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08-04-2006, 03:54 PM
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#1
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Senior Member
Join Date: Dec 2005
Posts: 98
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Please Put A Message!
I just found out that the tumor in my skull is growing. I had an MRI this morning. I had gamma knife 4 weeks ago. I guess it didn't work. I don't know what's going to happen to me or how long I have but I'm alone and scared. Jan (HavahJ)
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08-04-2006, 03:57 PM
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#2
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Jan,
You are not alone in being scared. I too am scared and basically alone. I'm sure there are other women on this board who are also afraid - not being sure what the future holds. Have you been or are you on Herceptin? You may also want to try to get into the trail of Tylkerb.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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08-04-2006, 04:14 PM
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#3
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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Jan,
4 weeks is much too short a time for the gamma knife to be effective. It usually takes at least 3 months. Your rad onc should have told you.
Hang in there and try and be patient.
Regards
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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08-04-2006, 04:23 PM
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#4
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Jan, Christine just posted her story today at the top of this board. Please read it if you haven't already. She had brain tumors and I think you will find her story very encouraing and helpful. I think her post was titled "My Birthday message". Seriously...go read it. Its absolutely amazing and I think it will give you alot of hope.
And I do know what you mean about feeling alone...I feel like that too many times. But we are all here for you and anyone that can help...will help. Hang in there.
Sending your warm & healing thoughts.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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08-04-2006, 05:15 PM
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#5
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Jan-
I wish I was there to give you a big hug. You are not alone. We are all in this predicament together. We are here for you.
Love and Prayers,
Lexi
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08-04-2006, 07:51 PM
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#6
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Jan
We are all here for you...in good times and not so good...keep positive...it may be to early like Joe said. Sending good thoughts and a big hug your way.
__________________
"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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08-04-2006, 09:47 PM
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#7
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Jan, we've all felt the way you do now, it's very hard being out on a limb while you wait to see if a treatment has worked. But as the others have said, and especially Joe who's wife is Christine, the founder of this site and a survivor of brain mets, hang in there. I remember some of the others who've had Gamma Knife relating how the tumors would seem to "grow" for a while after the treatment, but this can be due to necrosis; the tumor is actually dying. Hope this is the case with you, try to be patient until you can discuss this with your radiation oncologist....Meanwhile, you're in my thoughts and prayers, don't despair. We're here.
<3 Lolly
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08-04-2006, 10:11 PM
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#8
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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This is a lonely club that we belong to but we are not alone. If we could just all get together and give each other a big hug. I'll be praying for you..sherryg683
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08-05-2006, 02:15 AM
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#9
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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Jan...
We're here for you. I TOO wish I could give you a big hug. I just said a prayer for you.
Rhonda
__________________
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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08-05-2006, 09:23 AM
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#10
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Deceased
Join Date: Mar 2006
Location: Virginia
Posts: 113
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Sending you warm thoughts, well wishes and lots of prayers
Jan,
I am so sorry for the worry and fear you are going through right now. I know all of us have experienced those feelings during our personal battles with this disease. Please don't think for a second that you are alone, we are all here for you in any way that we can be.
Please be sure to read Joe's post and others who have gone through the scare of brain mets. As difficult as it is to do at times it is important to try to stay as positive as you can as our mental and emotional well being plays a big role in our physical well being. Don't ever give up the hope.
If you haven't already I would really try pushing your doctors to get you on Tykerb as it has shown to cross the brain blood barrior.
I am sending you lots of warm thoughts, well wishes and prayers.
Hang in there Honey, we are all rooting for you.
Love & Hugs,
Nicola
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08-05-2006, 09:56 AM
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#11
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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Hang in there Jan
Please do not give in to this. I know the anxiety all this worrying can cause you and at a time where we should not have anxiety in our lives.
We are all here for you if ever you need to vent & express your fears and fustrations. That is the beauty of this board. WE ALL TRULY KNOW WHERE YOU ARE COMING FROM.
Like Joe mentioned, try to stay calm (I know that is easier said then done) and give it some time. Dig deep to find that peaceful place in your soul, this very helpful for the healing. I find myself having to dig down deep in there now and again but it does help.
Keep the faith Jan and hang in there girl. We are here for you.
__________________
Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial
"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."
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08-05-2006, 10:55 AM
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#12
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Dear Jan,
Certainly on this site, you are not alone and Christine's story will give you hope. You're in a kind of shock right now but reading other people's postings, it seems that this is more usual and is not necessarily the cancer growing but may be actually dying.
Also talk to them about Tykerb/Lapitinib (spelling?)
A big cyber hug and I hope you have a good support team near you but you have a lot of people here pulling for you.
Keep fighting and believing,
sarah
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08-07-2006, 05:18 AM
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#13
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Senior Member
Join Date: Sep 2005
Location: Philadelphia
Posts: 301
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Jan-
I am sending warm wishes your way, and hope you get some comforting news. I am constantly amazed at the kindness of those on this site, but also the knowledge we can share - e.g. Joe's post - I hope you speak to your onc soon about your concerns...
Shell
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08-07-2006, 10:56 AM
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#14
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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I hope you will do someting you really enjoy today, even if it's small. Like me...I just bought three trashy tabloid newspapers. Delicious. We are all scared and hopeful and worried and determined ... along with you. XXOOOXX MJO
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08-08-2006, 06:37 PM
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#15
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Senior Member
Join Date: Jul 2006
Posts: 869
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I am new here, but I am with you too-try not to despair just yet-I am sure there are things that can be done. love, Ceesun
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08-08-2006, 07:06 PM
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#16
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Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
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Dear Jan,
Getting the diagnosis is awful, but then feeling alone is even worst. I am so glad you felt the urge to post; because, as you can see, you have many sisters on this site who are here for a hug or a good cry.
It seems like the fear tags along with a lack of knowledge. Follow your girl friends advice, do a search on this site for brain mets and read as much as you can absorb. Once you are armed with knowledge, the fear starts to melt. You have only got this tiger by the tail, you need to hop on and ride it out with as much knowledge as you can absorb.
Stay with us Jan, rest in the arms of our prayers (and we do pray for each other) and keep us posted on how you are doing.
Love Kim from CT
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