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10-15-2009, 03:22 PM
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#1
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Recommendation from my 2nd opinion...
I'm still making lots of calls & am trying to tie up loose ends so don't have time to go into everything...but I did see Dr. Slamon as you all know by now.
My appt. went well and it was so nice to meet him in person and get a treatment option from someone I can trust! We discussed some things and he immediately wanted me to get into the T-DM1 trial. He seemed very excited about the results of this and said he did not want to see me on chemo of any kind. So I've spent the day trying to see where I can get into this if at all possible. One place just happens to be where I am currently going for treatment...but they have not called me back.
I just called Genentech & she sees no openings near me either. The other places that were mentioned to me are more the 50 miles away...so 100 plus round trip. I am in a hurry to find out if I can get into this because my onc had already given me a loading dose of herceptin which would disqualify me for the T-DMI study if it's been within 21 days of starting. But Dr. Slamon said I'd be fine because I'm not due for my next dose of herceptin till this coming Monday. But I seem to fit the criteria to join this if I can find an opening and I am so praying that I can.
I'm thinking I would do well on this study because I just found out my tumor markers for the 1st time in a year have went down since I did the loading dose of herceptin alone. (So that shows me I do respond to herceptin.) Which means the T-DM1 should work great for me So please keep those fingers crossed because I need to find a study thats still open. I'm update more later...I really need to continue with my calls. But Dr. Slamon is such an awesome onc/human being. 
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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10-15-2009, 03:30 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Recommendation from my 2nd opinion...
Thanks for the update Chelee. I have been thinking about you all day.
Keep those fingers dialin'! I know you'll find a trial out there.
Love and a hug
__________________
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"
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10-15-2009, 04:19 PM
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#3
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Recommendation from my 2nd opinion...
I just called Dr. Slamon's office to talk to his NP. I told her I'm not having any luck in getting calls backs about this study from my cancer center. I've tried all day. Interesting enough she named an oncologist that is part of running this study at my cancer center and it just happens to be MY onc. (Thats sure nice that my onc never mentioned this T-DM1 study as an options for me) She just said I could do herceptin with Navelbine, Taxotere, Tykerb or whatever I wanted...it was up to me.
So anyway Dr. Slamon's NP made some calls and so far it looks like the study is full at my center? So I might have to drive up to UCLA to do this. We left here yesterday at noon and did not get home till 8:30 PM...the traffic was unbelieveable! The things we do once we live in cancerland. Dr. Slamon's NP will be making some calls and get back to me tomorrow...I sure hope this can be worked out.
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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10-15-2009, 04:33 PM
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#4
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Re: Recommendation from my 2nd opinion...
Dear Chelee,
I have been on pins and needles waiting to hear from you.
First thought which came to my mind is everything happens for a reason. Try to see the good in going to UCLA....sure it is a trip - but it's for you! Maybe you can get in touch with an organization that transports....I remember hearing that they assist people with travel arrangements.
What better center to be in than with Dr. Slamon?
I knew you would feel better once you saw him. I know the traffice from South Ca. to Santa Monica is not easy.
Does anyone know when this TDM1 trail will be get past FDA?
So happy for you Chelee...keep us posted.
Hugs,
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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10-15-2009, 04:35 PM
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#5
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Guest
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Re: Recommendation from my 2nd opinion...
I am so glad the appointment went well. Maybe you can call your old onc and see if she will try to pull strings with Genentech to get you into the study where you were being treated. Alternatively, even if you join in another area, maybe you could do the infusions at your local place.
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10-15-2009, 04:37 PM
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#6
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Recommendation from my 2nd opinion...
I am so glad you got to meet and speak with Dr. Slamon. His suggestion sounds promising, so I hope it cn be worked out. Keep putting one foot in front of the other and keep knocking on doors and making phone calls. You are doing a good job of advocating for yourself.
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10-15-2009, 05:24 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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Re: Recommendation from my 2nd opinion...
Good luck Chelee!!!!
__________________
Rhonda
Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)
2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)
" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
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10-15-2009, 05:47 PM
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#8
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Re: Recommendation from my 2nd opinion...
Chelee, my treatment for 3 1/2 years was 3 1/2 hours away in San Antonio! I did the last 2 1/2 years by myself. I'd do it over again in a heart beat! There are some gifts in those trips! Go where you get Great Treatment and Care!!!! Keep dialing! 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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10-15-2009, 06:12 PM
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#9
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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Re: Recommendation from my 2nd opinion...
Chelee,
Here are two studies of T-DM1 here in California:
California T-DM1 Studies
Regards
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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10-15-2009, 06:23 PM
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#10
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Re: Recommendation from my 2nd opinion...
High 5's you Chelee....sounds very encouraging. I'm in your corner as we all are.
__________________
"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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10-15-2009, 08:29 PM
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#11
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Senior Member
Join Date: Jan 2009
Location: Colorado Springs, CO
Posts: 430
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Re: Recommendation from my 2nd opinion...
Chelee this is wonderful news. Hope you find something soon!
__________________
9/15/08 (age 52) - Mammo: calcifications
9/22/08 - Biopsy: DCIS, grade 3. ER,PR status: Pos. in 75-90% of tumor cells.
10/01/08 - Ob/Gyn appt.: found complex, mostly cystic mass on right ovary - 11cmx12cmx 8cm
10/15/08 - Hysterectomy & Oophorectomy, Lumpectomy: Cyst on uterus, not ovary - all was benign. Breast - 5 of 6 bad margins. 2 Sentinel Lymph nodes removed, both negative. Stage 0, Tis, N0
12/11/08 - Mastectomy & DIEP reconstruction: Surprise! 2 cm Invasive DC, grade 2 found. One benign internal mammary lymph node. Stage 1, T1c, N0, all clean margins. ER+ (Proportion Score = 2/5, Intensity Score = 2/3) and PR+(Proportion Score = 3/5, Intensity Score = 2/3)
HER2 score = 3+
1/09/09 - Oncotype DX: Recurrence S/core of 60 !?!?! ER status is NEG!! PR staus is NEG! HER2 score = 12.2 (still positive, greater than 11.5 is positive).
1/20/09 - Started chemo: TCH
5/26/09 - FINISHED CHEMO!
1/05/10 - FINISHED HERCEPTIN!
1/22/10 - Port-a-catheter removed!
3/07/18 - Still NED
9/10/23 - Still NED
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10-15-2009, 10:12 PM
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#12
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Guest
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Re: Recommendation from my 2nd opinion...
Chelee ~ Been trying to post!! I keep getting kicked out! I just knew H was doing something good for you! So happy that you saw him and he's trying to get you into this trial.
Much hugs ~ Ruth
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10-16-2009, 01:36 AM
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#13
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Recommendation from my 2nd opinion...
Chelee
Soooo glad you have got a good option. Talked to my onc about your appt with Dr Slamon. He said he thought he would want you on T-DM1 as he believes this type of treatment will become the way forward!!
Hang on in there. As already said some journey's have hidden gems
Love Ellie
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10-16-2009, 02:24 AM
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#14
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Recommendation from my 2nd opinion...
Keeping everything crossed for you Chelee!
__________________
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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10-16-2009, 05:15 AM
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#15
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: Recommendation from my 2nd opinion...
Chelee - This is encouraging news from Dr. Slamon! Keeping fingers crossed for a study opening for you not too far away. Good job! pam
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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10-16-2009, 07:35 AM
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#16
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Senior Member
Join Date: Jul 2008
Posts: 186
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Re: Recommendation from my 2nd opinion...
"Does anyone know when this TDM1 trail will be get past FDA?"
Roche is on record to present in Dec at SABCS results from a 3rd line MBC TDM1 phaseII trial and based on positive outcome from this evaluation to request FDA approval for this setting in 2010.
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10-16-2009, 09:25 AM
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#17
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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Re: Recommendation from my 2nd opinion...
Praying that you find a TDM-1 trial near you asap! So happy to read that your TMs went down after a Herceptin!
hugs,
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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10-16-2009, 10:23 AM
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#18
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: Recommendation from my 2nd opinion...
Chelee,
I can relate to the commute for a trial. I'd say 50 miles is for wimps because MY commute is 75 miles one way...but you get extra credit for it being LA traffic.
It is a pain, but you can make the most of it. I have been able to work mine so I get the FIRST appointment of the day - which means less likelihood of them being behind schedule. Of course that means I have to leave before dawn but the traffic is better then. I've even learned how to use public transportation which is not much better here than in LA.
Plus, now I know all about SF...oh, and I'm getting the opportunity to get a fabulous therapy that is not yet available.
Not trying to make light of it, believe me the commute did wear on me. But when I balanced the potential benefit of being in the trial against the PITA of getting there, it was the right choice for me.
Also, just a comment on your doctor - it may be she didn't mention the trial because she could not offer it to you as it is full. But still...
__________________
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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10-16-2009, 12:59 PM
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#19
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: Recommendation from my 2nd opinion...
Chelee,
Let us know when you find a trial. Glad to hear that Dr. Slamon was encourgaging.
Amelia
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10-16-2009, 02:09 PM
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#20
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Recommendation from my 2nd opinion...
Thanks to all for the support I sure appreciate it. However today I'm getting discouraged again. Now I hear the TDM1 trial is NOT at my cancer center because they didn't want to many sites for just the TDM1. They are trying recruit woman for the "Cleopartra" study. The coordinator said if I could just wait a little longer they will have that going soon. (I'm afraid to wait any longer then I already have.) My recurrence has spread every where...I need to be on something soon. I don't know how long this wait is? Plus its a double blind study.
Dr. Slamon was very clear that with my family history and my compromised lungs he wanted me on the TDM1 trial. So that is what I'd hope to get into. And I'm still in a HMO so I don't know if I drive to Santa Monica if everything will be covered? But will gladly do it if it can be arranged. I'll call the HMO and see? I am getting really stressed out...every time I think I have a game plan...something else pops up as I've seen happen to far too many other woman on this board. It's always something. I want my 2nd dose of herceptin Monday if I can't get something lined up right now...especially since with just the loading dose my TM'ers dropped for the 1st time in a year. I want to know I have some protection. I don't know what to do and it's Friday. Friday's are the worse day to get people to call you back.  Now I don't know what to do about Monday's Herceptin? Do it or not? I have a headache!
Chelee
I nee
__________________
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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