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07-10-2009, 08:57 AM
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#21
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Dear Marie and Ed,
I'm holding both of you in my heart. Can you feel the virtual hug, coming all the way from the Netherlands, Europe?
Am sending rays of hope and healing energy your way. May the double-edged sword do its bit and send those mets to Kingdom come!
You have been so strong and so brave and so loving! This too shall pass.
Love
Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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07-10-2009, 08:58 AM
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#22
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Oh, My Sweet Sister Marie,
My heart aches for what you are going through. Throw out that guilt because you've been one of the "heroine" caretakers in this world. You have loved, supported, sung, laughed, cried and held on to Ed with the compassion of a saint. In fact, I think of you as St. Marie...so strong with great fortitude and determination. I'm proud to call you my sister.
Hug Ed for me and tell that crooner to keep singing (I Did It My Way).
Prayers to you always,
Vickie
__________________
Love and Hugs, Vickie
Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.
Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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07-10-2009, 09:08 AM
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#23
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Yes, Marie, please do not EVER think you are not doing enough!!! You are the bedrock on which the Mighty Oak grows! Prayers to you at this tough time XOX Suzan
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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07-10-2009, 10:24 AM
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#24
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Senior Member
Join Date: Jan 2007
Posts: 368
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You and Ed are in my thoughts and prayers, Marie.
__________________
12/12/06- IDC Stage III, 4x A/C, 35 rads, Herceptin 1 year
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07-10-2009, 10:46 AM
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#25
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Marie - you can't anticipate every episode, and Ed doesn't expect you to... please don't beat yourself up. I am praying hard for both of you. You and Ed are phenomenal people.
__________________
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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07-10-2009, 10:51 AM
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#26
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Senior Member
Join Date: May 2006
Posts: 3,142
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~Mighty Oak Needs Your Prayers
Positive thoughts and a prayer are going your way from Hawaii. I think it would be a good idea to tell Ed's doctor what happened. I also think it might be a good idea to look into getting some help around the house for the both of you, so that you can spend more time together doing things you both enjoy as much as possible without having to think about daily chores.
I am happy the Ixempra seems to be helping a little.
I hope the doctor can add the other drug as soon as Ed is ready.
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07-10-2009, 10:52 AM
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#27
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Senior Member
Join Date: Sep 2006
Location: Chicago, IL
Posts: 105
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Marie - You and Ed are in my thoughts and prayers. You are truly an amazing person. Much love, Lisa
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07-10-2009, 10:52 AM
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#28
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Senior Member
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
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With my prayers and love
Marie Sweetheart,
You are Caregiver Of The Year for several years running. Don't be feeling any guilt. Look what you have done and continue to do! You educate yourself, you remain grounded and wise and thoughtful in all your decision-making, you celebrate for other's good news, even as you struggle with Ed's and your difficult situation. You are grace in action. A radiant Spirit. Please don't forget that!
Over a year ago I sent you and Ed a card of encouragement. It touched me deeply and I had to send it the moment I picked it out in the card store. It had a picture of a mighty oak and spoke of how strong a tree with deep roots can be, even in the midst of a major storm. Is that when you began referring to your/our Ed as Mighty Oak? I think of that every time you post and wonder. Anyway, stay strong, please. All sentiments previously sent to you still stand!!
I agree with everyone's brilliant comments above, so I won't go repeating them. Except that I HOLD YOU AND ED IN MY PRAYERS EVERY DAY AND HAVE FOR, WELL FOREVER IT SEEMS. I will rathet up my appeals to God in your name and Ed's however. I promise.
BTW, in '07 my DH developed syncope. He has 2 different blood pressures. He was collapsing into unconscious on the floor, first down -- with his hands out like he was about to sit down -- then out cold and back. Once he broke his foot. Thank goodness not his head. But, Marie, please check into this.
Paul was given meds from his cardiologist and ALWAYS, since that repeated collapsing thing, sits for a few minutes (after rising from a lying down position) to let his body stabilize. Then he slowly gets up, and doing that, plus taking the meds the cardio man prescribed, has kept him well. Just thought I should mention, as your description reminded me.
Sending you much love and a very big, long squeezing hug,
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...
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07-10-2009, 10:53 AM
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#29
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Guest
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Have been and continue to think about both of you.
I would also agree with the thoughts of others who suggest you try to get some help at home, you deserve it.
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07-10-2009, 11:08 AM
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#30
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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Marie,
Both of you are in my prayers. As Brenda said, you cannot anticipate every episode and as many have said, there is no room for guilt in your battle. I pray god will guide you and be both your strength.
love,
shobha
__________________
DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
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07-10-2009, 12:10 PM
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#31
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Marie,
The Mighty Oak and you are in my prayers.
Amelia
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07-10-2009, 12:20 PM
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#32
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Senior Member
Join Date: Jul 2006
Posts: 869
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Marie, Love and prayers to you and the Mighty Oak. You both have been so strong. I am honored to know you thru this website. Ceesun
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07-10-2009, 01:29 PM
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#33
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Senior Member
Join Date: Aug 2008
Location: San Francisco
Posts: 260
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Marie, you are such a kind and loving soul. I pray for you and Ed all of the time - praying especially hard for you both now.
__________________
4/17/08: Dx Stage IV at age 30 - extensive mets to liver, lungs, and bones. Er/Pr-, Her2+++
April 08-Aug 08:Taxotere, Cytoxan, Herceptin, Zometa - complete response!
Sept 08-Dec 08: Herceptin +Zometa for maintenance.
Jan 09-April 09: Brain mets. Add Tykerb. Watch and wait.
April 09: Gamma Knife 10 brain mets, add Xeloda.
Sept 09: Gamma Knife to 1 brain met.
Nov 09- April 10: Lung progression, add Gemzar to Herceptin, Zometa.
May 10- Sept 10: HER2 Vaccine Trial
Sept 10: Add Tykerb for more brain mets.
Oct 10: Gamma Knife to 7 brain mets.
Dec 10: Switch from Zometa to Denosumab.
Jan 11: Gamma Knife to 3 brain mets.
March 11: Gemzar/Herceptin for lung/bone progression.
April 11: More brain mets - Intrathecal Herceptin
June 11: Ixempra/Herceptin for lung, soft tissue progression.
Aug 11: Gamma Knife
Sep 11: Abraxane/Herceptin
Future: NED
Send me a PM if you'd like to follow my journey on Caringbridge.
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07-10-2009, 01:37 PM
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#34
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Dear Sweet Marie,
I too send my hugs from Canada, and lots of prayers for you and Ed. "Guilty" is a word that should be stricken from you vocabulary, Marie- you have got to be the most dedicated spouse I know (along with Eric).
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!!
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07-10-2009, 03:01 PM
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#35
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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Marie and Ed
I am so sorry to hear that Mighty Oak is having to struggle so..
You are such a wonderful wife & caregiver to Ed, Marie and I know that he knows this. Try to get a little MARIE TIME for yourself - I am sure that Ed would love that.
I wish that I knew you both "outside" of this site. You both sound like wonderful, compassionate people.
You both take care and keep SINGING.
__________________
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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07-10-2009, 04:08 PM
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#36
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Marie, all I can do is echo everyone else. You and Ed have my love and prayers. You hang in there, sweetie.
__________________
For Nicola
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07-10-2009, 04:58 PM
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#37
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Marie,
I am echoing everything StephN said in her post. Please check into the home health care eligibility and get some help. The situation has become 'unsafe' for Ed. At least get some advice from a home health care nurse who can assess the situation and put into some safety measures. In the meantime, please know that we are keeping you and Ed in our prayers.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"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." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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07-10-2009, 05:53 PM
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#38
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Thoughts with you and Ed!
Hi Marie,
You are among the greatest caretakers I know. I was so sad to read your post. I would say that you are under "beyond stress." Stress multiplied a hundred times!!!!! I hope that you are able to find some help. However, all the assistance in the world cannot alleviate the emotions you must feel at this time.
Please know that my thoughts, hopes and prayers are with you. Although I don't always respond to each post you make, I read them all. They are inspiring and even uplifting in a situation that is very difficult for you. I certainly wish that I could have met you and Ed at the Dana Farber conference. You are a very courageous and loving caretaker.
Again, please know that my thoughts are continuously with you and Ed.
Fondly,
Barbara H.
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07-10-2009, 06:17 PM
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#39
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Ah dear Marie, another beautiful post that draws us into your moment allowing us to "see" your anguish as if we were there helplessly by your sides. Words evade me. Please know I am in tearful prayer for you and for Ed. May we have miracles.
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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07-10-2009, 06:22 PM
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#40
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Senior Member
Join Date: Jun 2009
Location: Los Angeles, CA
Posts: 309
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Marie and Ed-
My loving thoughts and prayers go out to you at this time.
__________________
DX: 11/08 Age: 53
Surgery: 1/09
Bilat Mastectomy, no reconstruction
ILC-4 tumors-1.7 cm,1.5 cm (2).8 cm
DCIS-11 cm
All tumors Grade 3
All tumors ER-0%/PR-0%
All tumors HER2+
IHC-all tumors Overexpression/borderline
FISH 2 tumors Her2-Negative
FISH 2 tumors Her2+ Equivocal
Stage I, 0/1 nodes
LVI-Indeterminate(treated as positive)
SPR Score 8/9
Ki-67 20%
BRCA genetic test 1/2=negative
Chemo: 6 rounds TAC Feb-June 2009 w/Neulasta
Herceptin: 6/12/09-6/4/10 52weeks
HNPCC genetic test: negative
Port Placement-9/23/09 Port Removal 6/25/10
Echo's every 3 months-All normal
2/09 Staging PET/CT showed 0.2 micronodule upper R lobe-lung-Onc does not think this is mets--
6/5/09 AND 10/09 CT scan 0.2 micronodule unchanged
1/10-PET/CT-uptake in nasopharynx-
1/10-MRI All normal
6/10-Bone Scan-clear
12/10-PET/CT-All Clear-NED
12/11-PET-All Clear-NED
12/12-PET-All Clear-NED
12/13-CT w/contrast Head, Torso-All Clear
12/14-CT w/contrast Head-All Clear
2/15-Core needle biopsy-R scar line
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