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07-30-2008, 11:38 AM
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#1
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Member
Join Date: Jul 2008
Location: Clearwater, FL
Posts: 10
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follow-up treatment and care
Hello everyone. I am new here and I am delighted to read your posts.
I am 43 y.o, diagnosed Aug/07 with Stage IIB, ER- PR-, HER2+ Grade 3. I did chemo AC and Taxol, 32 radiation treatments and am now just receiving Herceptin every 3 weeks. I am looking forward to the last treatment day on Dec 12/08.
I came from the Philippines but I sought to be treated here in the US. I am scheduled to go back home as soon as my treatment is over.
But I would like to know: what follow up treatments and tests did your oncologist recommend after your last treatment day, when and how often?
Thanks a lot! Be blessed everyone!
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07-30-2008, 02:42 PM
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#2
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Senior Member
Join Date: Sep 2006
Location: Marengo, IL
Posts: 518
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Welcome Bebol,
Your treatment timing mirrors mine but one year later!
Many oncs here do not do follow up treatment after Herceptin (except for mammos and mugas) and rely on symtoms for future tests. It felt strange not to be in active treatment but that passes quickly. You will love your freedom. I am sure you are eager to get back to your home. Where are you in the states?
Donna
__________________
Donna
Crystal Lake, IL
Diagnosed 8/4/06 at age 54
Lumpectomy 8/30/06
Stage llA, grade 3, ER/PR-, Her2++
1.7 cm tumor, 1+ lymph node out of 9
Completed 4 A/C, & 4 Taxol with Herceptin
36 rads completed 5/16/07
Mammograms, 7/07 clear
fractured ribs in radiated area 10/07
Finished Herceptin 12/27/07
Mammogram,CT,tumor markers 1/08 - small lung nodules in radiated area, repeated tests 3/08 stable
Mammogram,CT ,tumor markers 6/08 stable
NED 2 years!!
3 years !!!
4years!!!!
4 years, 10 months and 8 day NED, calling it 5 years!!!
Official 5 years 8/30/2011
8/31/ 2012 - 6 years!!!!!!
Last edited by DonnaD; 07-31-2008 at 12:33 AM..
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07-30-2008, 04:17 PM
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#3
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Senior Member
Join Date: Jan 2008
Posts: 305
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Where I live they would have you come quarterly for the first year and do blood work, they only do CT's if there is a reason to suspect a problem.
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07-30-2008, 04:28 PM
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#4
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Bebol,
When you return to your home, would you stop by Taipei and tell my Mom that I am doing fine here? 
I have a college basketball team member who also had a stage IIB breast cancer surgery more than a year ago. I wonder if you can get the follow-up treatment in Taiwan if not in the US.
Your doctor will be the one that can give you the best advice about follow-up.
__________________
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
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07-30-2008, 07:29 PM
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#5
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Hi Bebol,
My follow-up tx is seeing my onc. every few mos. She doesn't order bloodwork for every appt. Scans are only done if I have a persistent pain that doesn't go away.
Congrats on completing your chemo and radiation txs! I hope the herceptin is not too hard on you and Dec. will be here before you know it!
Hugs,
Lexi
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07-30-2008, 09:36 PM
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#6
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Bebol, Welcome to the board. My follow-up appts are every 3 months...& I am currently 2 yrs & 6 months out from DX. As far as scans go most oncologist don't do them unless you have symptoms. I have pushed to get them because of my stage III status and positive nodes. I also make sure I get a brain MRI at least once a year. But that is not the standard as I mentioned.
It just happens to be my 3 month appt in the morning. So every 3 months I do have my labs a week prior to appt which included a complete CMP, CBC, CA27-29, and FSH & estradiol. Congratulations on getting through treatment. The herceptin will be a peace of cake after what you've been through.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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07-31-2008, 08:11 AM
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#7
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Member
Join Date: Jul 2008
Location: Clearwater, FL
Posts: 10
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Dear Donna, goops, Jackie07, Lexigirl, Chelee,
Thanks for the warm welcome, everyone! Your responses enlightened me a lot. I guess I have to kinda start letting go from wanting to cling to the security of regular treatment, although I do look forward to going back home where my work and life is. I believe "being home" will largely contribute to my healing.
Donna, I am in Clearwater, FL and for some reason, I have not met too many HER2+ sisters down here. So I am glad to be in this site where you are showing me so much strength and tenacity. Hugs to you all!
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07-31-2008, 06:53 PM
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#8
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Bebol
Welcome to our group...lucky you living in Clearwater...i have flown into the airport there, I have family in St Petersburg....I have no idea why I live in Illinois...Florida is where I feel i would be happiest. One of our group Members, irene, lives in Tampa...pretty close to where you are.
Again, welcome to our group...you will find so much love, understanding, information and great friends who know what you are dealing with...this group is the best!!!!!!!
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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07-31-2008, 08:28 PM
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#9
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Hi Bebol,
I would like to welcome you to our support group also. You have found a wonderful place to get encouragement, support and plenty of knowledge from many smart smart sisters and brothers (me not being one of those ) However, I can offer you my encouragement, love and prayers for your journey.
My doc also doesn't do much as far as follow up goes. I am a 3 year NED survivor to date and am on a every 6 month schedule to see my oncologist. He orders basic blood work including liver enyzme and liver function tests. He does a physical exam and talks with me. Scans are ordered if symptoms warrant. My onc. is good about ordering scans if he feels that is what I need or want for peace of mind.
Looking forward to "seeing" more of you on the board.
Love & Peace to you Bebol,
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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08-01-2008, 07:08 AM
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#10
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Member
Join Date: Jul 2008
Location: Clearwater, FL
Posts: 10
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Hello everyone. You're right, mary jo, this is really a wonderful group and I am so glad I found you. I find myself spending more and more time looking peering around the posts. It is not only informative but a wonderful source of encouragement and kindness.
Guess what, Sheila? I am now in St. Pete Beach and will be staying here for a few more days with my sister. Don't you love the St. Petersburg area?
Just another question: since I am just doing Herceptin every 3 weeks, I do get to see my onc every 6 wks. She gets me to do a metabolic profile every 3 wks. So far, my blood tests are within normal range. Does that mean I can also declare myself NED like many of you gals? Technically, when do you start saying you're NED? It just thrills me to read that word in your signatures and posts.
__________________
Found lump through self-exam
Dx 8-15-07.
Stage II-B, 2.5cm, IDC & DCIS
ER-, PR-, Her2neu+ Grade 3
Mets 2/8, Double Mastectomy
Chemo: 4 E/C, 4 Taxol
End of chemo: 2-1-08 ;-)
Radiation & Electron boost: 35 trts
Last rad'n day: 4-22-08! ;-)
Herceptin started 12-21-07; ongoing until 12-12-08
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