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Old 08-12-2012, 06:11 PM   #21
ElaineM
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Wink Re: Gammaknife Managed....check!

I hope you are having a nice restful weekend.
Take care.
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Peace,
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12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
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14 Year Survivor
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"You never know how strong you are until being strong is the only choice you have." author unknown
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Old 08-12-2012, 06:49 PM   #22
7andcounting
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Re: Gammaknife Managed....check!

Denise, So happy for you that you have a Dr. that gets right onto things. Seems it wasn't all that long ago that you posted you had brain mets, and then here you are getting them treated. Way to go. Your picture inspires. Thanks for showing us that you can hit a bump, but then be right back into battle beating the snot out of cancer. Hope/pray your procedure was successful!
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Old 08-12-2012, 07:20 PM   #23
StephN
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Re: Gammaknife Managed....check!

When I had gamma knife the screws went in at each side of my forehead about an inch below my hairline in front. Of course the back two are placed in the solid bony area behind the top of the ears.

The person who numbed my scalp was a woman neurosurgery resident. She was very adept with the needle and hitting the right spot. The back areas of my scalp were numb for quite a while - maybe a couple of months to fully wear off.

I did not feel the screws, only the needle when she began the numbing - sort of like when the dentist is starting to numb your mouth.

My front places where the screws went left me with little scabs less than 1/4" in diameter. They barely bled when the headframe was removed.

For cyberknife you must have a mesh "mask" made that will fit extremely tightly over your face and bolt to the table so that there is NO movement.

The Gamma Knife is accurate to 1mm of the target area, so they can't have the patient able to move the head at all.

Just a few details from a patient's viewpoint.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 08-13-2012, 07:18 AM   #24
Deb33
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Re: Gammaknife Managed....check!

BTW - your hair looks adorable.
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11/19/10 Identified swollen lymph node
1/24/11 Mammogram showed microcalcifications - no mass
2/4/11 Diagnosed ER/PR- HER2+++
2/23/11 Began TCH protocol every 21 days 6x
5/23/11 Ultrasound of originally diseased lymph node shows normal
7/25/11 Lymph node dissection - 8 of 14 show disease
7/29/11 Double mastectomy with reconstruction (expanders)
8/29/11 Begin follow up chemo - Adriamycin 4 treatments every 2 weeks and Xeloda. Self inject Nupogen shots
1/6/12 6 weeks of Radiation finished
2/13/12 Last Herceptin/remove port
3/27/12 PET/Brain Scan NED :)
8/15/12 Final reconstruction - hello nipples, good bye expanders
9/14/12 Rejected implant/infection. Implant removed
5/6/13 Latissumis Dorsi surgery left side with expander

PS - my photo was taken 5 days after my double mastectomy surgery and 6 weeks after my TCH was completed
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Old 08-13-2012, 03:29 PM   #25
Jackie07
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Re: Gammaknife Managed....check!

Your picture reminded me of the girl 'Valarie' in the movie 'Pure luck'...
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Old 08-13-2012, 03:33 PM   #26
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Re: Gammaknife Managed....check!

Denise,

I hope you're feeling better now. I'm so glad you were treated promptly. Brain mets fully resolved.....check!

I love your wit, spunk, and drive. God bless you.
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4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 08-13-2012, 03:34 PM   #27
lkc Gumby
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Re: Gammaknife Managed....check!

Many many blessings to you Denise!
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Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
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Old 08-13-2012, 08:04 PM   #28
Lani
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Re: Gammaknife Managed....check!

Steph thanks for the post of your personal experience.

Your descriptions should help others be realistic rather than imagining the worst

in trying to find the description of the screw/screw placement I googled
several patient's perceptions of what they had been through and they were quite "imaginative" it seemed. ie, that the screw went through the skull rather than into it.

In any case, there is no substitution for personal experience..Steph you have been there and done that and sharing your experience in a way others can quickly access it on this site is priceless.

Perhaps a thread should be started regarding: please describe your personal perceptions and experiences of the following procedures:

first dose of herceptin
first few doses of anthracycline
first few doses of taxane
first few doses of bisphosphonate
first few doses of navelbine
first few doss of vinorelbine, and other drugs commonly given
radiation therapy whole breast...describe how felt initially, two weeks into it, fourweeks into it, at the end, one month later

APBI upon iniiation, during it , at the end of it and one month later

SRS brain mets ditto

WBR brain mets ditto

embolization/spheres for liver mets

SRS of mets other than brain (Esther had liver I think)

lumbar puncture

IT herceptin

Then those facing these procedures could have instant information

Those with nursing backgrounds, eg Alaka Angel etc could state that --their descriptions might be less "imaginative" as they may have more background
knowledge about the whats and where fors

Fear of the unknown and loss of control seem to be the common theme
and posting a webpage with a medical description of the procedure, what to look out for, why and how it is done (usually on nih, nci website) would be well supplemented by personal experiences


Many of you have beem thrpigh so much

Making it easy for those who anxious about what is upcoming sould be leaving a valuable legacy


Thanks again, Steph

oops I forgot to list bone marrow aspiration
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Old 08-13-2012, 08:52 PM   #29
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Re: Gammaknife Managed....check!

Yikes!
I certainly hope I didn't scare anyone with my description! The video link Jackie posted on the other thread shows exactly what to expect. It's the same one they showed me when they scheduled the procedure. And it's not scary at all!! Certainly not as scary as the phone call where the oncologist announces that you HAVE lesions on your brain. That, my friends is the scariest thing I've ever heard in my life.

Frankly, I'm hoping this procedure saved my life...so what's a little discomfort for a few hours. The whole thing was easier than chemo (even Herceptin), and radiation! And...I don't have brain mets anymore!

Sorry if my description sounded scary...blame it on the drugs...or the swelling I guess. I was shooting for humor...and trying to put people at ease...guess that didn't come off so well.

Trust me when I say...it was virtually discomfort free...and 100% worth it.
Denise
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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
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Old 08-13-2012, 09:01 PM   #30
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Re: Gammaknife Managed....check!

I am looking forward to an "all clear" report Denise!!

all the best
caya
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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

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Old 08-14-2012, 11:12 AM   #31
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Re: Gammaknife Managed....check!

Denise;

Rest, relax and recover!! I too am looking forward to hearing an all clear from you. All the very best and many thanks to you and Steph for sharing your experiences.

Cathy
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Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
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Old 08-14-2012, 03:41 PM   #32
StephN
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Re: Gammaknife Managed....check!

Denise -
Your photo is quite reassuring, since you say you have just had the headframe removed. You are NOT doubled over in pain and do not have blood gushing down your face. And the smile looks genuine.

LANI - glad you appreciate my experience. Hope others will see it.

The thing that goes on our head is called a HEAD FRAME - this is what is then attached to the HELMET that is already in place on the table in the machine.

The HELMET is like a big bowl with little holes in it where the beams come through to the area of treatment.

The head frame is VERY light weight (titanium, I think?), just a little awkward for trying to eat something (best to drink a shake through a straw), or lie back while waiting to go in the Gamma Knife machine. Being so light weight also means that the screws do not have to go on very tightly. Just enough to keep the frame in place while you wait and to attach in the helmet.

The pressure of the screws is a delicate procedure as the technicians would not want to cause a hairline fracture by too many turns of the screwdriver.

I did not have a headache and was out merrily driving around the next day.

Like Denise said - it is hearing the news that our brain has been invaded by the cancer which is the worst part. Next is the consults to see what are the possible treatments, and last nerve wracking is the MRI after the head frame is on and they are planning the treatment. That MRI will show if there are any new spots to treat. A big sigh of relief when they told me there was nothing new.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 08-14-2012, 04:24 PM   #33
StephN
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Re: Gammaknife Managed....check!

More on the HEAD FRAME:

This is exactly how mine looked:



I had posted a pic of me with mine on, but the post is still here and photo is not.

Just where the "pins" attach to the forehead is easy to see, and there are two more in the back. The stabilizers on the side do not have pins/screws. This is connected to the helmet, and the machine will make any positional adjustments itself. The patient is unable to move his head or neck on his own once in the machine.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 08-14-2012, 06:41 PM   #34
Mtngrl
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Re: Gammaknife Managed....check!

I appreciate getting this information.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 08-15-2012, 06:45 AM   #35
schoolteacher
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Re: Gammaknife Managed....check!

Glad this is over for you, Denise.

Amelia
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Old 08-16-2012, 09:21 AM   #36
JillaryJill
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Re: Gammaknife Managed....check!

Denise,
You continue to amaze me. I am sure your students just adore you. Your full of personality and you effect many people in such a positive way. Your special!
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DX November 2010
Brain MRI, CT of lung, liver, bone, all clear
Double Mastectomy w/expanders December 1, 2010
ER- PR- Her2+++, grade 3, 12 positive nodes out of 15
Stage IIIc
Started TCH/Chemo December 31, 2010
6 rounds TCH
Herceptin every 3 weeks for a year
33 rounds of TomoTube radiation, to chest wall, neck, skin and lymph area
September, 2011, MRI to lower spine, hips, DX bulging disk, L4 & L5, pain not from cancer
Expanders removed, implants in Dec 1, 2011
Finished Herceptin, December 21, 2011
August 2012, CT of chest and abdomen, all ok
Enrolled in MC1136 Phase I Peptide Vaccine Trial at Mayo Clinic, Rochester, Minnesota
March 2013, First Vaccine
April 2013, 2nd Vaccine
May 2013, 3rd Vaccine
June 2013, 4th Vaccine
July 2013, 5th Vaccine
August 2013, 6th Vaccine Done!
September 2013, Mayo visit, Echo results 68, vaccine did not effect my heart! Blood work normal.
January 31, 2013, Mayo visit, Echo normal
February 23, 2014, Numb lips on right side, Brain MRI, normal!
June, 2015, Finished the trial at Mayo Clinic. Feels good!
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Old 08-16-2012, 03:06 PM   #37
Lani
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Re: Gammaknife Managed....check!

Steph--thanks so much for your detailed descriptions of your experience

I do think it would be good to have a section on different procedures--
MRI
CT
Gamma Knife
Cyberknife
lumbar puncture
bone marrow aspirate
first few infusions of different chemos

so people have an idea of what they are in for (their imagination of what it might be like is probably worse than the reality)

If it all in one place, people will not have to use the search engine (which it seems people hate to do) and others with different experiences can easily chime in and add to the ongoing list of experiences

Anyone else think this might be useful?

Again, each thread could start with the website info on nih/nci about the procedure

Thanks again Steph
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Old 08-16-2012, 05:23 PM   #38
Debbie L.
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Re: Gammaknife Managed....check!

I'm glad to hear you're past this hurdle, Denise.

I think Lani's idea is a great one. Would it be hard to set up a new forum just for treatment details? Someone would have to put together a thread for each procedure, with an intro message of the basic information. People do like to see the official information (NCI/NIH as Lani suggested) but then it always seems we are MORE interested in hearing personal experiences. We could help gather the opening info, if there's someone who could set up the forum.

As long as we have a good variety of experience, the stories from those who had harder times will be balanced out by those who sailed thru, so I don't think it would alarm people. As Lani said, for most of us our imagined version is worse than the reality turns out to be.

Plus, readers will see that the reason the "official" information sometimes seems so vague as to be no information at all is because each person reacts or responds differently -- so it's hard to say what the experience will be like for any one person.

In addition to describing the procedure and the personal experience of same, people could add helpful hints -- things that made it easier or helped with side effects (or didn't help), etc. And for the things that are hard to visualize (head frames and helmets!), photos are great.

Debbie Laxague
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Old 08-16-2012, 09:26 PM   #39
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Re: Gammaknife Managed....check!

Denise, I'm so glad it all went well for you and you are doing fine. Have you been back to teach since this last bump in the road? If so I'm so glad you are keeping all of your eggs in a row.

Gods blessings Lil Girlfriend. I always keep you in my prayers.
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 08-17-2012, 10:33 AM   #40
Sheila
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Re: Gammaknife Managed....check!

Denise...you not only amaze me but inspire me more than you will ever know! You photo looks like you just came back from a brisk walk in the park....

may you heal quickly and feel better each day...you are an inspiration of courage and strength to each and every one of us.
__________________
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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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