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05-20-2011, 05:37 AM
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#1
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Member
Join Date: Apr 2011
Location: Ohio
Posts: 15
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Has anyone asked for a test to be redone
I had a brain mri about 6 weeks ago, all normal; went to another facility with new & improved super machine due to shaking in arm, leg & teeth on left side & showed highly abnormal brain activity, fluid in brain lining 95% cancer & 2 tumors. Doc wants to start wbr! I can't believe this. Appointment today with onc & referral to neuro onc. Help! Need support!!!!
__________________
 10/08 found lump - not even due for mammogram yet. PR/ER/Her2+ Had lumpectomy for 2 lumps 1.1cm & 1.0cm. 4/12 positive lymph nodes. Chemo TCH x 6, radiation. Scans all clear.
10/10 dry cough lung mets, sternum, trachea, bones.
12/10 started T/X
2/11 most gone except for small area in lower lobe of left lung & mixed bone response.
5/11 pulled muscle in groin, had MRI of skeleton, found 2 tumors one pressing on spinal cord & 1 on lumbar.
Started radiation immediately to shrink. Getting first shot Monday for bones (Xgeva sp?) starting back on Hercepin Friday & new plan of attach.
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05-20-2011, 02:27 PM
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#2
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Has anyone asked for a test to be redone
Hi,
I'm sorry about the new development. Rest be assured that your brain mets can be treated and many members on this Board (including the founder, Christine) have successfully treated their brain mets.
You can use the 'Search' function (on the top bar) to search for previous postings on the subjects. There are threads such as 'long-time survivor', 'long-term survivor', 'calling for stage IV sisters'... etc. where you can read others' stories.
Because of the vast volume of new articles from the ASCO meeting, members might have been distracted and not seen/answered your posting. Please don't be discouraged. We will be acompanying you in this fight, and you will win!
__________________
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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05-20-2011, 02:37 PM
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#3
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Has anyone asked for a test to be redone
How about getting the test redone on the old machine. If there are differences, so be it - if NOT, then there was no change and the change you are seeing now is only due to the machines and not you.
Just a thought
__________________
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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05-21-2011, 12:08 AM
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#4
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Has anyone asked for a test to be redone
Cyalata,
I'm so sorry to hear your news. I can only imagine how upsetting it must be. Jackie is right...there are other Her2 sisters on this board that have had brain mets and been treated and done well. I know some of the members will surely reply and offer their support because they have been through this too. Your onc and medical team will come up with a good trt plan for you. (It's always good to get a 2nd opinion for a trt plan if you have time?) Hang in there...although easier said then done under circumstances like this. I'm sure some others will chime in soon.
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.
Last edited by Chelee; 05-21-2011 at 12:44 AM..
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05-21-2011, 12:56 AM
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#5
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Has anyone asked for a test to be redone
Cyalata,
Lani has posted a new ASCO article about the treatment of brain mets: "active treatment option and a viable alternative 2 immediate Whole brain radiation" http://her2support.org/vbulletin/showthread.php?t=50053.
I hope you will get to read the abstract before your meeting with your oncologist.
__________________
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; 05-21-2011 at 01:01 AM..
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05-21-2011, 05:50 AM
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#6
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Member
Join Date: Apr 2011
Location: Ohio
Posts: 15
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Re: Has anyone asked for a test to be redone
Thank you all - I know brain mets can be controlled but mine happen to be in the lining which is more difficult. I saw my onc yesterday & they need to do wbr because there are 2 small lesions on the brain as well as the lining. I will be starting on Monday as I'm on high dose steroids & asymptomatic so they're ok with that. She's also referring me to a neuro oncologist who specializes in my particular case. So I'm starting to feel a little more hopeful about treating this. I'm so thankful I found you all - support means soooo much. Love, Gail
__________________
10/08 found lump - not even due for mammogram yet. PR/ER/Her2+ Had lumpectomy for 2 lumps 1.1cm & 1.0cm. 4/12 positive lymph nodes. Chemo TCH x 6, radiation. Scans all clear.
10/10 dry cough lung mets, sternum, trachea, bones.
12/10 started T/X
2/11 most gone except for small area in lower lobe of left lung & mixed bone response.
5/11 pulled muscle in groin, had MRI of skeleton, found 2 tumors one pressing on spinal cord & 1 on lumbar.
Started radiation immediately to shrink. Getting first shot Monday for bones (Xgeva sp?) starting back on Hercepin Friday & new plan of attach.
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05-22-2011, 02:20 PM
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#7
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Has anyone asked for a test to be redone
Hi Gail,
I really am so sorry you even have to go thru all this. I know it must be scary and quite over whelming to say the least. It's good that your onc is following thru with with a neuro oncologist that specializes in cases like yours as I think you will find that helpful. We have one member on this board that is dealing with brain mets that is trying a new trt method and getting very exciting results already. In case you haven't read her posts here are the links to them. It might be worth showing your onc in case it fits your situation in any way?
http://her2support.org/vbulletin/showthread.php?t=49623
http://her2support.org/vbulletin/showthread.php?t=50032
I know your starting wbr tomorrow...wishing you the best. Positive thoughts coming your way.
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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05-22-2011, 08:55 PM
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#8
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Has anyone asked for a test to be redone
I have my fingers crossed for you too !!!!!!!! Take good care of yourself.
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