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08-23-2012, 03:18 PM
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#1
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Senior Member
Join Date: Jan 2012
Location: Millsboro, Delaware
Posts: 140
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More questions for my HER2 sistas
My question is to all you stage 4 ladies. How did you know when your cancer spread? I've read that headaches are a good indicator that it's moved to the brain, but what about the liver or bones? are there symptoms that we should watch for? I'm also having the same bone pain as KsGal. I've asked my doctor if that could be a sign that it could be spreading and he told me no. I've asked about scans and he didn't feel that I needed them. I've requestedto have blood drawn to know my tumor markers and he told me that they are not a good indicator. Ok, so what should I be
looking for? I'm thinking of looking for a new doctor. I'm driving 3 hours one way to go to the Cancer treatment center of America in Philly and thinking of looking for a doctor closer to home. So glad I found this site!!
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08-23-2012, 05:12 PM
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#2
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Senior Member
Join Date: Jul 2008
Posts: 186
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Re: More questions for my HER2 sistas
If unable to locate a new doctor much closer, Fox Chase Cancer Center also in Philadelphia, has an excellent reputation for patient care.
http://www.fccc.edu/whyChoose/philosophyCare/index.html |
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08-23-2012, 05:18 PM
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#3
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: More questions for my HER2 sistas
I'm being treated at the Hospital of the University of Pennsylvania, in Philadelphia...and I could not be happier with the care I've received.
Hope you can find a doctor who's "on your team" very soon. You deserve it!
Denise
PS- my mom was treated at Fox Chase...and they were great too!
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
β Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. β β Cavett Robert
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08-27-2012, 10:41 AM
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#4
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Senior Member
Join Date: Apr 2011
Posts: 403
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Re: More questions for my HER2 sistas
Hi Valleygirl, let's hope it is nothing serious ! An MRI or PET is usually the best way to tell if cancer has spreaded. Can you schedule a scan with your local oncologist before driving 3 hours to the treatment center?
__________________
1/11 age 36 DX
ER/PR-, Her2 +
TCH*6, Herceptin
BMX with immediate recontruction 5/2011 Lattismus Flap- Dx stage 3c 10/23 nodes
9/11 Radiation
3/12 Local recurrence to skin stage IV
Whole body scan CLEAR
4/12 Tykerb & Xeolda Skin mets slowly regressing
8/12 PET & Brain CT Clear
5/13 Skin mets progressing
6/13 PET scan chestwall recurrence in contralateral anxillary,internal mammary and ipsilateral subpectoral nodes
6/13 kadcyla
10/13 whole body scan -clear NED. previously resolved skin rash gone but 3 new lesions. Biopsy confirmed for skin recurrence
11/13 to 02/14 tykerb & herceptin
02/14 add abraxane/gemzar, 2 weeks on 1 week off at reduced dose
05/14 whole body PET clear/ brain CT clear but skin mets are getting worse, ready for new chemo
05/14 navelbine perjeta herceptin
07/14 skin mets progressing red rash worse
08/14 wide local excision with diep flap to close wound. Final path shows 2 positive margins showing inflammatory carcinoma Going back to surgery in 2 weeks
09/01/14 resection- clear margins
3 weeks after 2nd surgery, a new nodular rash found near drain incision with 2 small red spots behind the chest wall biopsy on 10/1. Positive for breast cancer
Radiation 11/2014 with xeloda then weekly cisplatin
11/14 brain MRI clean
12/14 finished 33 radiations burnt and very painful. Bedridden for 1 week
12/14 t current Herceptin and perjeta only
02/15 rash on upper back right side skin mets radiation planned
02/15 staring electron radiation *35
Stopped at 30 due to severe skin burn, resumed 10 days later
05/15 red patches appeared in between previously radiated area, skin mets. Ct and brain Mri clear. Simulation planned, radiation to start after trip to Alaska.
05/24 new spot identified in scar line on previously radiated reconstructed breast- electron on both side chest wall area and scar line
07/15 multiple skin and lung recurrence begin halaven
11/15 cough much better but very tired on halaven and starting to see some new red skin blotches-suspicious
11/15 heading to China for immune therapy
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08-27-2012, 11:25 AM
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#5
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Senior Member
Join Date: Jul 2008
Posts: 186
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Re: More questions for my HER2 sistas
couple quick follow ups:
"Genentech plans to open an Expanded Access Program (EAP) in the United States to provide, under certain circumstances, people with HER2-positive mBC access to trastuzumab emtansine while the company seeks regulatory approval."
http://www.gene.com/gene/news/press-...etail&id=14147
"Based on these updated overall survival results, people in the lapatinib and Xeloda arm of EMILIA will be offered the option to receive trastuzumab emtansine"
http://www.roche.com/media/media_rel...2012-08-27.htm |
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08-27-2012, 01:49 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: More questions for my HER2 sistas
It is nerve wracking. For me, it was out of the blue - I started having stomach issues and after about a month of tests and stuff, they discovered my liver was chock full of tumors. Oddly, the stomach "symptoms" had gone away on their own by then - I firmly believe it was a warning call for me to get to the doctor.
In my case, nobody expected it and in fact they were in denial that it was the bc. Note, that was way before early stage herceptin and I had no systemic or radiation therapy.
So you can't always tell. And there are not always symptoms early on. I think the best idea is to get screening ct or pet and brain MRI, then if you have persistent symptoms that last more than a couple of weeks, check it out. Because brain mets are often asymptomatic at first, see if you can get regular screening scans, like every couple years, but many doctors don't like to do these without symptoms. The significance of getting the brain MRI is that herceptin does not cross the blood brain barrier so is not protective there.
I think tho, I would reframe your point about headache being a good sign of brain mets, etc. many of the things you describe could he caused by myriad reasons that have nothing to do with cancer.
That's just my nonβ professional thoughts! The main things you have a medical team you feel,comfortable with.
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
Last edited by chrisy; 08-27-2012 at 01:53 PM..
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