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Old 10-18-2008, 06:35 PM   #21
Mary Anne in TX
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Watching with chocolate.......
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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 10-18-2008, 06:49 PM   #22
Val Pfeiffer
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OMG--did you guys just see the Siemens commercial???

Joe and Christine were just on the Siemens ad...how cool is that!??!!

Val
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http://valleygirlvnp.blogspot.com/
Dx 11/04, Age 42, ER-/PR-, HER2+++
3 months weekly Herceptin, Taxol. Carboplatin
Significant tumor shrinkage
Mastectomy 3/05; Stage 3b, 9 cm tumor, 5/8+ nodes
3 more months weekly Herceptin, Taxol. Carboplatin
7/05 30 radiation treatments, IMRT planning approach
Started 1 year of Herceptin 9/05
9/06 Began quarterly triple doses Herceptin. Brain & breast MRIs semi annually.
* * * * * * * * * * * * * * * * * * * * * * * * * * *

6/08 Right breast, intraductal carcinoma, high nuclear grade associated with comedo necrosis; extensive diffusely involved the entire biopy specimen. ER+, PR-, Her2 unknown at this point, 07/08 mastectomy.
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Old 10-18-2008, 07:29 PM   #23
Joe
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We were sworn to secrecy until after the video was aired. For those who missed it:

http://www.fliqz.com/aspx/permalink....1d12ef324299c4


Regards
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Old 10-18-2008, 07:33 PM   #24
Chelee
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Val, I'm watching too...but I jumped up during commercial so I missed the Siemens with Christine and Joe DARN IT. But thank goodness I have my VCR running in my back bedroom. I did that in case someone called or inturrupted my show.

I'll have to check it out...thanks for letting us know. Christine & Joe are becoming famous...and they so deserve it.

Chelee
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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 10-18-2008, 07:39 PM   #25
Yorkiegirl
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YES, I saw the commercial, still watching. I broke out in tears over the shower scene with him crying. gotta go finish watching.
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Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
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Old 10-18-2008, 08:03 PM   #26
Mary Jo
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Oh my gosh....I loved the movie. It really made me so incredibly grateful for Dr. Slamon but also to Lilly "T" and to Revlon. I will ALWAYS buy Revlon make up from now on.

Anyway, I really cried and am so incredibly thankful for this wonderful man and I'm so thankful to be alive.

Love to you guys...

Mary Jo
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"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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Old 10-18-2008, 08:06 PM   #27
DianneS
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Question Chemo Questions!!!!

Hi,

I am supposed to start on 4 treatments of some type of chemo then another 4 treatments of another type (8 total every 3 weeks - 8 MONTHS!) then a year of Herceptin. I have noticed that some women do not have to have so much chemo even though they are Stage III.

Why am I getting so much for so long? Is this typical?

Also, what is the general opinion of chemo - is it tolerated mostly ok or do you just feel rotten the entire time?

Diannes

Dx right breast DCIS Aug 08
Bilateral mastectomies Sept. 9, 08
Right breast only Grade 3, 2 cm tumor, her2 positive, weakly ER positive. Nodes negative, no vascular invasion. Stage I-IIA - because of grade 3 and her2.
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Old 10-18-2008, 08:11 PM   #28
Patty F
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I loved this movie. I am still sitting here with tears in my eyes. Very moving and touching. I also saw the commercial. Joe and Christine very nice.
__________________
10/15/07: Diagnosed at age 46 lymph node removal (2)
ER/PR - Her2 +++
11/07: Port Installed
11/07 - 1/08: AC
1/30/08: Right Mast Stage lllC
2/28/08: Start Taxol and Herceptin weekly.
5/15/08: Finished Taxol
8/12/08: Finished 33 Rads
1/29/09: Finished Herceptin
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Old 10-18-2008, 08:15 PM   #29
Val Pfeiffer
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hi Diannes--
Your reaction to chemo depends on what chemo drugs you are getting. Post again with that info, and people will reply. You can of course also ask your onco.

It still surprises me that there are so many different treatment approaches given by different providers around the country and around the world. My tx regime is listed in my signature.

Everyone is different, but I am a Spin (indoor group cycling) instructor (not my day job, but my 5 a.m. job!) and I was able to continue to teach my classes during my chemo. Admittedly Herceptin, Carboplatin and Taxol are not as harsh as others....but try to keep as active as you are able to tolerate and the time seems to go quicker :-)

Good luck!
Val
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BLOG:
http://valleygirlvnp.blogspot.com/
Dx 11/04, Age 42, ER-/PR-, HER2+++
3 months weekly Herceptin, Taxol. Carboplatin
Significant tumor shrinkage
Mastectomy 3/05; Stage 3b, 9 cm tumor, 5/8+ nodes
3 more months weekly Herceptin, Taxol. Carboplatin
7/05 30 radiation treatments, IMRT planning approach
Started 1 year of Herceptin 9/05
9/06 Began quarterly triple doses Herceptin. Brain & breast MRIs semi annually.
* * * * * * * * * * * * * * * * * * * * * * * * * * *

6/08 Right breast, intraductal carcinoma, high nuclear grade associated with comedo necrosis; extensive diffusely involved the entire biopy specimen. ER+, PR-, Her2 unknown at this point, 07/08 mastectomy.
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Old 10-18-2008, 08:17 PM   #30
Val Pfeiffer
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What a story....

I, too, am emotionally drained. What if all that hadn't happened? We owe our lives to that guy. I am, for once in my life, without words!

Val
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BLOG:
http://valleygirlvnp.blogspot.com/
Dx 11/04, Age 42, ER-/PR-, HER2+++
3 months weekly Herceptin, Taxol. Carboplatin
Significant tumor shrinkage
Mastectomy 3/05; Stage 3b, 9 cm tumor, 5/8+ nodes
3 more months weekly Herceptin, Taxol. Carboplatin
7/05 30 radiation treatments, IMRT planning approach
Started 1 year of Herceptin 9/05
9/06 Began quarterly triple doses Herceptin. Brain & breast MRIs semi annually.
* * * * * * * * * * * * * * * * * * * * * * * * * * *

6/08 Right breast, intraductal carcinoma, high nuclear grade associated with comedo necrosis; extensive diffusely involved the entire biopy specimen. ER+, PR-, Her2 unknown at this point, 07/08 mastectomy.
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Old 10-18-2008, 08:45 PM   #31
nitewind
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Great movie. We do owe them so much! Christine you looked great!
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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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Old 10-18-2008, 08:57 PM   #32
Rozebud
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It was amazing. Thank you Dr. Slamon....I praise God that I was diagnosed when I was and not 20 years earlier.

Great job Christine and Joe!
Does anyone know if the women in the original phase II trial are still with us?
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Rose

Dx'd 1/04 at 33, while 33 weeks pregnant

Dx: Stage IIIC IDC, ER-, PR+ (23%), Her2=2.7 (IDC)/7.6 (FSH), 2.5cm primary tumor, grade III, 11/18+ nodes (largest 3.8 cm)

Treatment: A/C *4, T *4, 1 year of herceptin (BCIRG 006), mastectomy, rads (7 weeks), zoladex (5 years) with tamoxifen (2 years)/aromisin (3 years), bilateral SGAP summer 05 at NOLA

Oops, retested tumor and I guess I'm er/pr- after all.
Stopped all hormonal tx 10/07. Periods resumed 6/08. Bye bye hot flashes!!!!

http://www.edrie.com/kopecky
*~VISIT OUR FAMILY!~*
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Old 10-18-2008, 11:05 PM   #33
Soccermom
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Hiya Rozebud!! How are you sweetheart?
Y'all are not going to believe I didn't see it!!!!!! I HAD to go out and completely forgot...thank goodness its on tomorrow night at 7 CST !

Marcia
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Old 10-19-2008, 04:39 AM   #34
RhondaH
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I have NEVER...

cried through an ENTIRE movie...until now. We have SO much to be thankful for.
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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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Old 10-19-2008, 05:38 AM   #35
CoachPlayWin
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What a great story. For those of you who haven't read the book, I really recommend it. It was much less drama and more factual, more scientific.

Hey, does anyone know how to send a message to Dr. Slamon? I feel compelled to thank him somehow.
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dx 07/20/07 with IDC
left MRM with expander 08/07
2.2 cm er/pr-, her2+ all nodes clear
2/08 BRCA negative
4 AC dose dense 09/06/07-10/18/07
12 weekly Taxol/Herceptin 11/01/07-01/18/08
Herceptin 1 year/done 10/31/08!
2/08 reconstuction
port out 12/4/08
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Old 10-19-2008, 06:01 AM   #36
Mary Anne in TX
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Inspiring movie that I hope many watched. I would love for others to know more about this journey and why raising money is so vital. Hope it put pressure on the insurance companies.
And Christine and Joe and the ad was more wonderful! I just wanted to bust my buttons! It just shows how very hard they have both worked and the sacrifices they have made for us!
Grateful, grateful, grateful! 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 10-19-2008, 06:57 AM   #37
Gerri
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This movie, and more importantly the book, Her-2: The Making of Herceptin, a Revolutionary Treatment for Breast Cancer by Robert Bazell, point out how crucial research is and what obstacles researchers must overcome to bring their drugs to market. I agree with CoachPlayWin, it is a great book that gives you the complete history of this miracle drug.

The brave women who blazed this trail for us deserve our utmost graditude. I couldn't help but think of those on this board that are doing the same thing with the T-DM1 trial, and other trials. Thank you, all of you, who are taking part in these ground breaking trials.

Lilly Tartikoff played a huge role in making it possible for this research to move forward. My sister has participated in the REVLON Run/Walk since the first event. She has only missed two times in all these years. I have been walking with her since about 2000. The crowd has now grown to about 50,000. It has become far more meaningful for me since my dx. Each year Lilly Tartikoff introduces Dennis Slamon to the crowd and he talks about the latest research. For the past three years I have tried to get as close as possible to the stage and cheered my head off after his speech. He is my hero.
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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.
- Robert Brault

Last edited by Gerri; 10-19-2008 at 10:02 AM.. Reason: added to it
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Old 10-19-2008, 09:32 AM   #38
Soccermom
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Val , Gerri and all...Wouldnt it be cool if we could all sign a gigunda "Thank YOU" card of some sort???
Marcia
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Old 10-19-2008, 11:21 AM   #39
chrisy
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I watched it mostly by myself...my darling hubby couldn't take it. Too close to home, I guess. We watched the ending together and especially since he hadn't seen most of the movie, he was confused by the last scene - with Dr. Slamon running in the stadium. He didn't understand all the people in the stands and being an engineer type, he always insists on all the details.

So I'm trying to point out and explain the characters they focused on and who they had been in the movie....but I was in tears because really the people filling the stadium were all the people who got a chance to have more life, a better life for however much time, as well as those who just missed that chance.

Me. Us. Those to follow.

Thank you, Dr. Slamon.
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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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Old 10-19-2008, 12:06 PM   #40
StephN
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Wink

That movie touched a nerve deep within me.
My hubby had planned to watch it with me as I have been "promo-ing" it to him for a while now.

So, we sat together on a comfy chair large enough to hold both of us, watching till the end.

Slight digression: In Jan. of 2002, when I was diagnosed with raging mets to liver, I did not know WHAT to do with myself. I did not know if I would live or die. I had not found this support group or any other that could help me know anything, except "the worst." While wandering in a large local book store I ran across a used copy of the making of Herceptin book. This is where I began to see that maybe the treatment I was on might work as it included Herceptin. I tried to channel those women for whom it had worked. I tried to understand the impossible! I tried to believe and have the same degree of faith that Dr. Slamon and his staff had in pushing the drug through development. I used guided imagery to help me in these efforts. I concentrated deeply before going to sleep each night. Perhaps trying to program my body to accept these drugs and fight the tumors. This was a very emotional time for me.

That book gave me some sense that I may have at least a small degree of power in a situation where I felt utterly powerless. But it still felt like Russian roulette.

I began to feel that it was practically a duty to Dr. Slamon and Genentech to be a responder and be a sort of standard bearer for others like me. Why not me???

Thus I feel I owe a lot to Robert Bazel for even writing the story, warts and all. I feel I owe a lot to Lily Tartikoff for believing in Dr. Slamon's idea of targeted antibody therapy. Dr. Slamon comes last but certainly NOT least. I have met him on 4 occasions (in public) and always thank him as best I can without embarrassing us both. I always let him know that I am "still" a living proof that he could be right. (Yes, I did use those words.)

Thus I had a real mare's nest of feelings to deal with even before sitting down to the movie. My husband had forgotten the passages I had read to him those years ago from the book. It became refreshed to him with tons more meaning. Now he really has an even better understanding of how lucky we are that I have managed as well for as long, in spite of all the setbacks.

Knowing Dr. Slamon and having heard him speak several times, I thought that Harry Connick, Jr. played a great interpretation of the good doctor. Have met Mrs. Slamon as well and her character was also well played.
__________________
"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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