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08-29-2009, 10:33 AM
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#41
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Senior Member
Join Date: May 2009
Posts: 510
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Re: ~This Sounds So Terrible Of Me, Please Forgive Me
Dear Marie,
Just wanted to say that I'm thinking about you and Ed at this difficult time. You two are in my prayers. May you find strength in the love we have in this wonderful group to carry forward the best you can for your loving hubby.
Love,
Marcia (bejuce)
__________________
ER+ (30%)/PR-/HER-2+, stage 3
Diagnosed on 02/18/09 at 38 with a huge 12x10 cm tumor, after a 6 month delay. Told I was too young and had no risk factors. Found swollen node during breastfeeding.
March-August 09: neo-adjuvant chemo, part of a trial at Stanford (4 DD A/C, 4 Taxotere with daily Tykerb), loading dose of Herceptin
08/12/09 - bye bye boobies (bilateral mastectomy)
08/24/09 - path report shows 100 % success in breast tissue (no cancer there, yay!), 98 % success in lymphatic invasion, and even though 11/13 nodes were still positive, > 95 % of the tumor in them was killed. Hoping for the best!
September-October 09: rads with daily Xeloda
02/25/10 - Cholecystectomy
05/27/10 - Bone scan clear
06/14/10 - CT scan clear, ovarian cyst found
07/27/10 - Done with Herceptin!
02/15/11 - MVA-BN HER-2 vaccine trial
03/15/11 - First CA 15-3: 12.7 and normal, yay!
10/01/11 - Bone scan and CT scan clear, fatty liver found
now on Tamoxifen and Aspirin
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08-29-2009, 07:08 PM
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#42
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Senior Member
Join Date: Sep 2006
Location: Chicago, IL
Posts: 105
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Re: ~This Sounds So Terrible Of Me, Please Forgive Me
Marie - I think about you and Ed every day and pray to God for continued strength and love as you continue on this journey.
Love, Lisa
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08-29-2009, 07:34 PM
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#43
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Senior Member
Join Date: Sep 2005
Location: St. George, UT
Posts: 582
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Re: ~This Sounds So Terrible Of Me, Please Forgive Me
Oh, my dear Marie! My heart is aching for you and Ed, and I know all the others here who have read your posts are feeling the same. There are no words to express our sorrow and empathy for what you and Ed are going through. All we can do is express our love and admiration for you two and the mighty battle you have fought, and we continue to send our prayers for God's love to attend you and strengthen you. I have never met you, but I have loved you both as you have opened your heart and shared your fears and your tears. May God and his angels attend you tenderly in spirit themselves and also through the blessed people who serve your needs through hospice. Love and prayers, TriciaK
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08-29-2009, 08:33 PM
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#44
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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
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Re: ~This Sounds So Terrible Of Me, Please Forgive Me
TriciaK, Me Lady......how are you?? I have been thinking of you and your health non-stop. Please know you are in my daily prayers and happy thoughts.>>Marie
__________________
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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08-30-2009, 06:37 AM
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#45
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Senior Member
Join Date: Oct 2007
Posts: 203
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Re: ~This Sounds So Terrible Of Me, Please Forgive Me
Marie,
You never stop thinking of others. Your love for Ed is what makes you want to spare him this suffering. He knows that. Sometimes it helps to tell your loved one that it's okay, he doesn't need to stay for you. You will always love him, but he should go when and if he wants.
That's what we told my grandfather (he had the same brain cancer that Ted Kennedy had) -- and he was gone two days later. I think he just wanted permission to stop fighting.
Best always,
Rebecca
__________________
Dx 8/06 Age 43 Stage IIIA multifocal throughout breast, largest tumor 5 cm, grade 3, comedo, ER+PR+HER+++
Neoadjuvant A/C 4X Dose Dense
11/06 Bilateral Mastectomy (no choice on the right, my choice on the left)
Taxol+Herceptin weekly x12, continuing with Herceptin, finished one year in 12/07
33 Rads
Femara for 5+ years, staying on (started with Arimidex, switched after about a month, much happier)
Abnormal brain MRI shows no cancer, but "extensive white matter diease" - unknown cause
BRCA negative - lots of cancer in my family
survivor of thyroid cancer
also have Crohn's disease
CT and bone scan say NED as of 5/13
dx with severe cardiomyopathy 5/12 (likely due to chemo and Herceptin), ejection fraction in low 20's, now up to 40, went to 50, latest read 12/13 is back down to 35
1/13 Acute pancreatitis - are you kidding me?
9/13 started Humira for Crohn's. starting to have some energy again
B12 and Vit D both needed supplementation
Cataracts in both eyes noted 6/12 - surgery in the next 2-4 years?
4/14 Kidney stones/blockage/infection - related to Crohn's Disease
5/14 My aunt passed away - she was diagnosed after I was with Stage I - not Her2+, then Stage 4 for about one year
6/14 Scans - still NED, thank God. However, broken rib (I didn't notice) lots of bone degeneration osteopenia/osteoporosis. I also still have cardiomyopathy secondary to chemo.
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08-30-2009, 07:13 AM
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#46
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Senior Member
Join Date: Aug 2006
Location: Poland Ohio just a little south of Youngstown.
Posts: 473
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Re: ~This Sounds So Terrible Of Me, Please Forgive Me
Sweet Marie, forgive me for waiting so long to post, I've just been unable to find the words. I have loved and admired you and your dear husband for so long and reading your latest news simply breaks my heart.
I still can't find the words but want you to know that you are in my thoughts and prayers daily.
I pray that God wraps his arms around the two of you and holds you close.
Please know that we all care so much for you.
Love and Hugs
Susan
__________________
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!
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08-30-2009, 08:20 AM
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#47
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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
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Re: ~This Sounds So Terrible Of Me, Please Forgive Me
I think he is holding on to see his 3rd Cancerversary (Sept 7) and our Wedding Anniversary (Oct 21). I have told him it is okay to let go when and if he feels it is time. I try to show and tell him I am going to be fine. Wow, never thought I would be writing this although I knew that someday this was going to take him.>>Marie
__________________
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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08-30-2009, 10:08 AM
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#48
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Senior Member
Join Date: Sep 2005
Posts: 232
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Re: ~This Sounds So Terrible Of Me, Please Forgive Me
Marie,
I wish I could do more to help you. Please know you are loved.
Sending peace, strength and hugs.
Karen
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08-30-2009, 07:50 PM
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#49
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Senior Member
Join Date: Sep 2005
Posts: 290
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Re: ~This Sounds So Terrible Of Me, Please Forgive Me
Marie,
I still fully expect that birthday card from Ed. Tell him I said NO excuses will be accepted. Hang in there.
Tom
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08-30-2009, 08:27 PM
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#50
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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
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Re: ~This Sounds So Terrible Of Me, Please Forgive Me
Gotcha Tom...lol....thanks.>>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!!
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08-30-2009, 09:09 PM
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#51
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Re: ~This Sounds So Terrible Of Me, Please Forgive Me
Marie, I am so glad to hear from you tonight before I go to bed, as I was wondering how things were going. Sinding a great big hug to you both...with love xo 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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08-31-2009, 02:48 AM
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#52
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Senior Member
Join Date: Oct 2007
Posts: 46
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Re: ~This Sounds So Terrible Of Me, Please Forgive Me
Marie,
Just want to say that I love you the way you are.
Hugs,
belle
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08-31-2009, 04:15 AM
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#53
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Re: ~This Sounds So Terrible Of Me, Please Forgive Me
Marie, I wish that "dreadful thing" you have (honesty) was spreading throughout the country instead of swine flu. Hugs and love to you. ma
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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08-31-2009, 05:24 AM
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#54
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Re: ~This Sounds So Terrible Of Me, Please Forgive Me
Hi Marie,
How are you holding up? Thought you might need a hug today, so I'm sending one over. It brings the warmth of the sun, the sweet breeze from the ocean to clear your head, and the smell of a thousand roses to bring you peace.
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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08-31-2009, 06:30 PM
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#55
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Senior Member
Join Date: Jun 2008
Location: NY
Posts: 81
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Re: ~This Sounds So Terrible Of Me, Please Forgive Me
Hi Marie,
this is Sue, tried to pm you but inbox was full.
i just read your post and i just feel the exact same way. i just wish it was over one way or another and i'm not foolish enough to believe there will be a miracle cure. Just wanted to say that i believe that you wish it were over because you love Ed very much, i can totally understand.
i feel so bad for my poor dad who has to watch my mom deteriorate.
Is Ed still on treatment? is he responding to ixempra?
Marie i know you are very very strong, you will get through it, we all will!!
love
-Sue
__________________
Hi i'm Sue. I've been part of the her2support family since 08'. My amazing mother Hong was her 2 stage IV 9 years and bravely earned her wings, I still love this board and continue to her fight. Plz reach out if you want to connect:)
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09-01-2009, 04:26 AM
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#56
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Senior Member
Join Date: Mar 2007
Location: Norco, Southern California
Posts: 53
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Re: ~This Sounds So Terrible Of Me, Please Forgive Me
Marie,
I am praying for you. I am so sorry you are having to go through this. I remember telling my mother-in-law that it was ok to let go. I told her how much we loved her and would miss her, but that we would be alright, and knew we would see her again, so go ahead and go see her husband and her Savior.
She told my husband it made her feel much better, and she went a few days later.
I love you and Ed, and the relationship you have had. Rest as much as you can, take care of yourself and Ed. Sorry I didn't respond sooner, but I couldn't get on yesterday.
God bless you. Beckie
__________________
Diagnosed 4/06, age 55
1.1 cm tumor
Pre-op x-ray caught lung nodules
6/06 - Stage 4, Her2+++, er/pr-
Mets to lungs(largest 3 cm), liver (largest 5.5 cm), and bones
Began taxotere, herceptin, & aredia
7/06 - radiation to lower spine & left shoulder for pain
8/06 - everything smaller
12/06 - stopped taxotere (toe infections)
5/07 - bone mets advancing
6/07 - add navelbine to herceptin & aredia
6/07 - discovered brain mets (3 in cerebellum, largest 2 cm.)
7/07 - WBR, change to Tykerb/Xeloda
9/07 - targeted radiation
10/08 - started navelbine/herceptin
2/09 - brain mets - targeted radiation
5/09 - mets in liver progressing, changed to Ixempra
7/09 - mets in liver still going, to the brain again, on gemzar now
9/09 - gemzar failed, started Doxil today
I know Who holds the future, and I know He holds my hand.
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09-01-2009, 07:09 AM
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#57
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Senior Member
Join Date: Nov 2005
Posts: 943
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Re: ~This Sounds So Terrible Of Me, Please Forgive Me
Maire,
You have proven over and over again to be a sensitive, caring person, not just to Ed, but to many here, offering encouragement and support. Please don't feel guilty about needing a break. Like you said, it has been ten long hard years of ups and downs for you too, not just for Ed. Go buy yourself some flowers and go outside today to re-charge your mental battery. Reach out to others near, for help too. A big cyber-hug to you. Know, too, that Hospice is excellent and offers support to the care-giver and the one ill.
Love and prayers,
Robin
__________________
Robin
2002- dx her2 positive DCIS/bc TX Mast, herceptin chemo
Last edited by RobinP; 09-01-2009 at 07:48 AM..
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09-01-2009, 12:35 PM
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#58
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: ~This Sounds So Terrible Of Me, Please Forgive Me
Just sending love....
I was thinking of you and Ed all weekend. Actually you are my first thought and prayer every day.
But this past weekend we were in the Sierra, hiking past mighty oaks, mighty pines, and tiny flowers growing out of what appeared to be solid rock. Determined to draw every bit out of life possible, just as you and Ed are doing.
You are my heroes.
__________________
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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09-01-2009, 12:45 PM
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#59
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Senior Member
Join Date: Aug 2008
Location: San Francisco
Posts: 260
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Re: ~This Sounds So Terrible Of Me, Please Forgive Me
Oh Marie, I am so sorry you are going through this. Even though we have never met, I think about you and the Mighty Oak frequently and pray for you always. You are an incredible person and I admire your strength and honesty more than you could ever know. Know that there are so many who are holding you up now in your time of need. We love you both!
__________________
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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09-01-2009, 05:06 PM
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#60
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Senior Member
Join Date: Mar 2009
Posts: 508
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Re: ~This Sounds So Terrible Of Me, Please Forgive Me
Hugs and prayers today and everyday, Marie.
Barb A.
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