 |
|
01-22-2011, 07:41 PM
|
#1
|
|
Senior Member
Join Date: Jan 2011
Posts: 36
|
Re: Calling all stage iv sisters
I have been snooping in this forum for 7 years w/o signing in. I've received so much encouragement from so many of you. I thought this may be the time to 'help' other new comers feel hope. I became stage IV in May 2004 with 2 liver mets. After 8 mos. of chemo had surgery at MDAnderson on February 2, 2005 and have been NED since. I have been on Herceptin since Arpil of 2004 and have lived a very good quality of life. Never give up. We never know what God has in store for us.
|
|
|
|
01-22-2011, 09:33 PM
|
#2
|
|
Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
|
Re: Calling all stage iv sisters
Blessings abound! I am 7 years NED; after a diagnosis in 2004 with mets to the liver and all 4 lobes of my lungs. How grateful I am for all the sisters on this site. I have been on Herceptin for 7 years. Sisters with mets; please weigh in...see my thread...are all of you on Herceptin for the long haul? Have any of you with NED taken a Herceptin holiday?
Love Kim from CT
__________________
2001 - Stage 0, lumpectomy, radiation, tamoxifen
2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.
2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle
2011 - Still Herceptin only and NED
2011, June - STOPPED Herceptin and kicked up my heels!
2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.
2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine
2022 On Herceptin and NED continues - WOOT WOOT!
|
|
|
|
|
01-23-2011, 10:55 AM
|
#3
|
|
Senior Member
Join Date: Jul 2006
Posts: 869
|
Re: Calling all stage iv sisters
Stage IV for over 4 years...Ceesun
|
|
|
|
|
01-26-2011, 06:09 AM
|
#4
|
|
Senior Member
Join Date: Jul 2009
Location: Sardegna, Italy
Posts: 362
|
Re: Calling all stage iv sisters
I'm curious - as I was only stage 1 --- are all these Stage 4's on Herceptin all the time? It appears many of you have this in your stats but not all....
Thanks - Karen
__________________
Karen Wheelhouse Age: 46
Facebook id: Karen Wheel
2-09 – Age 44 -Biopsy-Cancer
3-09 – Right Quadrantectomy. Clear margins.
3 lymph nodes taken - all clear
Tumor results: Stage 1, 1.5 cm, Her2 +++
Est positive 80% - Prog 10% - Ki67 postive 30%
4-09 – Became a vegan! pH balance of body - cancer can't grow in neutral pH!
4-09 Started Herceptin & Chemo (9 weeks of Navelbine *)
* FYI - when coupled with Herceptin has the same results as more toxic chemo. No brainer!
8-09 - 30 RADS
9-09 - Said NO to hormone therapy
4-10 Finished Herceptin!!!!
7-10 PET Scan & other exams .... All clear! YIPPEE!!!!
11-10 Breast, organ Ultrasounds and lung x-rays all clear no changes ... NED!
2-25-2011 --- 2 years from surgery and NED!!!!!!
7-2011 Clear bone scan and full body and head MRI! NED! NED! NED! ;-)[/SIZE]
|
|
|
|
|
02-02-2011, 07:22 PM
|
#5
|
|
Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
|
Re: Calling all stage iv sisters
Well, thought I'd waddle over here after today's news and remind everyone it can be done: Stage IV, six months of Taxol and Herceptin and I am NED. So this is Day 1 of my NED, tomorrow is Day 2, Friday is Day 3...
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
|
|
|
|
|
02-03-2011, 08:40 AM
|
#6
|
|
Member
Join Date: Aug 2010
Posts: 7
|
Re: Calling all stage iv sisters
Diagnosed Jan 2006. Stage 4 since July 2008. Still here!!
__________________
Flossie
Jan 2006 DX large lump in armpit. 2 x 5mm tumors in left breast.
FEC for 6 cycles
Aug 2006 Mastectomy + Herceptin 1 yr + Tamoxifen.
Aug 2007 Lat Dorsi Reconstruction + Tamoxifen
Aug 2008 3cm brain met gamma knife +mets in rib and neck 5 x RT/Herceptin/Arimidex/Clodronate.
Apr 2009 11 mets Gamma Knife/Capecitibine/Tykerb
Mar 2010 3 mets Gamma Knife/Zometa/Femara/Tykerb
Mar 2010 Pet Scan all clear continue Tykerb
Aug 2010 12 mets + Zometa/Femara/Tykerb
Jan 2010 5 Years!!
Mar 2010 - Gamma Knife 7 mets
Aug 2010 - Gamma Knife 12 mets
Jan 2011 - 6 Years!
Mar 2011 - Gamma Knife
Mar 2011 - Taxotere
|
|
|
|
|
03-19-2011, 05:02 PM
|
#7
|
|
Senior Member
Join Date: Nov 2004
Posts: 190
|
Re: Calling all stage iv sisters
Where do I begin? My thread is pretty accurate. People are shocked when I tell them I have cancer. I still am having a persistent booger in my sternum. Hope to get if fried with radiation in two weeks. Just like Mamacze said "Blessings Abound"
KIM
__________________
8/98 dx right breast
5/2003 tram flap right breast
8/2004 dx new primary left breast with inflammatory bc
er/pr-, her2neu+++
8/19 taxotere and herceptin
1/15/2005 Navelbine/Herceptin
4/2005 radiation and Herceptin
5/15/2005 Herceptin alone
2/12/2008 skin biopsy positive
2/14/2008 met to sternum, possibly right breast
2/27/08 Start omitarg, herceptin, taxotere trial
3/17/08 Kicked off trial because I started too close to my last herceptin
3/19 start tykerb xeloda
Right breast confirmed met
5/15/08 skin mets gone, no hypermetabolic activity in breast, sternum healing
8/24/08 scans still look good. sternum still active with scarring. No evidence of progression
10/08 Progression in sternum
12/08 Start TDM1 trial
1/09 Scans show stable
12/09 1 year on TDM1 still stable
10/10 progression in chest and liver
11/10 false positive of liver mets; tykerb and herceptin
4/11 Tykerb/Herceptin/Xgeva
4/11 Rads to Sternum
5/12/12 NED Herceptin/Zometa
3/16/19 still NED Herceptin/Zometa very 6months
|
|
|
|
|
05-08-2011, 02:56 AM
|
#8
|
|
Senior Member
Join Date: Jul 2009
Location: Sardegna, Italy
Posts: 362
|
Re: Calling all stage iv sisters
So encouraging to read these thoughts from all of you amazing women! Thank you for sharing!
__________________
Karen Wheelhouse Age: 46
Facebook id: Karen Wheel
2-09 – Age 44 -Biopsy-Cancer
3-09 – Right Quadrantectomy. Clear margins.
3 lymph nodes taken - all clear
Tumor results: Stage 1, 1.5 cm, Her2 +++
Est positive 80% - Prog 10% - Ki67 postive 30%
4-09 – Became a vegan! pH balance of body - cancer can't grow in neutral pH!
4-09 Started Herceptin & Chemo (9 weeks of Navelbine *)
* FYI - when coupled with Herceptin has the same results as more toxic chemo. No brainer!
8-09 - 30 RADS
9-09 - Said NO to hormone therapy
4-10 Finished Herceptin!!!!
7-10 PET Scan & other exams .... All clear! YIPPEE!!!!
11-10 Breast, organ Ultrasounds and lung x-rays all clear no changes ... NED!
2-25-2011 --- 2 years from surgery and NED!!!!!!
7-2011 Clear bone scan and full body and head MRI! NED! NED! NED! ;-)[/SIZE]
|
|
|
|
|
05-08-2011, 03:07 AM
|
#9
|
|
Guest
|
Re: Calling all stage iv sisters
Diagnosed with Stage IV in January 2007. In remission since finishing initial round of chemo. Herceptin infusion every 3 weeks for rest of my life (or until something better is invented), scans every 4 months. Work full time, exercise, completely normal quality of life. I feel incredibly blessed and am thankful every single day.
|
|
|
|
|
05-09-2011, 07:12 PM
|
#10
|
|
Member
Join Date: Feb 2010
Location: Wisconsin
Posts: 13
|
Re: Calling all stage iv sisters
stage 4 for 4 years
__________________
diagnosed 1/07
bilateral mastectomy 2/07
chemo 4-6/07
started Herceptin 4/07
radiation to lower back 8/07
reconstructive surgery 6/08
off herceptin 5/09
radiation to neck 8/09
hysterectomy 9/09
started Arimidex 10/09
off Arimidex, started Femara 3/10
|
|
|
|
|
07-10-2011, 07:18 PM
|
#11
|
|
Senior Member
Join Date: Dec 2006
Location: Oregon
Posts: 715
|
Re: Calling all stage iv sisters
Great thread...great positive ladies! And it seems there are a lot of very good doctors and nurses out there helping everyone. Congratulations! I feel so lucky to be part of this site.
__________________
Catherine
Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
|
|
|
|
|
08-05-2011, 01:47 AM
|
#12
|
|
Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
|
Re: Calling all stage iv sisters
Name ____________Er Pr Her2 (Initial Diagn) Stage IV Diagnosis_________Clinical. Trials______Triumph years since Stage IV ___ (NED = No Evidence of Disease)
Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung ________T-DM1_____________ 7 year 11 months and counting
Ahoff (Ann) ____________________________May 2010 IBC ______________________________ 1 year 6 months and counting
Angela R _____________________________ (2009) April 2011 _____________________________3 months and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine _________________________9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain _________________________ 7 yrs 2 months and counting (NED)
@cdbernal (Charlyn)_________________________Aug? 2006Liver __________________________5 yrs and counting]
Ceesun (Cathy) _________________________June 2006 Lung ______________________________5 yrs and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 5 yrs 7 months and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 6 yrs 10 months and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur ________________ 5 yrs 9 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver _________________________ 2 months and counting
CourtneyL _____________________Er- Pr- Her2+ April 2008 Liver Lung (NED) Bone Brain ________ 3 yrs 3 months and counting
DEBBIE S______________________Er- Pr- Her2+ Oct. 2004 Liver ___________________________ 6 yrs 9 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 9 months and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial ___ 1 ½ years and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung __________________________ 11 yrs and counting
DianaMK ________________________ _(Dec 2006) June 2010 Skin Lung ______________________ 1 yr 1 month and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _2 yrs 2 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 5 months and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone _____________ 1 yr 6 months and counting (NED)
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver____________________________ 4 yrs 5 months and counting
Flossie__________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck _____________________ 3 yrs and counting
@Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial ______ 5 yrs and counting
@Gracepang _________________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain _________________ _1 yr 11 months and counting
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs ______________________ 3 months and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1_____ 5 yrs 11 months and counting
Jenan _______________________ (June 2010 IIIA) April 2011 Brain (WBR) ____________________ 3 months and counting (all clean)
@jkdowl _____________________(Dec 2010 III) Feb 2011 Bones _____________________________6 months and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED)___________________ 4 yrs 6 months and counting
Joan S. _____________________________________April 2007 _____________________________ 4 yrs 4 months and counting
Kathy T_____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs)_________ 8 yrs 6 months and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver _____________________ 5 yrs 8 months and counting
KDR (Karen) __________________ Er- Pr+ Her2 + June 2010 Liver____________________________ 1 yr 1 month and counting
Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine______ 9 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)________ 3 yrs 5 months and counting
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ________________________ 6 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 2 months]
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain _____________________________ 6 months and counting
Lauriesh (Laurie) ____________________________ July 2010 2 Liver mets (RFA) ________________ 1 year and counting (4 months NED)
Linda b ___________________________ Er+ Her2+ Jan. 2007 Lower back & Neck ________________4 yrs 2 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ____________________________ 3 yrs 7 months and counting
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _______7 yrs and counting (NED)
Marilyn _______________________________ (2000) July 2001 Bones ________________________ 10 yrs and counting
Mary L____________________________(Oct 2003) July 2004 Skin____________________________7 yrs and counting (NED since Oct 2007)
@Michka______________Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver (NED) June Sternum ___________ 8 month and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 4 yrs 11 months and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver _____________________________2 months and counting
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________2 yrs 5 months and counting (NED)
Nsebesta _______________________________ (2001) May 2004 Liver _________________________7 yrs 2 months and counting (NED since 2005)
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)_________________ 8 yrs 10 months and counting
PatE _______________________________________Oct 2007 Liver spine ______________________ 3 yrs 9 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ________ 10 months and counting
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011Vertebrae, Liver ____________________ 4 months and counting
Radiant __________________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes _________________ 1 yr 7 months and counting
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ____________________________________ 3 yrs 7 months and counting (NED since 4-16-2008)
Sheila _______________ Er- Pr- Her2+ (Feb 2002) Sept. 2003 Neck nodes _______T-DM1(3) _________7 yrs 10 months and counting
Sherryg683 __________________________________ Dec 2005 Lungs _________________________ 5 yrs 7 months and counting
SoCalGal _____________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain ________________4 yrs 4 months and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ___________________________ 8 yrs 6 months and counting (NED since 2005)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver____________________________________3 yrs 10 months and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip ______________________________7 yrs 4 months and counting
Tonya ___________________________ Aug 2006 Liver ____________________________________ 4 yrs 11 months and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung _____________________________ 21 years and counting
Trish ____________ Er (2+) Pr (3+) Her2 (3+)(May 2004) Dec. 2006 Liver 2008 Bone _________________ 4 yrs 7 months and counting
Unregistered _____________________ Jan. 2007 __________________________________________ 4 yrs 6 months and counting
Vicky____________________________March 2011 Liver Spine_______________________________ 4 months and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 4 months and counting
@Waterdreamer___________________June 2008 Nov Lungs and bones ________T-DM1___________3 yrs 2 months and counting
Yankeebikachic ___________(April 2006 IIIC) July 2008 Nodes in sup. clav._______________________ 3 yrs and counting (NED)
Total 71 members* and 309* years 5 months as of August 8, 2011
@ - members gleaned from other threads
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."
*Including Christine ((1990) 1999 Chest Brain NED 2001~) and AndiBB ((1995 Lobular) 1998 Liver NED 1999~), those who have posted on this thread, and members gleaned from other threads.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
Last edited by Jackie07; 08-08-2011 at 07:57 PM..
|
|
|
|
|
03-06-2012, 10:21 AM
|
#13
|
|
Member
Join Date: Oct 2010
Posts: 18
|
Re: Calling all stage iv sisters
2.5 years and counting! Some 'inconvenient' moments along the journey for sure but still going strong~
Never, never, never give up!
__________________
6/09 - self exam - lump!
8/09 –Dx - IDC, left breast. Suspicious mass,right breast (more testing required).
9/09 - Double mast/cholecystectomy /nodes removed. IDC confirmed, right breast. liver/bone mets. ER-/PR -/Her2 +. BRCA 1/2 -.
10/09 - Started Taxotere, Carboplatin, Herceptin, Zometa. Hospitalized with Tetany.
1/10 - Finished Taxotere, Carbo, continued Herceptin, Zometa. PET/CT - improvement.
2-3/10 - Rads (25 rounds).
8/10 – inflammation vs. malignancy?
1/11 – progression. started Xeloda.
9/11 – progression. pancreatitis or tumor? Chest ‘rash’ appeared.
10/11 – confirmed pancreatitis. Halted Xeloda.
11/11 – skin mets confirmed.
12/11 - started Tykerb, back on Xeloda.
1/12 – cut Xeloda dose in ½. skin mets fading!
4/12 - no more Xeloda. skin mets resolved.
8/12 - brain mets found.
9/12 - gamma knife and fractionated brain radiation.
1/13 - progression throughout body. brain mets shrunk/resolved. no more Tykerb.
2/13 - starting T-DM1 trial.
|
|
|
|
|
03-06-2012, 09:42 PM
|
#14
|
|
Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
|
Re: Calling all stage iv sisters
Current stats:
Total 108 members* and 458 * years 5 months as of March 25, 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 Diagn) Stage IV Diagnosis _________ Clinical. Trials _______ 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 8 months and counting
Ahoff (Ann) ____________________________May 2010 IBC _________________________________ 1 year 10 months and counting
Alex1 ___________Er- Pr- Her2+ (Feb 2010) Aug 2011 Liver, lymphatic, skeletal _______________ 7 months and counting
AndiBB ________ Er-Pr-Her2+ (July 1995 IV ILC) Aug 1998 Liver ____Herceptin 10 years ______ 16 years 8 months and counting (NED since 1999)
@ Angela ( - NC) ________ Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife) __5 years 3 month and counting
Angela R _____________________________ (2009) April 2011 _____________________________ 11 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 _________ 4 years 2 month and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine _______________________ 9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain ________________________ 7 yrs 10 months and counting (NED)
Bevilj _____________ Er- Pr- Her2+ (June 2009) bil. Mast. liver, bone 2011 skin _______________ 2 years 6 months and counting
@Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver _____________ 4 yrs 5 months and counting
@cdbernal (Charlyn) _________________________ Aug? 2006Liver __________________________ 5 yrs 7 months and counting]
Ceesun (Cathy) _________________________ June 2006 Lung _______________________________ 5 yrs 9 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 2 yrs 6 months and counting
Choyces (Tina) __________________ July 2011 neck node and lung __ waiting for vaccine trial ____ 8 months and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 7 yrs 6 months and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur _______________ 6 yrs 5 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver __________________________ 10 months and counting
CourtneyL _____________________Er- Pr- Her2+ April 2008 Liver Lung (NED) Bone Brain _________ 3 yrs 11 months and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) _________ 3 yrs 1 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) __________________________________________________ ___________________________________ 10 months and counting
@dchips1 (Darita) ______Er- Pr- Her2+ Jan 2006 Liver/pelvis 2007WBR osteonecrosis 2009 GKRS 6 years 2 months (1/2011 NED)
DEBBIE S ______________________ Er- Pr- Her2+ Oct. 2004 Liver ____________________________ 7 yrs 5 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 1 year 5 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 9 months and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _ 2 yrs 10 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 2 years 1 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 2 month 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 1 month and counting
Flossie __________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck ____________________ 3 yrs 8 months and counting
Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial ______ 5 yrs 7 month and counting
@Gracepang _________________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain ________________ 2 yrs and counting
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs _____________________ 11 months and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1___ 6 yrs 7 months and counting
iamlisaann (Lisa) __________ Er- Pr- Her2+ (June) July 2006 Liver Brain ___UCSF Avastin/Tykerb __ 5 years 8 months and counting (NED)
Jacqui ______________Er-Pr- Her2+ (Oct. 2009) Feb. 2011 Brain (VMAT radiation) _____________ 1 year 1 month and counting
Jeana _______________________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung _______ 11 months and counting
@jkdowl _____________________ (Dec 2010 III) Feb 2011 Bones ____________________________ 1 year 1 month and counting
@jml (Jessica) ________ May 2002 Liver 2007 supclav. Node 2010 Brain Novalis 2010, WBR 2012 _ 9 years 10 months and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED) _________________ 5 yrs 2 month and counting
Joan S. _____________________________________ April 2007 _______________________________ 4 yrs 11 months and counting
@KaiM _________________Er- Pr- Her2+ (Sept 2011) Nov. 2011 Bones and Liver________________ 4 months and counting
Kathy T _____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs) _______ 9 yrs 2 month and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver ______________________ 6 yrs 4 months and counting
KDR (Karen) __________________ Er- Pr+ Her2 + June 2010 Liver _____________________________ 1 yr 9 months and counting
KG1993 (Kim for her Mom) _____________Her2 + Aug. 2011 Bone Liver _______________________ 7 months and counting
Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine____ 10 1/2 yrs and counting (6 yr NED)
Kim in DC ____ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum _____ T-DM1 (2 yrs) ___ 4 yrs 1 month and counting
Kiwigirl _______________Er-Pr- Her2+ (Oct 2009) Feb. 2011 Brain (VMAT radiation) ____________ 1 year 1 month and counting
kk1 ___________________Er+Pr+ Her2 ________ March 2004 spots on liver ___________________ 8 years and counting (NED since 2009)
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ______________________ 1 year 2s months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 10 months and counting
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain _____________________________ 1 year 2 month and counting
KsGal _____________ Er-Pr- Her2+ (Oct 2011) Dec 2011 Liver ________________________________ 3 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ___________________________ 4 years 1 month and counting
Laura4252 ____ (High grade DCIS 2005) recur 2009 April 2011 Left Lung _______________________ 3 years and counting
Lauriesh (Laurie) ____________________________ July 2010 2 Liver mets (RFA) ________________ 1 year 8 months and counting (6 months NED)
Lettik _______________ Er- Pr- Her2+ November 2009 Liver mets _TDM1 2010 ; Everolimus 2011 __ 2 years 4 months and counting
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ________________ 5 yrs 1 month and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver _____________________________ 4 yrs 5 months and counting
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _____ 7 yrs and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3 __ 9 months and counting
Marilyn _______________________________ (2000) July 2001 Bones _________________________ 10 yrs 8 months and counting
Mary L _______________________ (Oct 2003 IBC IIIB) July 2004 Skin __________________________ 7 yrs 8 months and counting (NED since Oct 2007)
@Michka______________Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver (NED) June Sternum _________ 1 year 3 month and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 5 yrs 7 month and counting
Mollecat _________________________ July 2011 nodes by lung, above clavicle, in neck _________ 8 months and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver, lung ________________________ 10 months and counting (NED 12/05)
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________ 3 yrs 1 month and counting (NED)
Ninjalyn ______________________ March 2011 lungs and chest wall Navelbine/Herceptin now Herceptin/ Arimidex 1 year and counting
Nsebesta _______________________________ (2001) May 2004 Liver __________________________ 7 yrs 10 months and counting (NED since 2005)
PAFB ____________________________ (Jan. 1997) Jan 1998 Metastasis ____ Herceptin till 4/2011 _ 13 yrs 2 month and counting
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)_______________ 9 1/2 yrs months and counting
PatE _______________________________________ Oct 2007 Liver spine ________________________ 4 yrs 5 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ______ 1 year 6 months and counting
@Peggy09 ____________________________________ Feb. 2010 Liver, bone, lymph nodes ________ 2 yrs 1 month and counting (NED)
Phil (‘s wife) ___________________________________________ 2006 ___________________________ 5 years and counting
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ________________ 1year 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 _________________________ 1 yr 4 months and counting
Ricky (‘s wife) _______________________________ 2006 Liver ________________________________ 5 1/2 years and counting (3 + years NED)
Sandra Digilio ______________________ (Dec., 2009) Sept. 2011 3 spots in bone _______________ 6 months and counting
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ___________________________________ 4 yrs 4 month 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 1/2 yrs and counting
Sherryg683 __________________________________ Dec 2005 Lungs __________________________ 6 yrs 3 months and counting
SoCalGal (Flori) _________________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _ 5 yrs and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ____________________________ 10 yrs 2 month and counting (NED since 2005)
Survivor2be (Andrea) _________triple – (Sept 2010) 9/2011 Her2+ brain ______________________ 6 months and counting (4+ weeks NED)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver ____________________________________ 4yrs 6 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 _______ 8 months and counting
@Tiquer505 _____________ Er- Pr- Her2+ (1997) Four recurrences so far ______________________ 5 yrs and counting
Tonya ___________________________ Aug 2006 Liver ________________________________________ 5 years 7 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 2 month and counting
Unregistered (8-25-2011 #106) __________________________________________________ _________ 9 years and counting
Vicky ____________________________ March 2011 Liver Spine _T-DM1 lungs brain 2-2012 Halaven_ 1 year and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 1 year and counting
@Waterdreamer ___________________ June 2008 Nov Lungs and bones ________ T-DM1 _______ 3 yrs 9 months and counting
Yankeebikachic ___________ (April 2006 IIIC) July 2008 Nodes in sup. clav. _____________________ 3 yrs 8 months and counting (NED)
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
Last edited by Jackie07; 03-25-2012 at 10:33 PM..
Reason: 1
|
|
|
|
|
06-28-2012, 09:07 AM
|
#15
|
|
Guest
|
Re: Calling all stage iv sisters
Diagnosed stage 4 on Oct 26, 2010 with bone mets. I had a weird experience. The bone mets had caused a pseudo-stress fracture of a vertebra, the pain was so bad, I couldn't get out of bed in the morning, my husband had to lift me out. I had to be lifted on and off the toilet! Had my first chemo in early November, after not being able to move on my own for 2 weeks at all. Got out of the chair after a 4.5 hour infusion on my own! It started working that fast-no one could understand it but I could get in and out of the car the day after my first chemo!
They declared me in full remission after my second chemo in Dec. 2010. Onc could no longer feel the HUGE lump that had been there. Onc is predicting that I will go 4 or 5 years without having to change medication, however he assures me that if anything does come back, there are "12 other drugs we can use". He had one patient who was stage 4 and lived 23 years. She died at the age of 80+ from cardiac issues not related to cancer!
Finished the chemo, had a masectomy in April 2011, and now get herceptin and zometa every three weeks. Just had my bi-annual bone and PET scans and am still NED and feel great!
|
|
|
|
|
06-28-2012, 12:45 PM
|
#16
|
|
Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
|
Calling all stage iv sisters
PLEASE SEE MY -- THIS IS MY NOW time -- thread. I wrote it with all you in mind!
Stay strong, brave and determined...
LOVE ALWAYS AND FOREVER,
ANDI BB
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...
'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...
Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
|
|
|
|
|
02-06-2013, 05:26 PM
|
#17
|
|
Junior Member
Join Date: Feb 2013
Posts: 1
|
Re: Calling all stage iv sisters
Not sure if I'm in the right spot. But here is my story. Diagnosed in Aug/2009 with Her2+ Stage 4 breast cancer with mets to the liver. Did 10 months of TCH and now on herceptin only every 3 wks. No surgery was ever offered, 2 years ago was told not a candiate for surgery or for mammograms (was never explained why). Oncologist ordered mammograms & biopsy in Oct/2012 came back as positive. Now offered surgery, after 3 1/2 years, only offered because liver is now clear (no tumors--had 14 tumors) CT scans show all is clear. Has this happened to anyone else. I'm new to this forum. Had a hard time finding some support where I live.
|
|
|
|
|
10-21-2018, 05:57 PM
|
#18
|
|
Senior Member
Join Date: Apr 2018
Location: Western Maryland
Posts: 36
|
Re: Calling all stage iv sisters
This is wonderful. Thank you so much everyone. I'm one of the newbies. I started at Stage 4
__________________
 September 2017: woke up one morning and noticed my wrist was slightly swollen. A puffy wrist. That is how it all started
October 2017: went to orthopaedic surgeon to find out what kind of injury was causing my forearm to swell, orthopaedic surgeon recognizes lymphedema, and sent me to breast clinic
November 17, 2017: biopsy: 4.4x1.7x2.8 mass, IDC
December 2017: treatment by homeopathic physician
January 24 2018: lumps in neck (supraclavical nodes)
January 31, 2018: first appointment with Medical Oncologist
February 1, 2018: first scan, found Mets in bones, possibly liver but inconclusive since I refused dye injection
February 2, 2018: follow up with MO for scan results, he had samples of Capecitabine and advised to take 4 pills every 12 hours for 7 days. Ordered HER2 test which had not been completed on my sample at time of biopsy in November, convinced me to meet with Radiologist, tumor was very large and grown into skin, agreed to try radiation
February 8, 2018: first radiology appointment and first Xgeva
February 9, 2018: follow up with MO, results are back from pathology and my sample is HER2-positive, MO wants me to do this infusion "antibodies" thing...look, I just got my head around radiation, now you want IV stuff????
Febuary 15, 2018: first radiation treatment, cried like a baby
March 1, 2018: first Herceptin infusion, cried uncontrollably
March 2, 2018: radiation treatment halted due to extensive skin damage after just 12 treatments
March 21, 2018: applied to John Hopkins for lymphedema vein bypass surgery
March 22, 2018: second Herceptin infusion, social worker made referral to Physical Therapy for me for lymphedema treatment
March 26, 2018: had assessment for lymphedema and follow up with MO, physical therapist made MO sign waiver because of my active cancer status, MO wants me to add Perjeta to my next infusion...really, more stuff..
April 2, 2018: first lymph drainage massage treatment
April 5, 2018: follow up with Radiologist, skin healed well enough to wear a sports bra...woohoo...not resuming radiation
April 20, 2018: heavy bandages applied to left arm to reduce lymphedema swelling
May 3, 2018: first Perjeta infusion, now on H & P, and Capecitabine, and Xgeva every 3 months
May 30, 2018: first PET scan, came back NEAD
June 15, 2018 discontinue Capecitabine since NEAD
July 31, 2018 Johns Hopkins Plastic and Reconstructive Surgery for consult for Vein Bypass Surgery for lymphedema, surgeon determined I am good candidate and surgery scheduled for October 5th...
October 5, 2018: Lymphaticovenous Anastomosis at Johns Hopkins Hospital. Surgery was poorly done and failed miserably, the swelling is worst than before surgery.
|
|
|
|
|
11-05-2018, 10:38 AM
|
#19
|
|
Senior Member
Join Date: Jun 2014
Location: Monarch Beach, CA
Posts: 88
|
Re: Calling all stage iv sisters
It’s been 5 years since my stage IV denovo dx’d. It’s been quite a journey and not always easy, but I am still here, still receiving herceptin and perjeta every 21 days. There is no end in sight as far as treatment goes, 82 treatments over 5 years! Guess we stage IV thrivers are also multi million dollar metavivors! I wouldn’t be here if it wasn’t for western medicine, brilliant doctors and scientists who can discover and design drugs that keep us alive. Full of gratitude 🙏🏼
__________________
*October 2013 mammogram suspicious lump right breast
*Oct. 2013 Breast MRI reveals 2.5 cm tumor right breast 6-7 nodes positive
*Nov 2, 2013 PET/CT tumor right breast, 6-7 nodes include right axilla and one above clavicle, 3.5 cm lesion on dome of liver
*Nov 4, 2013 meet oncologist: schedule port placement
*Nov 5, 2013 baseline echo 65%
*Nov 13, 2013 start THP six cycles every 21 days
*Nov 20, 2013 blood counts now coming back quickly start neulasta following next treatment, no pain and it worked!
*Jan 19, 2014 syncope, ambulance ride to hospital, cracked a tooth and chipped three, six stitches in chin, CT scan shows brain is ok but am required to follow up with neurologist.
*Jan 28, 2014 PET/CT shows great response to THP
*Jan 28, 2013 echo, all is good 60-65%
*Feb 2014 brain MRI, no missing parts and no extra parts, all clear
*Feb 27, 2014 last treatment with taxotere
*Apr 22, 2014 PET/CT shows complete pathological response to THP amen!
*Apr 22, 2013 echo 60%
*continue vitamin H and P every 21 days until...eternity?
*May 2014 emotional melt down, demand port be removed.
*May 22 2014, biopsy of original tumor rt. breast, no cancer cells in 8 tissue samples, amen
*June 2, 2014 Port removed, happy dance! Just couldn't tolerate the port any longer; it never worked properly and was extremely uncomfortable
*July 24, 2014 echo 60%
*August 28, 2014 PET/CT all clear NED
*Oct 29, 2014 echo 65%
*Feb 4, 2015 PET/CT NED!!!
*Feb 4, 2015 Echo 65-70%
*May 19, 2015 mammogram all clear
*May 19, 2015 Brain MRI all clear!
*August 18, 2015 PET/CT NED!!! amen!
*March 8, 2016 CT w/contrast NED
*March 10, 2016 Echo normal
*June 2016 Echo normal
*September 7, 2016 CT scan w/contrast NED
*September 8, 2016 Echo normal
* still receiving infusions every 21 days of Perjeta and Herceptin with no end in sight......
*March 2017 CT scan NED and echo normal
*May 2017 mammogram all clear!
*November 2017 CT scan NED and echo normal
*May 2018 echo normal
*December 2018 ct scan with contrast and nasty drink-all clear!
"Better pass boldly into that other world, in the full glory of some passion, than fade and wither dismally with age."
|
|
|
|
|
05-07-2011, 09:39 PM
|
#20
|
|
Junior Member
Join Date: Jun 2009
Posts: 2
|
Re: Calling all stage iv sisters
I also have been observing since dx 5/09 stage 3a-now as of 2/26 stage IV to mediastinal lymph nodes and left lung. Having hard time, children are 3 and 5, and I love them with all my breaking heart. Thank-you for your positive story and support. Sometines it's those people we never meet that we touch the most. (DQ1)
|
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 07:43 PM.
|
Hybrid Mode