HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Today's Posts

Reply
 
Thread Tools Display Modes
Old 06-15-2009, 11:17 AM   #1
Andrea Barnett Budin
Senior Member
 
Andrea Barnett Budin's Avatar
 
Join Date: Oct 2005
Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW...
Posts: 1,904
Faith and doubt, hope and uncertainty

Dearest Marie,

I have been speechless, yet I feel you know I often think of you and Ed and send out loving prayers in your names. I send hugs as well. But I feel I have little to add to the wisdom offered you on these pages. I simply have been sitting beside you in silence, which is at certain times the best that friends do. Hold your hand. Feel your hopes, fears and concerns. Suffer with you and support you. I am here nodding my head in understanding and profound compassion.

It appears to me that you have been given a number of solid avenues to consider from our Sisters. A lot of them scary and unconventional, but sometimes that is where we must go anyway.

I know you know, we here are all uniquely like-minded peers who nourish and fortify one another because we truly care. We help each other endure the pain, heal our wounds and continue to say YES to Life.

I would add this -- IMHO, to be realistic is to limit yourself. Let go of the judgments of others (docs included, standard medical opinions included) and believe in your ability to make your destiny become the truth you will live with.

I just read that FAITH and DOUBT are both needed to take us around the unknown curves. It resonated with me! When nothing is sure, everything is possible. So, Marie, retain the courage of your doubts as well as your convictions. Honor your doubts, and move forward anyway.

Hold fast your dreams. Without them, Life is a broken-winged bird that cannot fly some bright person wrote. Believe in your dreams. They come from your Soul and are being written at this very moment in the Book of Life. Dreams can open hidden doors.

We are all with you, Marie. Keep putting one foot in front of the other. One step at a time. One hour at a time. One day at a time. Breathe. And hug your husband for me, please...
Andi
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
Andrea Barnett Budin is offline   Reply With Quote
Old 06-15-2009, 07:16 PM   #2
alicem
Senior Member
 
alicem's Avatar
 
Join Date: Jan 2009
Location: Colorado Springs, CO
Posts: 430
)(*&!*&^!$&^%!^%$@!*(&$@(*&%!@*&$^@$(&!@)*&^

Marie, I am just numb right now. I realize that GammaMan must have called shortly after we chatted last Thursday. That evening a friend gave me a combined birthday/end of chemo party. Then we left on Friday for Missouri to attend a wedding and did not get in until late last night. I'm just now checking in on my Her2 family.

I am also speechless, unless you consider profanity a form of speaking. This !(&*(&$^&^!%@(*&@(@#@#) DISEASE! I am encouraged by all of the ideas that everyone is proposing. I love all of the love and thoughts of hope that is coming your way. My love and prayers are added in along with everyone else.

I cannot walk in your shoes, but I can certainly send prayers your way that God will be there to carry you and lighten your load.

I am thinking about you always my dear friend.

Love, 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
alicem is offline   Reply With Quote
Old 06-15-2009, 09:12 PM   #3
chrisy
Senior Member
 
chrisy's Avatar
 
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Alice and Andi

You are both so eloquent...

Thank you
__________________
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
chrisy is offline   Reply With Quote
Old 06-23-2009, 04:35 PM   #4
Lida
Senior Member
 
Join Date: Oct 2007
Posts: 57
Marie,
I understand the tough challenges for you and Ed with those brain mets. Sometimes a list geared towards brain tumors could help. (But don't leave our list!!) In case you have not checked, a large one I know of called BRAINTMR, has the following email address to send posts to BRAINTMR@mit.edu and for info or assistance, see
http://www.braintrust.org/braintmr.htm
or contact mailto:braintmr-request@mit.edu
They may know of other lists too. Warmest wishes, Lida
Lida is offline   Reply With Quote
Old 06-23-2009, 07:33 PM   #5
ammebarb
Senior Member
 
Join Date: Mar 2009
Posts: 508
Thoughts and prayers...

are with you both always.

Barb A.
ammebarb is offline   Reply With Quote
Old 06-24-2009, 12:33 AM   #6
Believe51
Senior Member
 
Believe51's Avatar
 
Join Date: Jun 2007
Location: RHODE ISLAND (Ed getting me a latte on 2nd Cancerversary Cruise 2008) 'BELIEVE': To accept as true or real, To have faith in, To presume ALWAYS BELIEVE
Posts: 2,999
Thanks Ladies for the added 'ummph' I need for today. Our list contains breast cancer brain mets and brain tumor information. It has medications used for brain mets for other cancers, medicines for other problems. It is conventional and reaching for the stars.

We will grab at many straws today and we are going to pick the biggest ones. We are coming back here and probally with an option that will pave the way for others. I mean it when I say we are doing this as much to save his life as to save others we love.

So friends, here is to reaching for the stars, for swimming against the waves, for drawing at straws. Some of the finest miracles happen when we hold on tight to faith, hope and love. I am praying for our miracle, for his as well as yours. Here we go into the uncharted waters.

And NootiesMom, I am touched at your offer. I will p.m. you with my phone number. I would love to talk with you while I am in town and let you know the score. Thank you for following our journey and for replying to this post, I appreciate it so.>>Believe51
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!

Last edited by Believe51; 06-24-2009 at 01:14 AM.. Reason: too late for any normal human to be awake!
Believe51 is offline   Reply With Quote
Old 06-24-2009, 01:06 AM   #7
Kavy
Senior Member
 
Join Date: May 2006
Posts: 157
Marie,
I am so sorry to know about Ed's brain mets. I pray that you find the right treatment for him soon and that Ixempra crosses the blood brain barrier. I'm also praying for your miracle, I know you will get it. I believe in miracles too.
Hang in there. Have faith.
God bless you both.
A big hug,
KarlaV.
Kavy is offline   Reply With Quote
Old 06-24-2009, 01:13 AM   #8
Believe51
Senior Member
 
Believe51's Avatar
 
Join Date: Jun 2007
Location: RHODE ISLAND (Ed getting me a latte on 2nd Cancerversary Cruise 2008) 'BELIEVE': To accept as true or real, To have faith in, To presume ALWAYS BELIEVE
Posts: 2,999
Kavy, a close relative to Ixempra does cross the blood/brain barrier. These drugs are in a new class of chemotherapy medications. I pray for us all that this is the case here also.

Cannot wait to hear our options today and to celebrate with the hope I bring home for us all. There is no better place to share our miracles than right here. Guess you will talk to us at the celebration!>>Believe51
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
Believe51 is offline   Reply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 03:04 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter