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04-04-2007, 07:25 AM
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#1
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Senior Member
Join Date: Sep 2005
Location: Philadelphia
Posts: 301
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scans are not good
Well, I've been on navelbine/avastin/herceptin since early December, and already it is time to change regines again.... My scans showed some nodules in the lung area getting smaller, but others getting larger, and some new ones. I knew it was getting time to change, as my shortness of breath is much worse.
I guess we're back to the drawing board. As you can see from my signature, i'm pretty heavily treated, so options are few. One thought is that i had a good response on the cytoxin/epirubicin/taxotere, and I can get 2 more treatments of that. Gemzar is an option, as is carboplatin, as is methotrexate - I don't know what else there is. My onc will also try to get tykerb for me -- how long is that taking people to get, and have you had payment issues with it?
I also have to figure out what resources there are for helping my family - our girls are 9 and 11 and I don't want to scare them, but I do want them to be prepared... They're off today through mid week next week for Easter, and the whole family will be together at the Jersey shore, so at least some fun times are ahead for this weekend when the cousins get together...
Regards,
__________________
Shell
init diag 3/17/03-stage IIIC
ER-/PR-/HER2+++
CET x4 neo-adjuvant
lump & SNB 8/03
CET x2
radiation and herceptin/navelbine 11-03-1/04
1st reoccur to lymph nodes 8/04
complete axillary dissection 12/04
herceptin/taxotere til progression (lungs) 3/05
xeloda w/out lapatinib trial 6/05
lapatinib/tykerb added 4/06
ended trial 8/06 due to progression
doxil / avastin 11/06-12/06 - wasn't working
navelbine/herceptin/avastin 12/06/3/07 - progression
gemzar/carboplatin/tykerb 4/07
mri shows extensive mets to bone in pelvic area 6/07
switched to abraxane (3 on/1 off) + tykerb 6/07
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04-04-2007, 07:31 AM
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#2
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Senior Member
Join Date: Sep 2005
Location: OH
Posts: 385
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Shell: I'm sorry to hear things are rough right now. You mentioned you needed to figure out what resources there are for helping your family and the first thing that comes to my mind is Social Security disability. Once approved, you will be compensated, plus your girls would also be alloted money for their care. I don't know if you've looked into this process, but it's the first thing that comes to mind. You might want to do a search for disability and find out more.
Have a great time with the girls at the shore...
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04-04-2007, 07:48 AM
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#3
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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I'm sorry Shell. I pray that your docs can come up with a combination that will help you.
I'm happy you will have fun this weekend with family. Now that's what life is all about. Enjoy your time with all of them.
God hold you close and surround you with His peace.
Love and hugs from me to you.
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
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04-04-2007, 08:37 AM
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#4
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Senior Member
Join Date: Sep 2005
Posts: 556
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Shell,
Please don't loose hope. I am wishing the next chemo will get you into remission.
Julie
__________________
Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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04-04-2007, 09:20 AM
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#5
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Hi Shell!
What a bummer! Your thoughts are with your girls and their care. Bless you!
I did really well with Carboplatin, Taxol, Herceptin - seemed to kill those nasty cancer cells well.
I'm going to picture you at the shore with your family finding some peace for a time and also finding your hope again. It's not easy to keep on keeping on, I know. But when I saw my onc last week, I told him that it seems to me that sometimes it's the little things done with small changes that make big differences.
May your doctors find extreme wisdom and may you find extreme peace and hope!
Lots of love to you, mary anne
__________________
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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04-04-2007, 10:25 AM
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#6
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Senior Member
Join Date: Sep 2006
Location: Houston, Texas
Posts: 624
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I am sorry to hear about your scans, but I agree, don't lose hope. I am praying that your doctors come up with a winning drug combination for you.
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04-04-2007, 12:04 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: Riverside, CA
Posts: 484
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Shell:
What took the longest in getting the Tykerb was scheduling and getting the MUGA scan and the EKG prior to get it prescribed.
It was already on United Healthcare's formulary, so there was no approval delay. My onc faxed in the prescription today, there are only mail order pharmacies that are able to get it.
I'm hoping to get the Tykerb by early next week. Altogether the process has taken about 2 weeks or so.
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04-04-2007, 12:10 PM
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#8
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Shell, So sorry to hear about this turn of events. Keep your faith and the faith that there are new treatments and combos everyday. Tykerb is taking me 3 days to get. Now that it is approved your insurance should cover it. My prayers are with you and the children, Don't give up, there is another way just around the next bend, waiting to bring you into remission. Love and Hope, Vickie
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04-04-2007, 08:07 PM
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#9
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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Shell , just wanted to send positive vibes to you. I will be thinking of you.
I am originally from Margate ...I sincerely hope you are able to make the trip and enjoy your family time down at the "Shore"!
Marcia
Last edited by Soccermom; 04-04-2007 at 08:12 PM..
Reason: adding something
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04-04-2007, 09:33 PM
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#10
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Senior Member
Join Date: Feb 2007
Location: California
Posts: 27
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Shell,
I just wanted to tell you that I will be praying for you and your family. I am currently on Carboplatin/Taxotere/Herceptin and as far as the cancer goes... well I have gone from 7cm tumor and 2 other ones between 2-4 cm to nothing detectable...I go for more scans next week and then into surgery week after that (mastectomy). I will pray the Lord gives you strength and peace and your doctors divine wisdom and your family wonderful Joy..... God Bless you all.
Tricia
__________________
Tricia Velasquez
Bakersfield, Ca
dx Jan 4 2007
er+/pr- her2 +++ Stage 3b
several tumors
largest 7cm
port placed on Jan 18, 2007
Chemo started Jan 22, 2007
Herceptin/ Taxol every 3d week and then my Dr changed me to Taxotere/Carboplatin/Herceptin
every 3d week
Right Mastectomy w/ Lymph Node Dissection 4/19/07
27 removed 9 positive
Margins-clear but wall to wall
Radiation scheduled for 6/07
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04-09-2007, 02:27 PM
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#11
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Senior Member
Join Date: Sep 2005
Location: Philadelphia
Posts: 301
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Thank you all for your info, thoughts and prayers... I'll find out Thurs what the treatment will be.
Esther-thanks for the tykerb nfo...
Marcia - practically neighbors - we're Ocean City!
Kind regards,
__________________
Shell
init diag 3/17/03-stage IIIC
ER-/PR-/HER2+++
CET x4 neo-adjuvant
lump & SNB 8/03
CET x2
radiation and herceptin/navelbine 11-03-1/04
1st reoccur to lymph nodes 8/04
complete axillary dissection 12/04
herceptin/taxotere til progression (lungs) 3/05
xeloda w/out lapatinib trial 6/05
lapatinib/tykerb added 4/06
ended trial 8/06 due to progression
doxil / avastin 11/06-12/06 - wasn't working
navelbine/herceptin/avastin 12/06/3/07 - progression
gemzar/carboplatin/tykerb 4/07
mri shows extensive mets to bone in pelvic area 6/07
switched to abraxane (3 on/1 off) + tykerb 6/07
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