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10-16-2009, 02:26 PM
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#21
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Recommendation from my 2nd opinion...
Chelee,
Looks like there are many options there. Hope you'll get the one that's best for you.
Here in Texas, we pretty much have to drive at least an hour to get to anywhere. Just be careful of the traffic and drive defensively. Do you have a 'driver' accompany you?
Hang in there. I'm sending my prayers.
Jackie07
__________________
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
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10-16-2009, 03:18 PM
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#22
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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 sent you a PM with my thoughts...
__________________
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, 04:47 PM
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#23
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Recommendation from my 2nd opinion...
Chelee,
Don't worry about the HMO. 'They should pay' (as my neurosurgeon had told us) for the treatment. Call the Vice President of your insurance company that's in charge of the special contract. Get youself a lawyer just in case. My brain surgery in 1990 was done outside of the network even though my then family doctor thought the network neurosurgeons were 'also good'. I came out of 23-hour surgery without any visible deficit because we had insisted on the neurosugeon in town that was recommended by my neurologist.
My then boss told the insurance company that 'Her [my] doctor is talking about lawsuit' while she's the one that had obtained a lawyer (someone who had just won the 'Texas Young Lawyers Award' the previous year) to work on my case pro bono. Eventually we did not proceed with the lawsuit (though my ex-boss still thought I should have,) but we did learn how to deal with the insurance company.
[2 years ago we had a leaking roof in one of the bed rooms and our insurance agent only offered to repair 'half' of our roof; because of our previous experience with the medical insurance company, my husband was able to get our contractor to talk to the estimator of the insurance company and got us a brand new roof. Another proof to us that the insurance companies are just going to try everything they could to pay as little as possible - even when they know they should pay...]
__________________
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; 11-06-2009 at 08:16 PM..
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10-16-2009, 04:50 PM
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#24
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Senior Member
Join Date: Jul 2008
Posts: 186
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Re: Recommendation from my 2nd opinion...
Chelee, in the last decade Roche has made fortunes from Herceptin. One would think that Genentech is kind of indebted to the inventor of this fantastic drug and would be willing to lean over backward to accommodate Dr. Slamon if at all possible. If the good doctor found that best way for you to proceed with your therapy is to get enrolled into a TDM1 trial, then it's hard to believe that Genentech wouldn't welcome this opportunity to see if doctor's recommendation could be implemented.
Maybe contacting the company directly might present you with some more options. Goodluck.
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10-16-2009, 06:06 PM
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#25
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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'm on information overload and just want to get the ball rolling with something. I really want to do this TDM1 trial...but depending on who you talk to you hear different stories. But someone on this board did clear something up for me that even Dr. Slamon's office didn't mention. There are about seven different trials with TDM1. One place I called said it was a double blind study...I am not interested in any studies where I might get a placebo.
But the study from Dr. Slamon's office shows two arms & it says its Herceptin-MCC-DM1 vs. Herceptin, & Taxotere. So you are getting a drug either way. The only thing is Dr. Slamon made it sound like I would be getting the TDM1 no matter what. I even called his NP and she understood it the same way. He said he did not want me on chemo...and Taxotere is a taxane which is chemo...not that I have to tell any of you that. Ha!
My onc will be back Monday so I'll call her about all this. I also talked to another onc at my center & he said even though I had the loading dose of herceptin & I'm due for my 2nd one this Monday...I could wait as late as Thursday to take it & it wouldn't hurt anything. Plus I still have Dr. Mortimer at COH Thursday.
Schoonder I did call Genentech today asking where I could find an open study. But I might try again Monday and present my situation and see if someone can pull some strings to get me in this study. Dr. Slamon really seemed to think this was the best way for me to go and I trust him. I have so much to get worked out and I'm just mentally and emotionally exhausted right now. This is all so time consuming...I just want to start hitting this cancer with something.
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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10-16-2009, 07:43 PM
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#26
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Senior Member
Join Date: Oct 2005
Posts: 823
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Re: Recommendation from my 2nd opinion...
Chelee all my fingers and toes are crossed as are my doggies paws that you can get into this trial.
Sending out lot's of Cyber hug's to you.
__________________
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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10-16-2009, 08:49 PM
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#27
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Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
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Re: Recommendation from my 2nd opinion...
Chelee,
I am so glad to hear that you have a plan of action, but I understand your frustration in trying to get it going. I can't imagine how tired you must be. Dealing with a recurrence is bad enough, you shouldn't have to work so hard to get the treatment you need.
I wish you the best and pray that things start falling into place for you soon. Rest this weekend and start fresh on Monday. Please keep us updated as much you can.
__________________
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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10-17-2009, 06:37 PM
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#28
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: Recommendation from my 2nd opinion...
Chelee,
This is great news about the T-DM1 trial, and it seems that your appointment with Dr. Slamon went really well.
Everything will work out.
Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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10-18-2009, 12:25 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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Re: Recommendation from my 2nd opinion...
Chelee, I don't know what part of So CA you are located, but why don't you try calling my oncologist, Dr. James Waisman at Breastlink to see if he can help direct you. He is located in Manhattan Beach as well as Long Beach. Number is 310 539-2300. He might be able to help you.
Keeping my fingers crossed for you. At least we all know you are headed in the right direction.
Maryanne
__________________
*** 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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10-18-2009, 02:25 AM
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#30
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Senior Member
Join Date: Jul 2009
Location: Sardegna, Italy
Posts: 362
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Re: Recommendation from my 2nd opinion...
Good luck! I'll keep my fingers (and toes) crossed for you to get into the trial!!! GO GIRL!
__________________
Karen Wheelhouse Age: 46
Facebook id: Karen Wheel
2-09 – Age 44 -Biopsy-Cancer
3-09 – Right Quadrantectomy. Clear margins.
3 lymph nodes taken - all clear
Tumor results: Stage 1, 1.5 cm, Her2 +++
Est positive 80% - Prog 10% - Ki67 postive 30%
4-09 – Became a vegan! pH balance of body - cancer can't grow in neutral pH!
4-09 Started Herceptin & Chemo (9 weeks of Navelbine *)
* FYI - when coupled with Herceptin has the same results as more toxic chemo. No brainer!
8-09 - 30 RADS
9-09 - Said NO to hormone therapy
4-10 Finished Herceptin!!!!
7-10 PET Scan & other exams .... All clear! YIPPEE!!!!
11-10 Breast, organ Ultrasounds and lung x-rays all clear no changes ... NED!
2-25-2011 --- 2 years from surgery and NED!!!!!!
7-2011 Clear bone scan and full body and head MRI! NED! NED! NED! ;-)[/SIZE]
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10-18-2009, 08:40 AM
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#31
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: Recommendation from my 2nd opinion...
hope you find somewhere nearby but if not, maybe you could start on the further away place and then transfer??? also maybe there is some HER2 member living nearby. how often are the treatments? and for how long?
good luck. luck seems on your side.
hugs and love
sarah
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10-18-2009, 09:34 AM
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#32
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: Recommendation from my 2nd opinion...
Chelee,
I just got back from my trip and am getting up to date on your news.
I wish you didn't have to go through all this just to get an effective treatment.
Try and get all the answers you need early Monday and I'll be adding you to my prayers.
'lizbeth
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes
Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"
Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla
Reconstruction: TRAM flap, partial loss, Revision
The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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10-18-2009, 03:02 PM
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#33
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Senior Member
Join Date: Aug 2009
Location: Owasso, OK
Posts: 185
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Re: Recommendation from my 2nd opinion...
Oh Chelee...I am so sorry! How incredibly frustrating for you. Please keep us posted on what you decide. I don't know what the answer is, but Dr. Slamon seems to have a solid reputation and you seem to trust him immensely, so I think I would go with my gut. Good luck and keep us posted.
__________________
Hayley
Oklahoma
3/35/2009 - Diagnosed, age 39
5/7/09 - Mastectomy and reconstruction started. Two tumors found. Tumors were side by side. DCIS tumor was 2.8 cm, ER-, PR-, grade 2. Invasive tumor was 1.1 cm, poorly differentiated, grade 3, ER+90%, PR+95%, HER2+3. Thankfully, no node involvement.
5/29/09 - Second surgery resulting from difficulty healing from mastectomy.
6/2/09 - Began Herceptin treatments
6/23/09 - Began Taxotere and Carboplatin treatments along with Herception every 3 weeks.
10/06/09 - Completed Taxotere and Carboplatin - Yeah!!!
10/27/2009 - Herceptin maintenance and began Femara
12/10/2009 - 2nd stage reconstruction surgery
2/2010 - Body rejected saline implant
3/18/2010 - Second stage reconstruction using silicone implant
5/4/10 - Completed Herceptin - YEE-HAA!
May '10 - Body rejects silicone implant...taking a break.
11/29/10 - Hysterectomy
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10-19-2009, 12:01 AM
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#34
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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 for all the support and ideas...I really appreciate it. I will start early Monday making calls...starting with my onc to tell her Dr. Slamon wants me on TDM1 trial & see if she has any feedback thats helpful? I also want to make sure she knows that the herceptin loading dose alone dropped my TM'ers down to 37....that was a fast drop in only 2 wks time.
I just know I got to get onto some kind of active trt before much more time goes by.
Harrie I did see Breastlink was running a TDM1 study but it was a double blind also. Like Chrisy mentioned...there is at least 7 different TDM1 trials. Slamon wanted me on "just" the TDM1...that was very clear. But if my onc knows nothing I will certainly give them a call. Thanks to all of you for your kind words & prayers...I need them.
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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10-19-2009, 12:11 AM
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#35
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Re: Recommendation from my 2nd opinion...
Even if Breastlink is running the dbl blind, Dr. W may be helpful in directing you to just the TMD1. He is very well-informed and extremely compassinate.
That is basically what happened to me in So Ca. I was looking for answers and the place where I went to inquire ended up directing me to Dr. Pegram. Ended up in the right spot in a round about way.
__________________
*** 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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10-19-2009, 01:27 AM
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#36
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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...
Hi Harrie, You ended up with Dr. Pegram...doesn't get too much better then that.  You certainly landed in all the right places young lady. Extremely compassinate...now those are two words that are to be unknown to my onc. lol I will give Breastlink a call in the morning and see what they say? It's all about getting the right person...maybe that will be the place to direct me to the study I need. I'm willing to call any place at this point. I'll probably call Slamons one more time tomorrow too and see if he can't do something? Wish me luck.
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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10-19-2009, 05:33 PM
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#37
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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 spent the entire day on the phone again trying to locate a TDM1 trial I could do. It's not looking good...long story. So I just got off the phone and the other onc that works with Dr. Slamon suggested said I could try Herceptin, Tykerb & Zometa if I can't get into the TDM1 study. I'll see what the COH onc says tomorrow. So many decisions....
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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10-19-2009, 07:35 PM
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#38
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Re: Recommendation from my 2nd opinion...
Chelee, Can you get into the trial in Idaho? My husband is going to try to get me there ASAP. We could go together. It is the closest one he could find to our California locations. I also have an old friend up there that maybe we could stay with. I don't know anyhting about it yet, but Cap is going to work on it tomorrow. I know there are Angel Flights that go there also.
Sending you my love, sweet sister,
Vickie
__________________
Love and Hugs, Vickie
Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.
Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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10-19-2009, 08:15 PM
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#39
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: Recommendation from my 2nd opinion...
Hi Chelee,
Just keep trying girl, you are a warrior and I'm hopeful something will come your way.
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!!
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10-20-2009, 12:28 AM
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#40
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Re: Recommendation from my 2nd opinion...
Vickie, that is such an awesome suggestion you offered to Chelee. SO nice of you. From one sister to another,....thank you...
__________________
*** 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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