 8 months and counting (4+ weeks NED)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver ____________________________________ 4yrs 8 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 _______ 10 months and counting
@Tiquer505 _____________ Er- Pr- Her2+ (1997) Four recurrences so far ______________________ 5 yrs and counting
Tonya ___________________________ Aug 2006 Liver ________________________________________ 5 years 9 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 yrs 3 month and counting
Unregistered (8-25-2011 #106) __________________________________________________ _________ 9 years and counting
Vicki Revised ________________ Er- Pr-, Her2+ March 2011 liver TCH Tykerb ____________________ 1 year 2 months and counting
Vicky ____________________________ March 2011 Liver Spine _T-DM1 lungs brain 2-2012 Halaven_ 1 year 2 month and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 1 year 2 month and counting
@Waterdreamer ___________________ June 2008 Nov Lungs and bones ________ T-DM1 _______ 3 yrs 11 months and counting
Waytooyoung _____________Er+ Pr+ Her2+ (Feb 2010) Nov. 2011 chest wall, Pr- T-DM1+Pertuzumab 2 yrs 3 months and counting
Yankeebikachic ___________ (April 2006 IIIC) July 2008 Nodes in sup. clav. ___________________ 3 yrs 10 months and counting (NED)

Re: Calling all stage iv sisters
 

My wife had a recurance with brain mets 2 months after completing her wbr. They are now giving her chemo. I have been looking for a survivor stories. I thank this thread as my hope has increased more especially after what jackie has put together. Thank you jackie. I am very afraid as i have 3 little girls.

Re: Calling all stage iv sisters
 

Current stats:
Total 116 members* and 520* years 5 months (and still counting) as of July 3, 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)

Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung ________T-DM1___________ 8 year 11 months and counting
Ahoff (Ann) ____________________________May 2010 IBC _________________________________ 2 year 1 month and counting
Alex1 ___________Er- Pr- Her2+ (Feb 2010) Aug 2011 Liver, lymphatic, skeletal _______________ 10 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
AndiBB ________ Er-Pr-Her2+ (July 1995 IV ILC) Aug 1998 Liver ____Herceptin 10 years ______ 16 years 10 months and counting (NED since 1999)
@ Angela ( - NC) ________ Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife) _ 5 years 7 month and counting
Angela R _____________________________ (2009) April 2011 ______________________________ 1 year 2 month and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 _________ 4 years 5 month and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine _______________________ 9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain ________________________ 8 years 1 month and counting (NED)
Bevilj _____________ Er- Pr- Her2+ (June 2009) bil. Mast. liver, bone 2011 skin _______________ 3 years months and counting
@Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver _____________ 4 yrs 8 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 9 months and counting]
Ceesun (Cathy) _________________________ June 2006 Lung _______________________________ 6 yrs months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 2 yrs 9 months and counting
Choyces (Tina) __________________ July 2011 neck node and lung __ waiting for vaccine trial _ 11 months and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 7 yrs 9 months and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur _______________ 6 yrs 8 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver __________________________ 1 year 1 month and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) ________ 3 yrs 4 month 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 1 month and counting
@dchips1 (Darita) ______Er- Pr- Her2+ Jan 2006 Liver/pelvis 2007WBR osteonecrosis 2009 GKRS 6 years 5 months (1/2011 NED)
DEBBIE S ______________________ Er- Pr- Her2+ Oct. 2004 Liver ____________________________ 7 yrs 8 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 1 year 8 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 months and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _ 3 yrs 1 month and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 2 years 4 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 yrs 5 months and counting (NED till 1-2012)
Emy ____________________ Er+ Her2+ (2001 DCIS) 2010 Lung 2011 Liver _____________________ 2 yrs and couonting
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver _____________________________ 5 yrs 4 months and counting
Flossie __________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck ____________________ 3 yrs 11 months and counting
Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial ______ 5 yrs 10 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 2 month and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1___ 6 yrs 10 months and counting
iamlisaann (Lisa) __________ Er- Pr- Her2+ (June) July 2006 Liver Brain ___UCSF Avastin/Tykerb __ 5 years 11 months and counting (NED)
Jeana _______________________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung _______ 1 year 2 month and counting
@jkdowl _____________________ (Dec 2010 III) Feb 2011 Bones ____________________________ 1 year 4 months and counting
@jml (Jessica) ________ May 2002 Liver 2007 supclav. Node 2010 Brain Novalis 2010, WBR 2012 _ 10 years and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED) _________________ 5 yrs 5 months and counting
Joan S. _____________________________________ April 2007 ________________________________ 5 yrs 2 month and counting
@KaiM _________________Er- Pr- Her2+ (Sept 2011) Nov. 2011 Bones and Liver________________ 7 months and counting
Kathy T _____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs) _______ 9 yrs 5 months and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver ______________________ 6 yrs 7 months and counting
KDR (Karen) __________________ Er- Pr+ Her2 + June 2010 Liver _____________________________ 2 yrs months and counting
KG1993 (Kim for her Mom) _____________Her2 + Aug. 2011 Bone Liver _______________________ 10 months and counting
Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine____ 10 yrs 9 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 4 months and counting
kk1 ___________________Er+Pr+ Her2 ________ March 2004 spots on liver ___________________ 8 years 3 months and counting (NED since 2009)
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ______________________ 1 year 5 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 1 year 1 month and counting
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain _____________________________ 1 year 5 month 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 4 month and counting
Laura4252 ____ (High grade DCIS 2005) recur 2009 April 2011 Left Lung _______________________ 3 years 2 month and counting
Lauriesh (Laurie) ______Er- Pr- Her2+ (March 2005) July 2010 2 Liver mets (RFA) ________________ 1 year 11 months and counting (16 months NED)
Lettik _______________ Er- Pr- Her2+ November 2009 Liver mets _TDM1 2010 ; Everolimus 2011 __ 2 1/2 years and counting
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ________________ 5 yrs 4 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver _____________________________ 4 yrs 8 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 and counting
Marilyn _______________________________ (2000) July 2001 Bones _________________________ 10 yrs 10 months and counting
Mary L _______________________ (Oct 2003 IBC IIIB) July 2004 Skin __________________________ 7 yrs 11 months and counting (NED since Oct 2007)
@Michka_______Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver Lungs Nodes _TDM1 arm (Theresa) __ 1 1/2 yrs and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 5 yrs 10 months and counting
Mollecat _________________________ July 2011 nodes by lung, above clavicle, in neck _________ 11 months and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver, lung ________________________ 1 year 1 month and counting (NED 12/05)
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________ 3 yrs 4 months and counting (NED)
Ninjalyn ______________________ March 2011 lungs and chest wall Navelbine/Herceptin now Herceptin/ Arimidex 1 year 2 months and counting
Nsebesta _______________________________ (2001) May 2004 Liver __________________________ 8 yrs 1 month and counting (NED since 2005)
PAFB ____________________________ (Jan. 1997) Jan 1998 Metastasis ____ Herceptin till 4/2011 _ 13 yrs 5 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)_______________ 9 yrs 9 months and counting
PatE _______________________________________ Oct 2007 Liver spine ________________________ 4 yrs 8 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ______ 1 year 9 months and counting
@Peggy09 ____________________________________ Feb. 2010 Liver, bone, lymph nodes ________ 2 yrs 4 months and counting (NED)
Phil (‘s wife) ___________________________________________ 2006 ___________________________ 5 years and counting
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ________________ 1 year 3 month 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 7 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 7 months and counting
Sandra Digilio ______________________ (Dec., 2009) Sept. 2011 3 spots in bone _______________ 9 months and counting
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ____________ WBR __________________ 4 years 7 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 9 months 7and counting
Sherryg683 __________________________________ Dec 2005 Lungs ___________________________ 6 1/2 yrs months and counting
SoCalGal (Flori) _________________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _ 5 yrs 3 months and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ____________________________ 10 yrs 5 months and counting (NED since 2005)
Survivor2be (Andrea) _________triple – (Sept 2010) 9/2011 Her2+ brain ______________________ 9 months and counting (4+ weeks NED)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver ____________________________________ 4yrs 9 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 _______ 11 months and counting
@Tiquer505 _____________ Er- Pr- Her2+ (1997) Four recurrences so far ______________________ 5 yrs and counting
Tonya ___________________________ Aug 2006 Liver ________________________________________ 5 years 10 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 yrs 3 month and counting
Unregistered (8-25-2011 #106) __________________________________________________ _________ 9 years and counting
Vicki Revised ________________ Er- Pr-, Her2+ March 2011 liver TCH Tykerb ____________________ 1 year 3 months and counting
Vicky ____________________________ March 2011 Liver Spine _T-DM1 lungs brain 2-2012 Halaven_ 1 year 3 month and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 1 year 3 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 4 months and counting
@Whonose _________________________________ Jan. 2007 Liver and bones ___ UW vaccine ____ 5 yrs 5 months and counting (NED since finishing chemo)
Yankeebikachic ___________ (April 2006 IIIC) July 2008 Nodes in sup. clav. ___________________ 3 yrs 11 months and counting (NED since Dec. 2008)

Re: Calling all stage iv sisters
 

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.

Re: Calling all stage iv sisters
 

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

Re: Calling all stage iv sisters
 

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

Re: Calling all stage iv sisters
 

Congratulations! Laurie.

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

Re: Calling all stage iv sisters
 

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.

Re: Calling all stage iv sisters
 

Also from CancerConnect:

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.
By Diana Price

When Kaillee Perry was diagnosed with Stage IV breast cancer at 34, it wasn’t the first time she would have to hear a dire prognosis—and then make up her mind to beat it. When she was 13, Kaillee suffered a head injury that caved in one side of her skull (to this day she has no bone there) and caused the treating physician in the emergency room to read her a laundry list of things she would never be able to do again. “Well,” says Kaillee, describing the fighting spirit that refused the grim forecast, “I’ve done every one of those things—with the exception of scuba diving—at least twice. There were so many things they told me that I couldn’t do; I think I lived to spite that doctor.”
Now, facing another tough road when an initial Stage IIB diagnosis of breast cancer metastasized to her liver, lungs, and brain, Kaillee warned her oncologist that she might just be around a while this time, too. In this case, however, she had a supportive doctor on her side as she came to terms with her Stage IV diagnosis: statistics are not set in stone, and there’s no one-size-fits-all strategy here, he told her; every case is different, and everybody responds differently to treatment.
Kaillee respected this response, noting, “In my life I’ve found that more often than not I’m the exception to the rule, whether that works in my favor or not.”
In Kaillee’s family, cancer has appeared often enough that she was aware that it was a possibility. Her maternal grandmother and two aunts were all diagnosed with breast cancer; her father passed away at age 33 from testicular cancer that had metastasized to his kidney and lung before being properly diagnosed; and she has a cousin who currently has thyroid cancer. But again, she was the exception to the pattern where breast cancer was concerned: she was diagnosed 20 years earlier than the other women in her family.
With her initial diagnosis, she says, she felt that “my body was acting funny” as early as two years before she went to the doctor; but at the time she thought that the symptoms she was experiencing were perhaps early signs of menopause (although at 30 she knew that was strange). She felt a lump in her breast, but she thought that it didn’t feel like a cancer lump should—it was soft and more fleshy than she thought was “normal” for cancer, and she figured it might be a cyst similar to those that an aunt had had removed. In addition, she had recently seen her doctor and had not raised any red flags.
By the time she was diagnosed, in January 2003, she had a tumor the size of a robin’s egg and lymph node involvement. Now, she says, she urges women to go to the doctor early. “If it doesn’t feel like a cancer ‘should,’ it doesn’t mean it’s not a cancer,” she cautions. “If you’ve got a lump in there—even if it’s soft—or if you even feel like something is just off, get it checked out.”
Because of her youth and the advanced stage of her cancer, Kaillee’s treatment plan was intense from the beginning. The dose-dense chemotherapy that she endured made her extremely ill and was followed by a mastectomy, reconstruction, and radiation. The process, Kaillee says, was overwhelming and confusing. “There’s nobody there to guide you after you leave your oncologist,” she says, “and we were at a bit of a loss.”
To add to the trauma, the first reconstruction was not done correctly, and she ultimately had to undergo a second surgery to repair it. Here too she cautions other women to listen to their instincts and be proactive: “There were warning signs there,” she says, hints that the reconstruction plan was not going well and that the doctor was not as qualified as he should have been. “He didn’t have photos to show of previous surgery results,” Kaillee says, thinking of the signs that in retrospect may have tipped her off. “He took weeks to return calls; his waiting room was always overly crowded, which I though meant he was good but which I think actually probably meant he was burning the candle at both ends and couldn’t really fully assess a patient’s history properly before making recommendations. But at the time I just didn’t know what to look for.”
Following her treatment and reconstruction ordeal, and after making the decision with her doctor to stop the series of Lupron® (leuprolide) shots because they were causing her too much pain, Kaillee had a brief period of respite. Brief, it turns out, because by summer her blood count was off, although it would take several months to determine where the cancer had metastasized. By October doctors found a few spots on her liver and one on her lung. Kaillee recalls her initial hopefulness—as she told her doctors, “Oh, great, you caught them early; it’s Stage I, right?”—and then the disappointment and the regrouping that followed the doctor’s explanation of metastases and the fact that this was actually a Stage IV breast cancer diagnosis.
Doctors prescribed Herceptin® (trastuzumab), which had a positive effect on her liver right away—two spots went away, and one shrunk considerably. The spot on her lung, however, was not affected and in fact grew a bit after nearly a year on Herceptin. It was biopsied to determine if it was a separate cancer but was found to be of the same origin. It was while Kaillee was in for a CT scan to further investigate her lung that shadows were detected at the base of her skull.
It was back to the drawing board. Facing an entirely new treatment plan, from the beginning Kaillee was clear about her priorities for this new challenge. She would pursue treatment, but she would also focus on her family—including her husband, Rich, and her sons, Pat and Devin—and take the time to enjoy her life. She and Rich decided to take out a life insurance line of credit offered by Fifth Season Financial, a process that they say was made extremely easy and taken care of quickly by the company, as they planned Kaillee’s treatment and thought about how they would like to proceed. With the funds from Fifth Season, the family brought over relatives from England for a family vacation and were also able to buy their elder son Pat the car he needed to commute to work, which they presented to him on his nineteenth birthday. Life was made a little sweeter and easier as they looked down the road toward the treatment that lay ahead.
This time what lay ahead was full brain radiation followed by an oral chemotherapy plan and Tykerb® (lapatinib). And though she was ready to begin this next stage, Kaillee was determined to enjoy her family vacation before embarking on the journey before her. “I plan for the worst, but I don’t lay down to it or live in constant fear of it either,” Kaillee says, referring to her diagnosis with metastatic disease and the many challenges she has encountered already. “There’s still a good fight in me yet.”
The fighting spirit that Kaillee has demonstrated throughout her life—from the childhood injury that she refused to let sideline her to the challenges of her metastatic diagnosis today—is bolstered by the inspiring advances being made in breast cancer research. Her transition from Herceptin to Tykerb, she says, demonstrates the speed at which research is accommodating cases like hers. “Herceptin was just in time for me, and I had very little trouble with it for 15 months; and now Tykerb, which works by breaking through the blood-brain barrier, is helping me along at this stage. There is new stuff happening every day, and they are getting closer to a cure.”
Ultimately, Kaillee says, she encourages women who are delivered a metastatic diagnosis to remain hopeful and to think outside the box. “It’s not that cut and dried,” she says of the statistics about Stage IV disease that they might be handed. “Don’t read too much into it. It’s a very good guideline, but if you buy into it as is, you’ve already lost the fight.” Powerful words, spoken directly from the front lines.