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Old 01-18-2012, 07:26 PM   #1
jml
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8 weeks, 8 new spots in Brain = 15 rounds WBR

Just got home from my follow up Brain MRI and meeting with Rad Onc.
My last Brain MRI was on 11/18/11 - at that time we
were discussing a 2mm spot close to the area in my L lobe where there was a 4 mm spot that was successfully treated with Novalis'd in 6/10.
At that time, we decided to watch & wait the re-scan in 8 weeks.
That brings us to today.
Today we find 8 new spots - a 2cm spot in my brain stem, a 2cm spot in my R temporal lobe, and other very tiny spots.
Now we're talking about 15 rounds of WBR.
I have the planning session on Friday.
Incidentally, I may have to stop the metronomic Cytoxan/Methotrexate for the 3 weeks of WBR.
The Rad Onc suggests that I not wait to start the WBR, but in the mean time, in the absense of systemic chemo, what happens to the disease in my body?
It's too much.I'm exhausted from crying and not even sure why I should go ahead with this treatment, other than I'm too afraid to stop.

Trying to keep the faith~

jml

Dx-5/17/02 - 33 yo; Stage IV
L IDC w/single liver met
1) Herceptin + Navelbine x 8 weeks - No response; progress to innumerable,immeasureable liver mets
2) ISIS 2504 + Herceptin - 6 mos, partial response
3) Taxol + Herceptin x 13 weeks to NED!
NED for 1 year
9/04 - Single liver lesion recurrence
Taxol + Herceptin - on/off to beat back lesion
12/05 - R Hepatectomy; Liver NED until 2009
3/06- Local recurrence - Left breast, IDC & DCIS, but holding treatment while continue to heal from Hepatectomy.
12/06 - L mastectomy + reconstruction through 8/07
10/07 - Recurrence - supraclav nodes
4) Gemzar + Herceptin - on/off controlling nodes thru
9/08 - 7wks Rads to supraclav nodes
10/08 - Acute Renal Failure - nodes in belly stricturing kidneys. placed permanent ureteral stents
Back on Gemzar + Herceptin, but no longer responding.
5) 05/09 - Tykerb + Xeloda - partial response x 5 mos
6) 10/09 - Xeloda + Herceptin - no response, disease progresses
7) 2/10- Ixempra + Herceptin - partial response x 12 wks.
Discovered single brain lesion x 4mm & liver lesions growing while screening for TDM1 + PI3Kinase study.
6/10 - Novalis to treat brain met - SUCCESSFUL!
8) 6/10 - Chemo-embo w/Adriamyacin to de-bulk liver lesion.
9) 8/10 - Screened & Started TDM1 EAP
Immediate response, disease in belly responds dramatically.
2/11- questionable progression of lung nodules
Discontinue TDM1
10) 3/11 - PI3Kinase + Herceptin - intial good response in 1st 6 weeks but LFT's elevated.
11) 7/11-Discontinue PI3Kinase + Herceptin study;
Disease progression - 2 small lesions in colon – docs have never seen this before in BC
11) 8/11 –Start new combo Halaven+Herceptin
10/14/11 -Completed 3 cycles (9 wks)Halaven+Herceptin...
10/18/11 - Scanxiety time -1st scans since starting this regimen
Good interval response, continue on H+H!
10/25/11 – new 2mm questionable spot in brain? Due to Novalis or new disease?
Re-scan in 8 weeks.
1/3/12- Disease progression; 50%increase size & SUV-R lung, middle lobe 6cm lesion.
R supraclav node multiple, miscellaneous nodes in belly. Colon lesions fired up.
12)Herceptin+ metronomic Cytoxan + Methotrexate.
…on a hope & a prayer. Only chemo I haven’t been on is Taxotere.
Hurry up Pertuzumab & TDM1!
Follow Up Brain Scan on 1/18/12…pleasepleaseplease be okay. I can’t take much more.
1/18/2012- 8 new spots in 8 weeks since last Brain MRI
one 2cm spot in brain stem, one 2cm spot in R temporal lobe.
No symptoms.
Suggested tx – WBR x 15 rounds

Last edited by jml; 01-18-2012 at 07:40 PM.. Reason: incomplete
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Old 01-18-2012, 07:46 PM   #2
StephN
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Re: 8 weeks, 8 new spots in Brain = 15 rounds WBR

Oh my, dear Jessica -

You have done so well in keeping your brain trouble free all these years!

You know I feel for you and understand all the emotions. It puts a lot of doubt into a person once our brains are attacked, but there is much that can be done.
It is not in your nature to give in - but you are allowed some time to process what is next. We all need that when facing more mets.

Too much going on to hit the spots, so I understand why WBR. Will they treat the 2 larger places singly afterwards? Or not that far down the road yet.

Best thoughts for the brave person we all know and love to take this like the champ you are. {{{{HUGS}}}}
__________________
"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 01-18-2012, 08:00 PM   #3
Paty
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Re: 8 weeks, 8 new spots in Brain = 15 rounds WBR

Jessica,

I am so sorry to hear what you are going through. I do not know what to say but, I will be praying for you. I send you a hug my dear and hope we can soon have different news.
__________________
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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Old 01-18-2012, 08:24 PM   #4
JennyB
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Re: 8 weeks, 8 new spots in Brain = 15 rounds WBR

Jessica,

I hope you get some improvement soon I will be praying for you.

Jenny xx
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Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy

Praying the Herceptin is as good as its hype!!
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Old 01-18-2012, 08:42 PM   #5
ElaineM
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Wink Re: 8 weeks, 8 new spots in Brain = 15 rounds WBR

I am so sorry. Hugs !!!!!!!
I think would ask my oncologist if I could at least continue the Herceptin even if needed to take a break from the other drugs during the radiation if I were in your situation. Perhaps the radiation oncologist and the medical oncologist could work together to figure out something together to help you cover the rest of your body during the radiation.
Take good care of yourself, keep putting one foot in front of the other and try to stay positive.
I have my fingers crossed for your success.
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Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
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Old 01-18-2012, 08:55 PM   #6
sassy
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Re: 8 weeks, 8 new spots in Brain = 15 rounds WBR

Jessica,

I wish I could reach through here and hug you hard. I'm so sorry you are having to deal with this---but I know you will deal! One step at a time like you have always done. Cry, Rant and Rave and then step up for battle.

Got you in my heart.
__________________
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.......
14YEARS NED!
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Old 01-18-2012, 09:11 PM   #7
chrisy
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Re: 8 weeks, 8 new spots in Brain = 15 rounds WBR

Jessica, certainly not the news you were hoping for - I know you must be feeling discouraged and scared. And as you say, trying to keep the faith. You are a strong woman.

I agree, if you can stay on herceptin (or maybe herceptin/tykerb?) that may offer some protection vs a total chemo break.

In the meantime, know that we are keeping faith FOR you and that you are wrapped in loving prayers.

Chris
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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
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Old 01-18-2012, 09:15 PM   #8
alicem
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Re: 8 weeks, 8 new spots in Brain = 15 rounds WBR

Jessica,

Agree with all that is written above. As usual, wise advice from wonderful ladies. I'm sending you . . .

{{{{{HUGS}}}}}

from Deep in the HEART of Texas.

~Alice
__________________
9/15/08 (age 52) - Mammo: calcifications
9/22/08 - Biopsy: DCIS, grade 3. ER,PR status: Pos. in 75-90% of tumor cells.
10/01/08 - Ob/Gyn appt.: found complex, mostly cystic mass on right ovary - 11cmx12cmx 8cm
10/15/08 - Hysterectomy & Oophorectomy, Lumpectomy: Cyst on uterus, not ovary - all was benign. Breast - 5 of 6 bad margins. 2 Sentinel Lymph nodes removed, both negative. Stage 0, Tis, N0
12/11/08 - Mastectomy & DIEP reconstruction: Surprise! 2 cm Invasive DC, grade 2 found. One benign internal mammary lymph node. Stage 1, T1c, N0, all clean margins. ER+ (Proportion Score = 2/5, Intensity Score = 2/3) and PR+(Proportion Score = 3/5, Intensity Score = 2/3)
HER2 score = 3+
1/09/09 - Oncotype DX: Recurrence S/core of 60 !?!?! ER status is NEG!! PR staus is NEG! HER2 score = 12.2 (still positive, greater than 11.5 is positive).
1/20/09 - Started chemo: TCH
5/26/09 - FINISHED CHEMO!
1/05/10 - FINISHED HERCEPTIN!
1/22/10 - Port-a-catheter removed!
3/07/18 - Still NED
9/10/23 - Still NED
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Old 01-18-2012, 09:36 PM   #9
mmoons
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Re: 8 weeks, 8 new spots in Brain = 15 rounds WBR

Jessica-

You are so strong and so brave! Getting that news is crushing. It is too much. I am sure you are exhausted. But please keep your eye on the prize....NED again. You will get there, Jessica. You will. This desease is no match for your stamina and your will and your courage.

Like everyone else here, if I could send a hug through these words I would...I am. Please feel all the loving, healing, supporting thoughts and prayers coming your way.

Maureen
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Maureen


My loves

IDC & DCIS, HER2+++ Diagnosis: October 1, 2008
  • Tumor: 6.8 centimeters, never showed on mammograms
  • ER-/PR-
  • November 2008: Sentinal Lymph node surgery. 6 out of 9 lymph nodes with cancer
  • Stage IIIc
  • Lapatinib Clinical Trial start: November, 2008
  • Surgery: May 5, 2009
  • Started Herceptin: May 19, 2009
  • Started Radiation (33 rounds): June 10, 2009
  • September 2009: Moved to Michigan to be closer to family
  • 12/09 - still on Herceptin until May 2010
  • August 2010: Port out, port out, port out port out port port port out port ooooout...da da da dant! (to the music of the Pink Panther)
Blog: http://moonsfamily.blogspot.com
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Old 01-18-2012, 10:56 PM   #10
hutchibk
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Re: 8 weeks, 8 new spots in Brain = 15 rounds WBR

Jessica, it's hard for me to add anything that these ladies haven't already suggested! I do like Chrisy's idea of Tykerb/Herceptin, which I think by your signature you haven't tried yet... maybe ask the rads onc and the med onc how slow they are all growing... and if you are to scan monthly while on it, maybe it would make the punctates (smallest of spots) go away as the Tykerb/Xeloda did me. (I got 18 months from Ty/Xel and another 20 months from Ty/Herc. It's different for everyone, I know, but it's a great thought.)

It sent my punctates away completely and allowed me to do the 'whack a mole' method of targeted radiation to the remaining 6 small lesions.

Just food for thought. Blessings, prayers and love for you as you decide how to move forward.
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 01-18-2012, 11:05 PM   #11
Rich66
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Re: 8 weeks, 8 new spots in Brain = 15 rounds WBR

Radiation (enhances CSC?, needs Akt inhibition,w/endocrine,w/honokiol,w/curcumin,w/Zol,w/loratadine,w/glycolysis inhib,w/various chemo, w/cox2 inhib)
http://her2support.org/vbulletin/sho...27?fmetronomic


Brain mets (treatments, diagnostic issues, prevention, mechanisms, blood brain barrier BBB, delivery, intranasal)

http://her2support.org/vbulletin/showthread.php?t=42084
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Old 01-19-2012, 12:42 AM   #12
KsGal
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Re: 8 weeks, 8 new spots in Brain = 15 rounds WBR

((hugs)) Im so sorry that this has happened. I will certainly keep you in my prayers, and send you lots of positive energy.
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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Old 01-19-2012, 06:05 AM   #13
jml
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Re: 8 weeks, 8 new spots in Brain = 15 rounds WBR

Thank you everyone for your support, hugs, love and suggestions.

It was a long 5 hour visit with the doc yesterday, between getting the mri and seeing his resident then seeing him. They didn't even have a dictated report to share with me, as we went directly to the computer to read the films, so I don't have any exact measurements.
I believe the most urgent information here is that only 8 weeks ago the only thing on my brain scan was a 2mm spot in my L lobe that didn't look exactly like disease, because it appered to be more linear than spherical.That was the reason for the watch & wait x 8 weeks.
These results are a horrifiying shock...when he said "8," I sqeezed my eyes shut so tight.
The most problemeatic thing is how quickly these things have grown, most especially a ~2cm lesion in the center of my brain stem. The brain stem - that controls everything - from motor function, to breathing and heart beating.
And a 2cm lesion in my R tempora lob (above the ear).
While I'm completely asymptomatic, they do see some swelling already and am to start decadron very soon.
Incidentally, they can't do any kind of radio-surgery -novalis, etc- in the brain stem, as it creates too much necrosis, and as we've all scene recently with Brenda, that is a very dangerous situation.

I'm sending an email to my Onc. right now. The RadOnc said he would talk/email her last night, so by now she knows. I do want to talk to her about adding Tykerb back in. Back in 2009, the Tykerb didn't do much to control the disease in my body, but maybe it'll help my brain now?
Thankfully my sister is here from San Fran. She was planning on being here this weekend anyway, so the timing couldn't be more perfect.
I'm scared. All I can imagine is that i'll be putting my brain in a "microwave" for 15 days, and what will I be left with? How sick will I feel during/after? What little hair has started to grow back will certainly be lost again.
And whatever time we do buy for me is for what? To continue to live in fear and sometimes pain from this disease?
I keep saying "I just want it to be over," but truly, I'm not sure what I mean by that.
This is so hard.

Jml

Last edited by jml; 01-19-2012 at 06:25 AM.. Reason: typos
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Old 01-19-2012, 09:19 AM   #14
Delaney
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Re: 8 weeks, 8 new spots in Brain = 15 rounds WBR

Jessica,
So sorry to hear your bad news. The worst things I found about the WBR was the hair loss and the fatigue, but i got through it and you will too. Its great your sister is there with you. I really hope the treatment does great things for you.
__________________
Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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Old 01-19-2012, 09:36 AM   #15
Emelie B
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Re: 8 weeks, 8 new spots in Brain = 15 rounds WBR

Hi Jessica,
I too, am so sorry for about your news. I know that punch in the gut when they tell you what it is this time. I totally agree with Steph, Brenda and Delany. Those are great sugesstions and we all know you can do this.
Sending prayers to you and your sister for stength and peace in the coming days.
Emelie
__________________
Nov. 2006-IDC with Her2 +++
A/C for 3 rounds
Dec. 2006- Herceptin and Taxotere
March 2007-MRM with 8 of 14 lymph node involvement
May 2007-36 Rads
Sept. 2007- Stopped Herceptin
Jan. 2010- CT scan shows enlarged lymph nodes in sternum and lung involvement
Feb. 2010-PET scan shows mets to liver, lung, lymph nodes and bone
Feb. 2010- Started Herceptin/Taxol and Zometa
April 2010-PET scan clear. Herceptin and Zometa
June 2010- Stopped Herceptin continue Zometa and still NED
August 2010-Back on Herceptin and Zometa every 3 weeks
August 13, 2010- Had another port placed
August 24, 2010- PET scan clear. Herceptin and Zometa every three weeks
Nov. 2010-PET scan clear
Feb. 2011-Brain MRI clear
March 2011- PET scan clear
May 2011- PET scan clear
Sept. 2011- PET, Mammo, Bone Scan all clear- Herceptin only
March 2012-Recurrence in lungs and tumor around pota hepatis artery. Added Navelbine to herceptin
April 2012- Entered palliative care
June 5, 2012-Entered hospice care
Planning my memorial
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Old 01-19-2012, 09:47 AM   #16
chrisy
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Re: 8 weeks, 8 new spots in Brain = 15 rounds WBR

Dear Jessica,

"I keep saying "I just want it to be over," but truly, I'm not sure what I mean by that.
This is so hard."

That does resonate - you've been in this marathon for SO LONG, longer than most and probably longer than even you imagined. I think you don't need to know what you mean by that, especially in the heat of this moment. That feeling is just your reality right now - and you don't know what tomorrow will bring. I saw such a zest for life in you when we met in San Antonio - and I sense this is the "real" Jessica.

For now try to surrender that doubt and fear, and fatigue. Know that there are many who are there to love and support you - including your outstanding medical team.

with hugs and much much love,
Chris
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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
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Old 01-19-2012, 03:06 PM   #17
karen z
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Re: 8 weeks, 8 new spots in Brain = 15 rounds WBR

Jessica,
Chris's last post says everything I want to say to you but much more eloquently than I can say right now. I don't know how long your sister will be in Atlanta but I am so glad she is with you. Remember that I am nearby so I hope you will let me help in any way I can as you go through treatment. I will be in touch.
Love,
Karen
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Old 01-19-2012, 05:56 PM   #18
Patb
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Location: Louisville KY Naples FL
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Re: 8 weeks, 8 new spots in Brain = 15 rounds WBR

KEEP THE FAITH ...My prayers are with you. You have
been through so much and as I read your post, I know
you will keep trying and my thoughts are with you everyday as you go through now even more.
patb
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patb

Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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Old 01-19-2012, 06:40 PM   #19
adelay
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Location: Mechanicsburg, OH
Posts: 109
Re: 8 weeks, 8 new spots in Brain = 15 rounds WBR

Please know that prayers are heading your way...trust in the Lord, he will help you through this.
__________________
~Anna

DX April 2009 age 40
IDC Triple Positive
7 of 14 nodes positive
Lumpectomy May 2009
Port May 2009
AC done in Sept 2009
T done Dec. 2009
Herceptin (should finish Oct. 2010)
Mastectomy January 2010
Radiaition x 33 done April 2010
Tamoxafin for five years
Herceptin done!
Still clear May 2011
3 years out May 2012, all good!
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Old 01-19-2012, 06:46 PM   #20
bejuce
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Join Date: May 2009
Posts: 510
Re: 8 weeks, 8 new spots in Brain = 15 rounds WBR

Oh Jessica! What more can I say after all these words? You and CourtneyL going through WBR... Two amazing young women with beautiful lives being struck by this breast cancer monster. I don't know what to add to the above. I'm praying and thinking of you and hoping that you'll have the strength to pull this through and come out of this experience with hope.

I'm also angry that this disease chooses to attack us like this. I believe in the research that is being done but I'm mad that things don't move as fast as we'd like. Sometimes I wanna quit my job and go back to school to study biology and try to do some research myself. I feel so powerless.

I can't imagine how hard this must be for you. Hope that at least by being in this group and hearing our words you get some comfort, peace, and courage to keep fighting. We all believe in you.

Love,

Marcia
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ER+ (30%)/PR-/HER-2+, stage 3

Diagnosed on 02/18/09 at 38 with a huge 12x10 cm tumor, after a 6 month delay. Told I was too young and had no risk factors. Found swollen node during breastfeeding.
March-August 09: neo-adjuvant chemo, part of a trial at Stanford (4 DD A/C, 4 Taxotere with daily Tykerb), loading dose of Herceptin
08/12/09 - bye bye boobies (bilateral mastectomy)
08/24/09 - path report shows 100 % success in breast tissue (no cancer there, yay!), 98 % success in lymphatic invasion, and even though 11/13 nodes were still positive, > 95 % of the tumor in them was killed. Hoping for the best!
September-October 09: rads with daily Xeloda
02/25/10 - Cholecystectomy
05/27/10 - Bone scan clear
06/14/10 - CT scan clear, ovarian cyst found
07/27/10 - Done with Herceptin!
02/15/11 - MVA-BN HER-2 vaccine trial
03/15/11 - First CA 15-3: 12.7 and normal, yay!
10/01/11 - Bone scan and CT scan clear, fatty liver found
now on Tamoxifen and Aspirin


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