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10-07-2009, 08:16 PM
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#21
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Senior Member
Join Date: Jun 2009
Posts: 343
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Re: Chelee's third opinion - Dr. Slamon!
I'm so happy for you! Wishing you the best.
__________________
Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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10-08-2009, 05:53 PM
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#22
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Chelee's third opinion - Dr. Slamon!
I have been getting all my medical records together for my appt. with Dr. Slamon. I was reading all my onc "notes" and she is so FULL of herself. So much of what she says is just not true. She also takes credit for everything I had to fight for and push to get. She's something else.
I've mentioned this Her2 board before & she see's it as just a little "chat" room & that's how it's worded in her notes. She has always told me to stay off the internet! To limit my on time here. (Since when is it NOT good to research & stay on top of all the latest treatments!) I see mentioned in her "notes" many times that I was on the internet again...and mentions that I was on some Her2 board. (I've tried so many times to explain what this board is but she has no interest & won't listen.)
But I find it funny because if Dr. Slamon reads her notes about me being on "some Her2 board"...he ought to know exactly which board she is talking about. My onc it making light of this board like it's ridiculous. Dr. Slamon has met so many of us from this board little does my onc know. (Jokes on her.)
She really seems to have a problem with me going online now that I've read all her notes. Ha!
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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10-08-2009, 07:05 PM
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#23
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Senior Member
Join Date: Jan 2009
Location: Colorado Springs, CO
Posts: 430
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Re: Chelee's third opinion - Dr. Slamon!
I hope you never have to go back to her Chelee. But if you do, next time, print up some of Lani's posts, or some of the other informative threads. Let her read some of the "FLUFF" you have been "WASTING YOUR TIME ON" !!! I'd be interested to see her jaw drop and have you pick it up for her.
What a poor excuse for an oncologist. She ought to have her license revoked.
__________________
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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10-08-2009, 07:35 PM
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#24
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Senior Member
Join Date: Oct 2005
Posts: 823
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Re: Chelee's third opinion - Dr. Slamon!
Chelee I tell you what IF I had this Onc I would give them a piece of mind and then I would run not walk ASAP to another Onc, that would take me seriously. I certainly hope this woman is not going to be your doctor??
__________________
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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10-09-2009, 10:40 AM
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#25
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Chelee's third opinion - Dr. Slamon!
I hope you never have to see your old oncologist again.
Doctors write some pretty strange stuff in patient's files. One doctor wrote that I am obsessed with my health. Maybe I asked too many questions that day. I just took it with a grain of salt and asked even more questions the next time I saw him and even elaborated on the questions he seemed to be most upset about. Smile. Ha ha. He didn't write about my so called obsession again.
By the way, according to federal law we are entitled to have copies of our records, including test results, notes and other stuff. I sometimes read my file when I am waiting for the doctor to show up in the exam room.
If you want to know what your doctor really thinks about you try it sometimes.
I wish you the best of luck with Dr. Slamon. I hope he can suggest something great for you. You might want to ask him to refer you to a new oncologist in your area if he can't accept you as a full time patient himself.
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10-09-2009, 02:36 PM
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#26
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Chelee's third opinion - Dr. Slamon!
Chelee,
It sounded like she's trying to protect herself by taking credit of the things you had fight hard to get.
My first family doctor, who wrote 'I told her this would not be the cause of her headaches,...' (I got the medical records for the lawyer my boss had gotten me after my brain tumor was finally diagnosed) offered me to see a psychiatrist. I refused his offer and changed to another doctor. It took me another 7 months, with increased symptoms, to finally get a correct referral to a neurologist from another family doctor (who also took credit of the referral when I was the one that had tried to rule out everything before getting that one - suggested by my gynecologist when I called and asked him if I should go see him. And the 'staff' in that family doctor's office asked me, "why do you need to see a neurologist?")
My oncologist presribes antidepressant when he saw the first drop of my tears this spring. He comforted me by saying that he'd known me for these many (6) years and that I had always been strong. He didn't even realize that he was part of the cause of my acting upset. Dispensing medicine - that's an oncologist's speciality, I guess.
When I acted upset with my current family doctor, he offered me a referral to the psychiatrist. Referral - that's what a family doctor do, I guess.
The problem is that our doctors, be it oncologists or family doctors, are not capable of (or not willing to spend time) communicating with us. They wanted to send us to someone who is specialized in 'communication'.
I'm so happy for your getting to see the 'expert'. Take it easy now and take care.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
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
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
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.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
Last edited by Jackie07; 10-11-2009 at 04:09 AM..
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10-09-2009, 09:54 PM
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#27
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Senior Member
Join Date: Sep 2005
Posts: 208
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Re: Chelee's third opinion - Dr. Slamon!
Great news, know you must be tired but happy to have this set up, will be thinking of you and sending out those positive vibes,
Hugs,
Diane
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10-10-2009, 05:22 AM
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#28
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Senior Member
Join Date: Dec 2007
Location: Avilla, Indiana
Posts: 261
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Re: Chelee's third opinion - Dr. Slamon!
What terrific news! You deserve the best.
__________________
-Dana-
]
Diagnosed - Nov. 2, 2007 at 45
Lumpectomy - Nov. 13, 2007
Tumor 1.2 cm
Stage 1 Grade 3
ER/PR - Her2 +++ (3.8)
Taxotere/Carboplatin/Herceptin- 6 rounds
Neulasta
Radiation 33 treatments - will be done 6/6/08
Herceptin through 12/08
12/07 MUGA 61%, 4/08 MUGA 60%, 7/08 MUGA 64%
three wonderful daughters, a terrific husband,
Life is Good
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10-13-2009, 12:22 AM
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#29
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Chelee!
Oh Chelee....I am just super elated for you!! I have not been around much due to a national dental convention in Honolulu for 4 days, home for 2 days, then off to California for about a wk (emergency trip). FInally home on Sat and tonight i jsut picked up on this post!!
Oh that sounds just so perfect Chelee!! Your prayers are answered!! when you meet with Dr. Slamon, you might want to ask him if he would mind if you tape the consult. I did that with Dr. Pegram and am glad that I did.
I can't wait to hear all about your visit with him!!
Hugs Chelee!!!! Yea!!!!
HarrieCanarie
ps...thanks for moving this up Steph. I would have missed it.
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
Last edited by harrie; 10-13-2009 at 12:25 AM..
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10-13-2009, 06:20 AM
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#30
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Guest
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Re: Chelee's third opinion - Dr. Slamon!
Oh Chelee it makes me sick and angry to hear that she said stay off the internet and that this site was fluff!!!! speaking for myself, this site has been incredibly helpful and supportive.
I feel lucky to have an oncologist, Prof. Namer, here in France who reads what I bring him off the internet - he is in no way offended because he's too knowledgeable and interested to be, and he generally knows the doctors in the articles and writes down things for me to look up on the internet!!!! what a difference.
but it's not the first time that I've heard this from patients about their doctors. Some feel challenged I think by their patients knowing things but hey, it's our LIFE.
My oncologist knows Dr. Slamon and I gave him "Living Proof" which he was very interested in watching.
I can feel your anger and frustration and now that you are going to the horse's mouth, you know you will get the best advice that science can give you by the best expert.
hugs and love
sarah
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10-13-2009, 04:37 PM
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#31
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Chelee's third opinion - Dr. Slamon!
Hi Harrie, Sounds like you've been very busy young lady. You sure get around don't you! I am looking forward to my appt. with Dr. Slamon since it's my onc tells me nothing. I sure got her attention when she found out I was seeing Dr. Slamon. (She told me there would be no way I could get into see him.) She told me yesterday I must have some pull? lol
Her entire attitude changed yesterday when she found out I was seeing Dr. Slamon...she is probably worried I won't be giving her glowing reviews, and boy does she have that right! I'm a mess today because I've been so busy I don't even have all my questions ready for tomorrow...I wanted everything in order and ready to go. But I haven't been able to stop...it's been chaotic to say the least.
Since I can't get my questions answered from my onc...can't wait to see Dr. Slamon. I hear he is a very good at listening and explaining things. So this will be nice since I really don't have a full picture of what I'm dealing with yet since my onc just keeps telling me nothing matters once the horse is out of the barn. I'm sick of her saying that. ARGH! I'll let you all know how my visit goes when I get a chance. Tomorrow will be a long day...but well worth it.
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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10-13-2009, 07:06 PM
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#32
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Chelee's third opinion - Dr. Slamon!
Chelee -
God speed and you know you have the backing of all of us here. Dr. Slamon will look at your tests and you WILL have those thoughts organized to attack the situation point by point.
Rest well, sweetie, even though it is like a kid going to the circus for the first time.
__________________
"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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10-13-2009, 07:18 PM
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#33
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Senior Member
Join Date: Feb 2006
Location: Watkinsville, Georgia
Posts: 356
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Re: Chelee's third opinion - Dr. Slamon!
Chelee ~ Good luck tomorrow sweetie! My thoughts and prayers are with you. Sending positive thoughts! So very glad you get to meet Dr. Slamon so so so happy :-)
Hugs ~ Ruth
__________________
[/SIGPIC]~~~~~~~~~~~~~~~~~~~~~~~~~~~
Diagnosed 6/03 nursing daughter
Dose dense A/C 4x
Modified rad mast 8/03
IDC; 3 cm; 10+/16 nodes; ER/PR-; Her2+++
Weekly taxol w/Herceptin (off label) 12x's
40 weeks Herceptin
Radiation 33x
Reconstruction w/ implants 05 & 07
NED
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10-13-2009, 07:25 PM
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#34
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Chelee's third opinion - Dr. Slamon!
Good luck tomorrow. Enjoy your moment with a true oncological rock star.
Then, find someone who wants to be your partner in treating you.
Love ya
__________________
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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10-13-2009, 08:20 PM
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#35
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: Chelee's third opinion - Dr. Slamon!
Good luck Chelee, let us know how it goes.
BTW when I met with Dr. Slamon in Toronto this past March at the Breast Cancer Symposium at Princess Margaret Hospital, I told him that everyone on the Her2 Support group board sent their regards - he gave me a big smile, and thanked me for that - so he definitely is very aware of this site. Your onc. is probably plenty nervous about your appointment tomorrow.
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
Last edited by caya; 10-13-2009 at 08:25 PM..
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10-13-2009, 09:08 PM
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#36
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Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
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Re: Chelee's third opinion - Dr. Slamon!
Chelee,
Please know that all of us here will be with you in spirit tomorrow. I have been following your posts and can't wait to hear how everything goes. I'm so happy that you got an appointment with Dr. Slamon and will finally get some answers to your questions.
We will be anxiously waiting for an update; try not to keep us in suspense for too long.
Big hugs to you,
Gerri
__________________
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
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10-13-2009, 11:41 PM
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#37
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Re: Chelee's third opinion - Dr. Slamon!
Chelee,
I am just so excited for you that tomorrow is THE DAY!! I will be thinking of you all day My Dear!! You are most definitely in the right direction and with the right person and that alone is one huge answered prayer.
Your past onco is unreal. Let her go and continue on your own journey in the right direction so you can make the best choices for you.
Man, I wish I could just give you the biggest hug ever! I am so just so happy for you Princess!!!
Harrie
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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10-14-2009, 12:43 AM
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#38
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Re: Chelee's third opinion - Dr. Slamon!
Yep. It can be quite illuminating to see what docs put in their notes. Cancer has a way of bringing it to a head but..applies to all docs and NPs. But I have to agree with others here..any onc who attempts to diminish your efforts to be informed in a life or death matter should be suspect.
But..Despite his involvement in Herceptin, I would press Dr. Slamon on benefit of Lapatinib: acts on more her receptors, potential cancer stem cell fighter ( http://her2support.org/vbulletin/showthread.php?t=39323) and has less cardio side effects. Can work in tandem with Herceptin as well.
I would also be curious about his take on prozac and metformin as chemo potentiators. |
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10-14-2009, 12:55 AM
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#39
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Chelee's third opinion - Dr. Slamon!
I think I finally have everything in order for tomorrows appt with Dr. Slamon. Knowing I only have this one appt with him I wanted to make sure I had all my questions in order. I sure hope I haven't forgotten anything?
Caya you are correct about my onc being very nervous about my appt. with Dr. Slamon. Especially when she told me every which way from Sunday I could NOT get in to see him no matter what! Ha! The look on her face really was priceless. I will mention the Her2 board some where in my conversation tomorrow. I'll let it be known that without it I'd be lost since my onc WON'T tell me any thing! (Thats a fact.) I am just so relieved that of all the onc out there I get to see him. I am so tired of not having answers to my questions. My onc talks and says nothing & its just plain mean & cruel.
Actually I hope I don't have too many questions for Dr. Slamon...but I'm feeling overwhelmed and hopefully by the time I leave there I will be feeling much better. (I know I will.) 
Gerri, I will try really hard not to keep you in suspense. The minute I can I will let you know what his recommendations are for me since my onc has NONE. I better get to bed...thank to all of you for your replies/support.
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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10-14-2009, 03:22 AM
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#40
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Re: Chelee's third opinion - Dr. Slamon!
Chelee, take some time to find some peace and calm. This is appt. is about getting your questions answered and getting you on a good treatment track. Don't let whatever your onc has done or said be in charge today! It's your day and time for you to get your answers.
You don't have to do it perfectly. Be present and listen and allow yourself to feel someone caring about YOU!
Much love, 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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