 |
|
08-27-2008, 04:51 PM
|
#21
|
|
Senior Member
Join Date: Nov 2007
Location: New Jersey
Posts: 889
|
Marie, sorry to hear you lost your dancing shoes. I have no advice for you, but I can offer you a big cyber (((HUG)))! I hope you and Ed find the help you need. Will keep you in my prayers.
__________________
dx aug 03 invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
|
|
|
|
08-27-2008, 05:19 PM
|
#22
|
|
Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
|
Marie-
I am here for you in LA w/extra bedrooms. My brain surgeon is out of Dr Black's office - I had the gamma at Cedars-Sinai. Cedars is 5 minutes away and UCLA about 15. USC is 20 and CITY OF HOPE 45.
Let me know how I can help. I am already praying.
__________________
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.
|
|
|
|
|
08-27-2008, 05:43 PM
|
#23
|
|
Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
|
Dear Marie,
Sending big hugs to you and Ed. It sounds like there are some great surgeons who will be able to treat the mets. I can't believe the b@#$$%$# had the nerve to come back either! Gamma is gonna get them!
Hugs and Prayers,
Lexi
|
|
|
|
|
08-27-2008, 06:09 PM
|
#24
|
|
Senior Member
Join Date: Dec 2005
Posts: 274
|
Dear Marie & Ed,
Sending hugs, thoughts and extra prayers your way. You will get through this.
Sincerely,
Liz J.
|
|
|
|
|
08-27-2008, 06:35 PM
|
#25
|
|
Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
|
Marie
My thoughts are with you and Ed. Stay strong. We are always here for you.
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
|
|
|
|
|
08-27-2008, 06:57 PM
|
#26
|
|
Senior Member
Join Date: Oct 2005
Posts: 823
|
Marie & Ed I am so very sorry to hear this new's. Please know that many prayers are coming your way.
__________________
Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
|
|
|
|
|
08-27-2008, 07:03 PM
|
#27
|
|
Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
|
So. so sorry but there are things to do as so well
explained in the post by Brenda, Joe, etc.. Please
know we care and you and Ed are in our heart of
hearts and prayers are headed your way. Take
care and know we are here for you.
patb
__________________
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.
|
|
|
|
|
08-27-2008, 07:12 PM
|
#28
|
|
Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
|
Hi Marie and Ed,
I just popped in to see if anything is new and I came upon your post Marie. Ohhhhh, Marie and Ed.....what can I say that hasn't already been said. I'm sorry seems so trite and empty BUT I really am. However, reading the posts from those who know something about brain mets I feel encouraged for you both.
Sending prayers for peace and wisdom.
Love to you both,
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
|
|
|
|
|
08-27-2008, 07:19 PM
|
#29
|
|
Senior Member
Join Date: Oct 2007
Posts: 1,851
|
Marie, There are survivors here dealing with brain mets and they're very knowledgable about how to control them. You and Ed are in my prayers, and you will get to the right person who will treat Ed effectively. Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
|
|
|
|
|
08-28-2008, 06:19 AM
|
#30
|
|
Senior Member
Join Date: Mar 2007
Location: CHARLOTTE NC USA
Home town (ECUADOR) South America
Posts: 542
|
Marie , in Charlotte NC in carolina medical center they used the latest cutting edge technology NOVALIS ...if you need it dont worried about house,trnspostation , food ...and support ...you all have in my house ...
__________________
Lily Diag April/06 5 months after give birth my son Max stage IV mets on liver (5 tumors) 38 year old, her2+++ and ER+PR+ from32 nodes 4 positives mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery 5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression 03-05-08 start tykerb & xeloda
|
|
|
|
|
08-28-2008, 07:41 AM
|
#31
|
|
Senior Member
Join Date: Apr 2008
Location: me & my three HANDSOME grandsons!!Jacksonville, Arkansas
Posts: 354
|
Believe,
I wish I were closer to you so I could hug your neck. No words that I could say would lessen the pressure. Thinking of you and Ed...
your sister,
Terri
__________________
Terri B.
46 yrs. young
Dx IDC 3/6/08
1.5 cm & .6 cm grade III, Stage IIA
es/pr- Her2+++, 9/9 richardson
Double Mast w/expanders 4-14-08
3/9 nodes positive.
additional excision rt breast 4-25-08
weekly T/H x 12 (6-2-08) Done!
FEC x4 (9-8-08) Last one 11-10-08!
Herceptin complete 8/10/09!!
33 RADS DONE 2/13/09!
rt. breast biopsy 3/20/09 .. B9!!
reconstruction complete!
DEEEEEEported on 5/19/10!!
almost 5 YEARS NED!!
|
|
|
|
|
08-28-2008, 07:58 AM
|
#32
|
|
Senior Member
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
|
With Tears Flowing I Write:
How blessed I am to have you in our lives. The support has kept me strong and steady. ......Opening your homes to me, how beautiful; not to mention the sweetest most unselfish form of love you all provided us with when we needed it most. This news was as hard to take as the initial diagnosis.
I do feel better about things today and much has to do with you. Imagine that this recent Brain MRI was not suppossed to be done until 6 months per the Radiologist Oncologist???
I made Ed have an "Imaginary Headache" (hehehe) at 3 months and we discovered this EARLY enough. Ed's Oncologist was pleased to order this knowing I was being my demanding self AND because he too was not comfortable waiting that long. I will start a special post letting you all know the "War Against Brain Mets"
Thanks to all for this unconditional love and support.
And here is to being a demanding patient/caregiver, I just saved my husband's life by following in the footsteps of the best!!
PS: His doctor's reply to my "Sorry for being a demanding caregiver" was: ....."But in a good way"...hehehe!
__________________
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!!
|
|
|
|
|
08-28-2008, 08:25 AM
|
#33
|
|
Senior Member
Join Date: Aug 2006
Location: Poland Ohio just a little south of Youngstown.
Posts: 473
|
Love you two so much! You and Ed are always in my prayers.
Hugs
__________________
Susan
Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!
|
|
|
|
|
08-28-2008, 08:32 AM
|
#34
|
|
Senior Member
Join Date: Mar 2006
Posts: 306
|
Marie,
The best part of the report was: no edema or mass effect. That's a good thing, as you've probably heard from the doc by now.
My current 6-(8?) brain mets include one on my posterior brain stem, too. Most others are in cerrebellum. They are from 5mm up. Including three that are over 1cm.
I concur with what Joe and Brenda have said.
Mainly, you want Ed to be treated by a person/facility with MUCH experience when it comes to choosing the type of focalized rads.
When I had my 2nd occurance, those numbered 14. One on brain stem then, too.
Two headframe type SRS procedures were done...... leaving 6 mets to deal with. Those 6 were treated with CyberKnife in two sessions two days apart. (no headframe)
My current, (3rd occurrance), of 6-8 have been treated with mixed results with Xeloda/Temodar. Tykerb was added last fall, but I had some small progression after that.
My onc created my dosing schedule for me, from information I brought him. We have tweaked both dosage and schedule over the past THREE YEARS. My last scans, end of last month were read: No change. That is what I like to hear 
After the first four months on my X/T combo, scans came back at 50% shrinkage, twice! That was the best, ofcourse. Smaller shrinkages have been the more common. And slight progressions. And 'stable', no change.
WBR would not be in anyones thoughts at this point. Too soon since Ed's. If EVER again.
So, if Ed is not symptomatic at this point? You DO have some time to look around and see what is available in your own area.
That's my story and I'm sticking to it... 6 yrs with brain mets, refusing WBR all the way.
I know you will do all you can for Ed, finding and getting the best tx under all known circumstances.
xoxopatty |
|
|
|
|
08-28-2008, 08:40 AM
|
#35
|
|
Senior Member
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
|
Hello Dear Friend
Patty, your words are so important to me and I was so happy to see you once again rescue me. You are one of my inspirations!! Lots of Love>>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!!
|
|
|
|
|
08-28-2008, 10:00 AM
|
#36
|
|
Senior Member
Join Date: Oct 2005
Posts: 3,519
|
Yep! Patty rescued me as well. Her info was very interesting to my doc... and her path helped us plan out my path. Helped us see that there were lots of creative, individualized options beyond the standard of treatment, WBR... She is one of my heros, too!
__________________
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."
|
|
|
|
|
08-28-2008, 10:16 AM
|
#37
|
|
Senior Member
Join Date: Jul 2006
Posts: 869
|
Please know that I care about you both, Marie and Ed....one step at a time dear friends. You have received good advice here. love, Ceesun
|
|
|
|
|
08-28-2008, 09:13 PM
|
#38
|
|
Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
|
Marie
I am sorry to hear of this development for Ed - but I know you and he will fight the beast with all you have.
Sending prayers and hugs to you both.
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
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
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
|
|
|
|
|
08-30-2008, 04:07 PM
|
#39
|
|
Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
|
Marie, I'm sorry to hear the news about Ed. I've had trouble getting to the site lately. You and Ed have been through the wringer before. You are both very strong and tough and will get through this just like you've overcome many other obstacles. My prayers are with you, sweetheart.
__________________
For Nicola
|
|
|
|
|
08-30-2008, 04:12 PM
|
#40
|
|
Senior Member
Join Date: Jul 2006
Posts: 869
|
Count me in on the prayers and best wishes. Ceesun
|
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 06:50 AM.
|
Linear Mode
