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09-22-2009, 02:47 PM
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#21
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Cancer is back...I just knew it.
I am so sorry to read your news. By all means a second and possibly a third opinion is a good idea. It looks like Joe had some good suggestions in that area. Bring a tape recorder, a notebook and a pen to all appointments with oncologists. Ask the doctor if you can record the conversation first. Most will agreee. Otherwise take notes and ask the doctor to write difficult words and draw diagrams of the affected areas. Ask the doctor for more than one treatment option. Be sure to get all your concerns and questions addressed. Good luck. Hang in there and keep going no matter what happens.
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09-22-2009, 04:19 PM
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#22
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Re: Cancer is back...I just knew it.
Hi Chelee,
I am shocked and so sorry. After you begin to navigate this new road, you will start to learn about the new trials and options that are open to you now and in the future. I have been living with stage 4 for 5 years and am still here and working. Right now my heart goes out to you because no one wants to hear this news.
Thinking of you.
Barbara H.
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09-22-2009, 04:32 PM
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#23
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Senior Member
Join Date: Oct 2005
Posts: 823
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Re: Cancer is back...I just knew it.
Oh No not what I wanted to read from you. Just know prayers are with you. I do hope you can find another Onc WHO WILL LISTEN TO YOU!!!
__________________
Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
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09-22-2009, 04:59 PM
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#24
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Re: Cancer is back...I just knew it.
Chelee
First of all, I wish I would have been there to go with you today. I can understand your frustration and anxiety after "feeling" there was something wrong for so long, then to get that confirmation. Take a deep breath, then decide on a plan, which i know will be getting another opinion or more. I know that traveling for treatments can be a pain in the butt, but you need to go somewhere where your "team" listens to you and values your opinion. I have been on the mets roller coaster for 6 years now, and although its not easy at times, it is do able. You need to take control, and get your game plan together....you are strong, and know how to fight, and we are all here for you in any way you need us.
This is another stumbling block, that you will climb over and kick to the side...so you can continue your journey. Sending prayers and a big hug, and much strength, although you have already proven how strong you are!
__________________
"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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09-22-2009, 05:02 PM
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#25
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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Re: Cancer is back...I just knew it.
I am so sorry and send TONS of hugs and prayers...Please stay positive, look at all the LONG time survivors on the board not to mention all of those that DON'T post on here. Take care.
__________________
Rhonda
Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)
2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)
" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
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09-22-2009, 05:11 PM
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#26
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Re: Cancer is back...I just knew it.
I'm so sorry this is happening to you. I know everything is a blur right now. I had a chest wall recurrence also. Even though rads are out, you can do hyperthermia with chemo on the chest wall area. I think there are trials now doing this. So they would give you chemo (doxil, I think) and heat up the chest wall area to make the chemo more effective. Just another option.
Hang in there. I now it's not easy. Like Julie said, I too, just wanted the cancer gone so I jumped quickly into treatment. But it is really hard to think under the circumstances. Explore all your options.
I know that life is easier on my husband when he can keep his mind on work and not on my cancer. Maybe your husband was just trying to cope with the news. Still, It's doesn't make it any better for you.
Holding you close in thoughts and prayers,
Tonya
__________________
DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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09-22-2009, 05:17 PM
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#27
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Re: Cancer is back...I just knew it.
Oh, Chelee, I am so sorry that you had to write those words to start this thread...I'll say it again...cancer sucks. It does sound like you need a different, more caring and approachable team. I think Jean, on this site, actually got in to see Dr. Slamon at one point, you might try and ask her how she did that. PLEASE do not let this discourage you for too long, you need all your energy to go on the attack once again. Fear is such an overwhelming feeling, turn it around and use it to your advantage !!! Much love, Suzan
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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09-22-2009, 06:33 PM
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#28
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: Cancer is back...I just knew it.
Chelee,
I am sorry to hear of your recurrence - but I know that you are one tough chick and you will fight it with everything you have, and we will be at your back!
Vent all you want, that's what we are here for.
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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09-22-2009, 06:38 PM
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#29
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Senior Member
Join Date: Oct 2007
Posts: 203
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Re: Cancer is back...I just knew it.
I am so sorry -- but at least you did know it and you pushed! Think of how much you have learned to advocate and take care of yourself.
I'm sorry about your husband, too, but maybe you should just tell him "I need you now." It sounds like he didn't know what you wanted...
I am praying for you and your loved ones.
Rebecca
__________________
Dx 8/06 Age 43 Stage IIIA multifocal throughout breast, largest tumor 5 cm, grade 3, comedo, ER+PR+HER+++
Neoadjuvant A/C 4X Dose Dense
11/06 Bilateral Mastectomy (no choice on the right, my choice on the left)
Taxol+Herceptin weekly x12, continuing with Herceptin, finished one year in 12/07
33 Rads
Femara for 5+ years, staying on (started with Arimidex, switched after about a month, much happier)
Abnormal brain MRI shows no cancer, but "extensive white matter diease" - unknown cause
BRCA negative - lots of cancer in my family
survivor of thyroid cancer
also have Crohn's disease
CT and bone scan say NED as of 5/13
dx with severe cardiomyopathy 5/12 (likely due to chemo and Herceptin), ejection fraction in low 20's, now up to 40, went to 50, latest read 12/13 is back down to 35
1/13 Acute pancreatitis - are you kidding me?
9/13 started Humira for Crohn's. starting to have some energy again
B12 and Vit D both needed supplementation
Cataracts in both eyes noted 6/12 - surgery in the next 2-4 years?
4/14 Kidney stones/blockage/infection - related to Crohn's Disease
5/14 My aunt passed away - she was diagnosed after I was with Stage I - not Her2+, then Stage 4 for about one year
6/14 Scans - still NED, thank God. However, broken rib (I didn't notice) lots of bone degeneration osteopenia/osteoporosis. I also still have cardiomyopathy secondary to chemo.
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09-22-2009, 06:44 PM
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#30
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: Cancer is back...I just knew it.
I am so very, very sorry for your miserable news. I will be praying, Chelee.
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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09-22-2009, 07:13 PM
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#31
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Re: Cancer is back...I just knew it.
Chelee,
My heart sank when I saw your post. Please know I am keeping you in my thoughts and prayers and am her for you.
Please do seek other providers that will be a part of your team and who you will be comfortable with attending to your needs and concerns.
Your strength will be your asset as you move forward.
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14 YEARS NED!
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09-22-2009, 07:18 PM
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#32
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Senior Member
Join Date: Jul 2008
Location: New Boston, NH
Posts: 275
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Re: Cancer is back...I just knew it.
just wanted to send out a big hug to you! I'm praying for you.
__________________
-Sarah-
Jan '07 felt lump (PCP "thought" it was a cyst)
Nov '07 "bloody nipple discharge" (OB-GYN "thought" I had fibrocystic breasts and told me to take 400 IU's of Vitamin E)
Note: Mother was dx w/BC in 2004 (ER/PR+ & HER2+) & mets to brain April 2007 (she passed away June 17, 2008)
2/1/08: Biopsy Dx: DCIS (age 34)
2/22/08: Surgery R-side Mast
2/28/08: 1st Path Rpt Dx: IDC 1.8cm tumor & DCIS 2.1cm
2nd Path Rep DFCI - IDC (0.9cm) & DCIS (2.1cm)
Stage 1b/Gr 3; ER+(5%), PR+(2%), HER-2+++
5/5 nodes NEG; Clear Margins
Chemo: AC 4 rnds (1st one 3/31/08) finished 6/2/08
TH (Taxol/Hercepin) 12 weeks (1st one 6/25/08) finished 9/8/08
Herceptin 9 mos (every 3 weeks) finished 6/8/09
BRCA 1/2 NEG
Bio: Age 39, married to James 1999, 2 boys 12 & 10 yo
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09-22-2009, 07:30 PM
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#33
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Cancer is back...I just knew it.
Chelee,
I always loved to see your Golden Hamster on your avatar. And I always enjoyed your postings. You are one tough cookie. And I know you will get through this.
Caregivers are just human like you and me. They have their own problems and priorities. I was told not to drive any more, so I'll have to completely depend on my husband. (Picked up a special transit application - $4.00 round trip from the residence for medically qualified patient - but haven't filled it out yet.)
Give us a report on your appointment. And I hope tomorrow is a brighter day for all of us.
__________________
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; 09-24-2009 at 12:09 PM..
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09-22-2009, 07:33 PM
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#34
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Senior Member
Join Date: Apr 2006
Posts: 131
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Re: Cancer is back...I just knew it.
I am so sorry that you had to hear this diagnosis. Please be assured that prayers are being sent up for you.. You have a lot of people praying for you... and that includes me.
Charlotte
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09-22-2009, 07:46 PM
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#35
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Senior Member
Join Date: Oct 2007
Location: Portage, IN
Posts: 198
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Re: Cancer is back...I just knew it.
I just wanted to say that I am so sorry that you received the news that you did. You are in my thoughts and prayers.
__________________
10/15/07: Diagnosed at age 46 lymph node removal (2)
ER/PR - Her2 +++
11/07: Port Installed
11/07 - 1/08: AC
1/30/08: Right Mast Stage lllC
2/28/08: Start Taxol and Herceptin weekly.
5/15/08: Finished Taxol
8/12/08: Finished 33 Rads
1/29/09: Finished Herceptin
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09-22-2009, 08:56 PM
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#36
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: Cancer is back...I just knew it.
Chelee,
I can just imagine the frustration with your onc, and I don't blame you. After all, you'd been complaining about symtoms for a few months and your markers were out of the normal range.
Do check out your options, because you might be able to have rads to the chest wall. As Joe pointed out, some of the new machines really target a lesion. The beam "bends" to avoid healthy tissue. I had this type of beam to the head after the brain tumor was removed. And Tonya suggested hyperthermia and chemo, which is being brought back to fight cancer that has spread to the chest wall.
I'm sending you good vibes for finding the right solution.
Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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09-22-2009, 09:47 PM
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#37
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Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
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Re: Cancer is back...I just knew it.
Oh Chelee,
This was not the news we wanted to hear. I am sure that at this point you are still numb (sometimes a good thing) but hopefully tomorrow you can get up, regroup and start making some plans. It looks like it is time to get some other opinions - you have some excellent options to look into right in your neighborhood. I had the pleasure of hearing Dr. Link speak at a conference and I must say I was quite impressed. He seemed to know a lot about HER2+ cancer and he shouldn't be too far for you. As you know, COH has some excellent doctors, as does St. Joseph's, just make sure you get a bc specialist this time around.
You can do this Chelee, I know you can. We are all pulling for you. Please keep us updated.
Take good care,
Gerri
__________________
Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
********** Enjoy the little things, for one day you may look back and realize they were the big things. - Robert Brault
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09-22-2009, 10:12 PM
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#38
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Senior Member
Join Date: Feb 2007
Location: Cordoba, Mexico
Posts: 672
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Re: Cancer is back...I just knew it.
Dear Chelee,
I know that there are no words that could give you confort at this time. I just want to mention two things. First, that we will all be praying and that we will all be here for you as we have always been. Second, I had a hypertensive crisis today while still at work and ended up seeing my onc surgeon for a check up, I was so desperate at the moment, during his conversation, he mentionned the case of a girl who developed metastasis to the bones due to bc, this was 20 years ago, she is doing fine and well, so, even when you may feel bad right now, be sure that there is treatment that can help you out there. I also know a lady that has same situation, she is doing great and enjoying life at age 72. We all love you.
Paty
__________________
Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
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09-22-2009, 10:21 PM
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#39
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Cancer is back...I just knew it.
Thank you all for the support because I really need it right now. I am doing this alone and its so hard. I'm feeling so over whelmed today I can't think straight. I know you guys are the only ones that really get "it"...no one else can.
Joan I am writing down every suggestion people give me. The Gamma knife & hyperthermia both Joe & Tonya brought up. I don't plan on missing anything this time around. The first time they played on my fears and won. I am so thankful for this Her2 board because without it I would be so alone. Right now I don't know what I feel...a combination of so many things. I always knew I could recur...but I honestly believed I was going to make it. Living in denial I guess.
I know I plan on going up to COH to see the onc Joe recommended if she is seeing new patients. She has an impressive backround...she also mentions she loves working with woman. I would like to get a total of 3 opinions if I can get it done quick enough. My onc told me Dr. Slamon is not seeing any patients anymore? I asked if she meant HMO patients? She said he is not seeing HMO or PPO? Hummm? Does anyone here know if that is true? (I really wanted to see him.)
Is there any place on the net that lists which cancer centers have the best outcomes for Her2 bc? I use to have a list of which centers treated what types of cancers and which ones had the better outcomes...I can't seem to find that. Anyone know? I'm on overload big time.
Chelee
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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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09-22-2009, 10:35 PM
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#40
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Re: Cancer is back...I just knew it.
Dear Chelee,
This SUX big time! I am so sorry. Try not to visit "what if", as it doesn't help at all.
I bet your husband is just plain scared of losing you. He may need some time to adjust. That's what men do, when they are scared: they withdraw. Or at least, most of them do.
If you need someone with you today, tomorrow, the next day, ask a friend. A stable, sensible, good good friend, if you possibly can. I did. I didn't want the extra stress of dealing with my husband's emotions.
Love
Jacqueline
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Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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