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Old 12-06-2009, 06:05 PM   #61
Gerri
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Re: vickie h update

Dear Cap,

This is such fabulous news!! I am so happy for Vickie, and of course her loved ones. HOPE is a powerful gift, and you have just given that to so many here.
__________________
Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
**********
Enjoy the little things, for one day you may look
back and realize they were the big things.
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Old 12-06-2009, 09:07 PM   #62
Jackie07
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Re: vickie h update

Thank you so much for the wonderful update! Please thank Vickie for us - she's such an inspiring warrior - and let her know that she's in our prayers.
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
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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
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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.
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Old 12-07-2009, 03:06 AM   #63
Ellie F
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Re: vickie h update

Thank you for such wonderful news. I have been praying so hard for Vickie and can't stop the tears rolling down my cheek.Please tell her that I am thinking of her and remembering her kindness to me.
Ellie
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Old 12-18-2009, 01:19 PM   #64
juanita
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Re: vickie h update

sending prayers and positive thoughts!
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dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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Old 12-23-2009, 02:29 PM   #65
StephN
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Re: vickie h update

Dear Vickie and Cap -
Want you to know you are thought about, and all best wishes for a healthier new year to come. My prayers are sent your way for continued response to the new treatment.

Peace, joy and understanding.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 12-23-2009, 02:55 PM   #66
Chelee
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Re: vickie h update

Hi Vickie & Cap, Just wanted to let you both know I continue to keep Vickie in my thoughts and prayers. I hope shes contining to get a good response and that the side affects aren't to hard on her. Please let her know she is thought about and how much we love her.

You two have a very Merry Christmas, and may the New Year bring you improved health and much happiness. Again, always in my thoughts & prayers!

Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 12-23-2009, 07:36 PM   #67
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Re: vickie h update

Thank you all for your good wishes and love. I read your emails to Vickie almost everyday. She has been such a trooper and has now been able to remove all of the dressings over her right breast and back as the bleeding has subsided. She is extremely tired these days and I've never seen her this low on energy. Some days she is in bed almost the entire day, other days she forces herself up and takes small walks or visits with friends. All in all, she is doing much better as far as the mets (we think). Last week she had a Passport put in because her other port is covered by tumors and they could no longer access it.
We go back to Idaho on the 28th of this month and on January 18th she'll have a ct scan to see if this is working. Please continue your prayers for her. She cries when she thinks of all of her wonderful sisters and brothers here, tears of joy for your friendship and compassion. Please know that not a day goes by that you are not in her heart and prayers. Have a very Merry Christmas, Hannuka and Kwanza.
Much love from our family to all of you,
Cap
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Old 12-24-2009, 01:06 AM   #68
Mary Anne in TX
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Re: vickie h update

Hi Vickie and Cap! It's the incredible courage and love you two share with each other and all of us that touches me so this Christmas season. I see that picture of Vickie at the beach in my mind and think of her as strong, busy and so full of life! Much love to you both along with many prayers for Vickie's treatments to kick in gear and work it's magic. May the angels surround you all this holiday season. ma
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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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Old 12-31-2009, 07:04 AM   #69
Ellie F
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Re: vickie h update

Hi Cap
Would love to have an update of how Vickie is doing if you have time
Love Ellie
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Old 01-02-2010, 05:23 AM   #70
Midwest Alice
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Re: vickie h update

Dear Cap, So happy to hear the news. Please give Vickie a hug and tell her I love her. She was my first friend on here and she is so important in my journey. She is so strong and I am so proud to call her my friend. She has now traveled for treatment 2 and praying the treatment helps heal her body.
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Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

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Old 01-02-2010, 06:45 PM   #71
tricia keegan
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Re: vickie h update

Sending hugs and good thoughts to Vicki that this treatment works
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 01-05-2010, 06:52 AM   #72
schoolteacher
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Re: vickie h update

Hope you and Vicki are doing well.

Amelia
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Old 01-05-2010, 09:07 AM   #73
Shobha
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Re: vickie h update

Continuing to pray for great results for Vicki!! Thanks so much for keeping us posted!

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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Old 01-12-2010, 09:00 PM   #74
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Re: vickie h update

So sorry I haven't been back to update you. Vickie and I are meeting with a Hospice nurse next week just in case. We will know more about what lies next after she goes to Idaho with our daughter on Monday and Tuesday of next week. Dr. Tezcan wasn't sure that this treatment is working but will have the option of adding perzatumab or something like that to her next treatment on Tuesday. She gets a CT scan on Monday and we will know so much more then.
IT has been hard to get her to eat much of anything as her appetite is waning. She's lost a lot of weight but she stays hopeful even when it is hard for her to get out of bed. She so misses all of you, your birthdays, your encouragement, your compassion. She truly loves you as her sisters. She has not posted because she gave her lap top to one of our grandsons for Christmas. She has a notebook but can't get it to work.
as soon as I get it up and running she will be posting to all of you. Thank you for your prayers and love. She will be posting by next week again.
In the meantime she sends you all her love and prayers. You mean the world to her, each and every one of you.
Cap
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Old 01-12-2010, 11:03 PM   #75
StephN
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Re: vickie h update

Thank you, Cap. We very much appreciate any news.
Fervent prayers coming to Vickie for a resurgence of appetite and scans that show she is improving.

Years of treatment can just wear a body out. We got news of a 100-year-old family member's passing just this evening. He was in his home and managing his own life til the end.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 01-13-2010, 04:35 AM   #76
Chelee
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Re: vickie h update

Cap, I'm so glad you had a minute to give us an update. Not a day goes by that I don't think of Vickie...she really is such a special Her2 sister. We all love & miss her so much.

When she first started this TDM1 trial it sounded like it was doing a good job. I hope the scan shows that it's been doing more then they think for Vicki? Maybe adding the perzatumab will to the trick & get her stable again. I just wish she didn't have to go thru any of this...my heart goes out to her.

I'm just so sorry to hear Vicki isn't feeling better. But I still have so much hope that they can turn this around. I sure hope she can get some food in her...I know how hard it can be during treatment. You guys have probably tried everything over the yrs of battling this...but has Vicki tried Ensure? It has to be "cold" though. That's the trick! It's just a thought.

I know you and the entire family are going through alot right now but we are so thankful for the updates. Tell Vicki she is always in my thoughts and prayers.

Sending a big hug for Vicki! God bless you all.

Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 01-13-2010, 06:36 AM   #77
WomanofSteel
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Re: vickie h update

Cap thanks for the update. I am so sorry that Vickie is having such a tough time of it. Meanwhile we are praying for her. She means the world to us too.
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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
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Old 01-13-2010, 08:22 AM   #78
Mary Anne in TX
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Re: vickie h update

Hi Vickie! Now, isn't it just like you to give your lap top to your grandson! I'll bet you've always been the good fairy in your family! Sending you tons of love and prayers again today! I'm wishing for quick miracles for you all! luv ya muchly, 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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Old 01-13-2010, 10:16 AM   #79
schoolteacher
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Re: vickie h update

Cap,

Thanks for the update on Vickie. She is a warrior.

Amelia
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Old 01-15-2010, 11:39 AM   #80
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Re: vickie h update

Thanks Cap for the update on Vicki. I come here to this site just to see how she is doing. Please tell her she is in my prayers daily. She is such a warrior after 6 years with IBC. Most people with that disease never get this far. She is truly inspiring to all of us.
Best wishes,
Randi
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