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07-16-2010, 09:28 PM
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#21
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Re: It's back...
Chelle,
Have not been posting much - but always thinking of you.
Hated to read your news..... 
But I do know that you are now under the best care with Dr. S and his group. So much good news on the TDM1 trial, and Dr. S. advised that from the start.
Sending you much love and warm hugs your way.
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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07-16-2010, 10:50 PM
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#22
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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Re: It's back...
Chelee, I am so sorry you are going through this. I am glad to see that you will finally have some of the best doctors on your side. I know the problems you have had in the past. I was ready to come down there and whip them for you. You'll get this under control girl, you've been through a lot worse than this and you're still kickin....luv ya..sherry
__________________
Sherry
Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year
Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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07-17-2010, 12:46 AM
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#23
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: It's back...
Hello Chelee,
Damn it coming back! What did the onc say? and how do you feel about what they suggested? Was surgery or radiation discussed? You are definitely in the best hands anyone could wish for so that alone should make you confident and comfortable.
Let us know.
Health and Happiness
Big hug and love
sarah
__________________
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07-17-2010, 11:35 AM
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#24
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: It's back...
Dear Chelee -
Well shoot. Hopefully the Navelbine has shut down any other mini-leasions and this darn node is the main offender.
As for that node, I know that Sheila had a node by her neck removed, but she still had other disease. Maybe you can contact her.
I have another friend here who had a node above her collarbone removed as well. It had been a recurring one like Sheila's.
Maybe radiation is a better route, if you want to treat it by itself, then move to systemic?
Hope the good doctor had a plan for you.
__________________
"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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07-17-2010, 03:01 PM
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#25
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Re: It's back...
Damn, Chelee, that's not what we wanted to happen, isn't it? So let's hope your doc and you can beat this thing asap.
I wouldn't worry too much about lymphedema. I had 3 nodes removed and never had problems with that. I think reducing the tumor load is usually a good idea.
Sending lots of hugs from overseas,
Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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07-18-2010, 01:28 AM
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#26
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: It's back...
I met with Dr. Hurvitz and she is just like Marcia described her...positive and upbeat. She has one trial she spoke to me about which is a randomized , muliticenter, phase III trial with TDM-1 VS Capecitabine + Lapatinib. My main interest is TDM-1...I really don't want to do Tykerb/Xeloda.
I realize it's a 50/50 chance of getting the TDM-1...but I'd hate to wait and go thru this whole process and end up with Tykerb/Xeloda. I was surprised I was offered this trial because Dr. Slamon told me at a prior visit he did not want me on chemo. But she explained that the TDM-1 trials are over and this is now phase III. They now want to see which combo works better for women with MBC. I was hoping to discuss other options since my recurrence is only in the one node...but her main interest is the trial which she is very excited about. I hate all the decisions we have to make regarding trt options. (Mentally it's exhausted.) Speaking for myself of course. lol
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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07-18-2010, 09:13 AM
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#27
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Senior Member
Join Date: Oct 2009
Posts: 46
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Re: It's back...
Chelee,
Good luck with your decision. What did your doctor say about surgically removing the lymph node?
JB
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07-18-2010, 01:00 PM
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#28
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: It's back...
JB,
My onc said removing the node is one possibility but a big risk for lymphedema. Since my onc knew I was going out to UCLA...she said ask Dr. Slamon about it. I did get to ask Dr. Hurvitz and she also said there is risk for lymphedema. Then followed-up by saying I should leave it there because it would be a good way to moniter if my trt is working.
If I sign onto the trial it's for two yrs...although I can drop out any time. I just want to make sure I weigh all my options and currently I don't feel I have enough information to make that decision.
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; 07-18-2010 at 02:16 PM..
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07-18-2010, 01:17 PM
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#29
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Senior Member
Join Date: Dec 2008
Location: Southern Indiana
Posts: 455
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Re: It's back...
HeyChelee, Just wanted you to know I'm thinking about you. ALice
__________________
Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!
1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."
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07-18-2010, 03:42 PM
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#30
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: It's back...
Chelee,
I vote for entering the trial. Both treatment options are good ones. And if TDM-1 shows big advantage, they might stop the trial and give everyone TDM-1. It's quite possible since it's already a PhaseIII and TDM-1 has been showing good results.
As for the node - I don't know how big it is or anything. But I think Lymphedema is something can be managed. I've been wearing my compression sleeve and glove daily (supposed to wear them at least 8 hours a day) after I contracted cellulitis. It's not bad at all. I was fitted for my 2nd pair just 10 days ago. And the lady told me the new ones can be washed in the washer. (I've been handwashing mine every night.)
But it's true that it can be a good gauge if you leave it while undergoing treatment.
I just thought that you should go for the trial. Just my own opinion.
__________________
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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07-18-2010, 06:21 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: It's back...
Jackie, Thanks for your input because I have no support other then my Her2 sisters...so I really appreciate it. I wish they could promise me TDM-1...but they can't. If they hand me pills I will know which arm I'm in and could drop out I suppose.
I'd still like to talk to a breast surgeon about removing this node. Find out exactly where it's located in there since not one of the onc's I've seen can find or feel it? The node is 1.5 x 2.4 cm. Decisions, 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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07-18-2010, 10:10 PM
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#32
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Senior Member
Join Date: Aug 2006
Posts: 492
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Re: It's back...
Whose node is it anyway?? I am sorry there are so many decisions... it must be hard. Hang in there Chelee, will be thinking of you and wishing you strength!
__________________
Are we there yet?
Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07
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07-19-2010, 07:07 PM
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#33
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: It's back...
Margerie, I'm not sure who's node it is...but if you know anyone that wants it just let me know. lol I still haven't made a decision...things keep changing. Everything I was told about the trial has changed. I was told they would accept all the scans I just had...but now I'm told I have to do all of them down there. (I just had two PET/CTs in the last 3 months...why another one)
I was also told there is a 21 day washout period so I have to go off Herceptin/Zometa/Femara. Makes me nervous to be off these drugs...especially Herceptin. I've only been on the Femara 13 days...it hasn't even had a chance to work yet. I will be very disappointed to go thru all this just to be put in the arm with Xeloda/Tykerb. I can get that combo right at my centre without having the washout period. The fun never stops in cancerland.
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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07-19-2010, 08:30 PM
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#34
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Senior Member
Join Date: Oct 2009
Posts: 46
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Re: It's back...
Chelee,
Sorry you are going through this. If you progress on Xeloda/Tykerb, will the trial let you have T-DM1? That could be a benefit for you of joining the trial. Also, if you have a three week dose of Herceptin, then you wouldn't be losing anything during the three week washout period. (Maybe I don't understand the timing of the washout. Perhaps it goes 6 weeks out from when you had the infusion.)
Best,
JB
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07-19-2010, 10:41 PM
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#35
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: It's back...
JB, The washout period of 21 days is ok for Herceptin as you said...but the coordinator said depending on how things go there could be some delays getting started. What adds a bit of anxiety for me is it's already been a bit over 2 wks since my PET scan that showed a recurrence. So I'm anxious to get started on something. All these 2nd opinions and appts seem to take so much time when I'm worried about progression. Then adding another 21 days on top of all of it seems like a long time.
There was no mention if I could switch to T-DM1 if I progressed on Xeloda/Tykerb? But that is a great question...I will call tomorrow and find out. Thanks for bringing that up!
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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07-20-2010, 04:38 AM
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#36
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: It's back...
Hello,
Try to relax, anxiety is not good for this disease. I agree with the others, get into the trial and should you end up in the wrong arm and not feel comfortable, you can always tell them, I'm going to drop out because I'm not comfortable with this choice and listen to what they say and you may well get into the one you want so don't worry about that until you know. Assume you'll get into the T-DM1.
Good luck, waiting is the tough part but you are so lucky to have the very top people in the field looking after you.
hugs and love
sarah
__________________
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07-20-2010, 03:07 PM
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#37
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Re: It's back...
Chelee...I hated to read about the recurrance...but wanted to let you know that after I had the node removed in 2003, more came back, and they refuse to remove again, they also said easier to monitor by feeling, without so many CT's.
As far as the axillary node, i had one show up while on Tykerb/Herceptin, and it enlarged even while on the Avastin, to the point that i could feel it when I put my arm against my side....after 2 rounds of the Metronomic chemo combo, the node is not even palpable...so again, a good way to track the effectiveness of this treatment...of course I have to get a CT anyway, as I have lots of other nodes misbehaving!!!
You are in my prayers and heart that you will get the TDM-1, and let it do its number on that stubborn cancer!!! Keep Strong!
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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07-21-2010, 05:07 PM
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#38
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: It's back...
Sheila, Thanks for taking the time to reply...especially when I know how full your plate is right now. Your so kind. The onc I just went to told me the same thing you did...leaving the node is a good way to moniter trt.
After you had the node removed...how long was it before the another nodes popped back up? If I thought I could get a good yr out of it I would go for it versus starting chemo right now. Since this is a marathon as they all say...and my CA27.29 is so low (15) I was hoping to get lucky enough to maintain a while on herceptin/Zometa/Femara alone. (I just started the Femara and have hopes maybe it will shrink that node?) (I think I stopped the Navy Beans too soon.) But started having lung issues and was on oxygen.
I did find a TDM1 trial which guarantees me the drug...however I found out I would not qualify for it since I haven't had Adria.
I just wished they would get TDM1 out so anyone that needs it could have it. If anyone has had Cyberknife to just one node in axilla pls reply. (Or PM.)
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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07-21-2010, 10:26 PM
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#39
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: It's back...
Chelee -
There is a Compassionate Use location for T-DM1 open in Highland, CA. I don't know where that is, but I am hoping it is not too far for you to check it out.
You are in my prayers as you grapple with this new decision.
__________________
"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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07-22-2010, 01:05 AM
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#40
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: It's back...
Hi Steph, Yes Highland, CA is one of them I called about. They have two T-DM1 trials here in CA. The man at Genentech told me they both require that I have had AC. He went over all my history...I've only had a Taxane. So I'm excluded from those two darn it. I appreciate you telling me just in case I would of missed 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.
Last edited by Chelee; 07-22-2010 at 01:09 AM..
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