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Old 06-15-2009, 11:17 AM   #81
Andrea Barnett Budin
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Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW...
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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
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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...
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Old 06-15-2009, 07:16 PM   #82
alicem
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)(*&!*&^!$&^%!^%$@!*(&$@(*&%!@*&$^@$(&!@)*&^

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
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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 06-15-2009, 09:12 PM   #83
chrisy
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Alice and Andi

You are both so eloquent...

Thank you
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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 06-15-2009, 09:17 PM   #84
dchips1
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Intrathecal Herceptin

I have looked into this for myself if the brain mets continue. I had a port dye check and the Interventional Rad dr that did it reccommend someone in Oregon, he trained under him.
Neuwelt, Edward A.: Oregon Health & Science University - Portland, Oregon

http://www.ohsu.edu/health/meet-our-...r.cfm?id=11097

I have also checked into this through my Gamma/neurosurgeon at Barrows in PHX, AZ, he says it is plausible, they do it with injecting mannitol to open the blood brain barrier. I rescan in 1 week, at the last scan the 1 lesion that I have had gammed twice showed little change. And I as well have had WBR. already. So that is why I have looked into taking hercepitn in that way. Dr Barranco (Barrows) says that the risks are stroke, increased ICP pressure. Good Luck to you and I may not post often But I read and pray and cry with all of my Her2 members. Darita
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dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain

1/29/14 HIHO HIHO its off to Neuro surgery I go





Life is Good when you wake up in the morning and take a breath and know that God has given me another day.


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Old 06-16-2009, 12:10 AM   #85
SoCalGal
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Marie and MO - sending fierce warrior woman prayers for peace, for miracles, for blessings and for courage and strength.

It's important to remember that while not everyone can be cured, we can all be healed. The love, friendship and support that surrounds us in life is a big part of that healing. Feeling whole, holy, loved. With love, Flori
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1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 06-22-2009, 08:42 PM   #86
Believe51
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Unhappy

Darita, thinking about you today as I too explore brain options for Ed. Please keep me updated on your continued plan, I know you are about due for those scans.

I have been researching brain options for almost 2 years now. If there is anything I can help you with please let me know. The amounts of new treatment options and open clinical trial information I have makes me hopeful...

..that is until I read,

"Innumerable supratentorial and infratentorial brain metastases are seen. The largest measuring approximately 8mm, are in the middle frontal gyrus and in the left cerebellum. There is minimal edema associated with both. A small number of the metastatic foci demonstrate hemosiderin staining. Ventricles are unchanged in size."

"These is osseous metastatic disease in the left parietal calvarium and in the superior cervical spine-the odontoid marrow appears completely replaced by tumor."

Impression: "Interval progression of metastatic disease with innumerable new supratentorial and infratentorial brain metastases which are all subcentimeter in size. In addition, there is metastatic disease burden to the skull and visualized cervical spine."

This report has forced us to explore options that are not conventional. Here is to swimming against the waves. I am praying that we come home with more hope by being able to stay afloat. Wish us luck Sweetheart, we are going to break the rules.>>Believe51
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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!!
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Old 06-23-2009, 09:29 AM   #87
NootiesMom
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My Heart is so heavy

marie,

I have been following you and Might Oaks story for two years and have prayed for both of you. I have no words to say OTHER THAN I LOVE YOU BOTH AND PRAY FOR GOOD NEWS.

Your journey has been long and hard fought.

Please know that I'm here right in Boston if you need a shoulder!!!!!!!!!!!!!!!!!!!
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Old 06-23-2009, 04:35 PM   #88
Lida
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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
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Old 06-23-2009, 07:33 PM   #89
ammebarb
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Thoughts and prayers...

are with you both always.

Barb A.
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Old 06-24-2009, 12:33 AM   #90
Believe51
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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
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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!
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Old 06-24-2009, 01:06 AM   #91
Kavy
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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.
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Old 06-24-2009, 01:13 AM   #92
Believe51
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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
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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!!
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