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Old 05-23-2008, 05:08 PM   #1
eric
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T-DM1 - 2nd tumor markers very good

Caryn's 2nd month tumor marker on this drug has come down from 970 to 330. Yipppeeee!!!!
I don't have to tell you that positive results like this make the tough side effects she's having easier to deal with.
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Old 05-23-2008, 06:18 PM   #2
lilyecuadorian
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great ....fantastic....
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Diag April/06 5 months after give birth my son Max
stage IV mets on liver (5 tumors) 38 year old,
her2+++ and ER+PR+ from32 nodes 4 positives
mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen
NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery
5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression
03-05-08 start tykerb & xeloda
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Old 05-24-2008, 09:54 AM   #3
Jackie07
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Thanks for sharing the wonderful news. We are happy for both of you. Which tumor mark is it?
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NICU 4.4 LB
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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
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Tamoxifen B. scan
Irrtbl bowel 1'09
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hptc hemangioma
Vertigo
GI - > yogurt
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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)
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Last edited by Jackie07; 05-24-2008 at 09:57 AM..
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Old 05-24-2008, 12:40 PM   #4
Julie2
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Great news Eric. It is going to be a miracle drug for her.

Julie
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Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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Old 05-24-2008, 04:39 PM   #5
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thank you and YAY!

So great of you to post this tremendous news Eric. I am serious when I tell you that this made my day. Would you mind refreshing me on Caryn's side effects? Are they improving over time? How was it jumping through the required hoops to begin the trial? I ask as I contemplate this in the future for myself, but I am so truly, very, very happy for you and Caryn. Tell her how excited we are for her.
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dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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Old 05-25-2008, 04:22 AM   #6
eric
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Thank you all.

The big drop is in the CEA. This has always seemed to be the more telling of the 2 markers for Caryn. Don't know why as the CA27 (I believe) seem to be more telling for most women with bc but not Caryn.

Joy, she's on the weekly trial and dealing with slight queaziness and fatigue but the toughest side effect has been inflamation. It's causing problems with her eyes and lungs. She's developed bumps around her cornea that are exposing some nerves and making it very difficult for her to keep her eyes in any light. The bigger problem though is the inflamation in her lungs that has her Onc seriously concerned. It's caused her a lot of chest pain and has made it hard for her to breath. A not so bright dr told her that she had the lungs of an 82 year old. Not true as the inflammation is slowing the amount of hear she can exhale at a time. She's now on a steroid that seems to be helping.

Love and light,
Eric
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Old 05-25-2008, 04:02 PM   #7
chrisy
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Eric,
That's great news about the tumor markers! You're right, it makes it a bit easier to live with the side effects. That said, I hope the steroid can get the inflammation under control - Caryn definitely doesn't need to be dealing with that.

BTW, thanks again for sharing the eye thing. I think I've got a similar issue going on, and now I can not only be more vigilant, but also push the suggestion that this may be due to the T-DM1. People definitely need to be aware of this one as it's pretty unusual. For me, it manifested as tearing eyes, moving to irritation.

Keep up the good news!
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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 05-25-2008, 06:02 PM   #8
Mary Anne in TX
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Fantastic news, Eric! Go low numbers! ma
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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 05-26-2008, 04:52 AM   #9
eric
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Chrisy,

If you're on the same drug and having the same problems I would definitely suggest going to a cornea specialist as an opthamologist didn't know how to treat it.

Eric
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Old 05-28-2008, 01:08 PM   #10
chrisy
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eye problems

Hi Eric,

I started with my optometrist and have a referral at the cancer center to an opthalmologist...so depending on how that goes, I may or may not have to continue climbing the specialist ladder!

The optometrist basically saw abrasion around the perimeter (where the edge of my contact lenses would be) and thinks it's basically very dry eyes. Hopefully the eye rehab program will help get things back to normal, or what passes for normal! Like we need another thing to deal with, huh!
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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 05-28-2008, 05:35 PM   #11
eric
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Hi Chrisy,

It was explained to Caryn and me that very dry eyes is a fairly common side effect of this treatment so I'm hoping you find it easy to treat. You're right, there's already enough on plates.

Eric
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