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09-19-2008, 06:45 AM
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#21
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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Joy,
You are in my thoughts. Best of luck to you with your treatment plan.
Hopeful
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09-19-2008, 07:39 AM
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#22
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Dear Joy,
I am sorry to read of the progression to your liver. I am hopeful that you will find the right tx to get rid of the darned liver mets.
Hugs and Prayers,
Lexi
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09-19-2008, 01:03 PM
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#23
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Senior Member
Join Date: Oct 2006
Location: I live in Christmas, MI - located on the shores of Lake Superior.
Posts: 606
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Joy,
So sorry to hear your bad news...but there are so many new things out there - I hope they find something that works for you. Sending positive vibes your way. Hang in there.
__________________
Barb
10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
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09-19-2008, 02:32 PM
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#24
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Hi Joy,
I was just worried about liver mets - had dark, greasy stools lately and minor discomfort around the belly. Got a stool sample and blood test Wednesday. Will see my oncologist Monday.
Like many other members have stated, there are plenty of options out there. Please keep yourself in a positive mood because positive attitude increases endorphin which in turn improves our immune system which improves our fighting chances.
Thinking of you.
__________________
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; 09-19-2008 at 06:36 PM..
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09-19-2008, 05:35 PM
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#25
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Thinking of you!!
Hi Joy,
Your news really upset me. Somehow I felt that this trial would work for you. It just shows that there are many varieties of HER2. I will be sending positive thoughts for you that your team will find the right drug/ treatment options. Keep us posted.
Best regards,
Barbara H.
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09-19-2008, 06:27 PM
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#26
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Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
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sorry that you got bad news. i'll say an extra prayer for you tonight!
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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09-19-2008, 10:06 PM
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#27
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Guest
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Joy, I don't blame you for feeling sad and disappointed and upset. I would feel the same way and most would too. Don't give up hope though, never give that up. There will be something else to hit this nasty disease with. Praying for you and hope they come up with something asap for you. In the meantime Joy, know you have everyone's love and support and we are here for you in good times and bad.
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09-19-2008, 10:20 PM
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#28
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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that was a post by me and for some reason it came up as unregistered user. not sure why but trying to post to let you know who sent that reply.
Rina
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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09-20-2008, 07:18 AM
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#29
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Senior Member
Join Date: Dec 2007
Location: Avilla, Indiana
Posts: 261
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Joy, This is upsetting. Praying for you and hoping your onc will have some news to boost you and another course of treatment that will be successful.
Take care,
__________________
-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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09-20-2008, 09:39 AM
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#30
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Senior Member
Join Date: Apr 2008
Location: NY
Posts: 240
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Joy I'm sending you hugs and prayers..........you've been so upbeat and strong for us here - you have every right to feel angry and upset - I hope your onc will have a new tx plan for you soon!
__________________
xxoo
Kathy
2/5/08 - dx age 53, post-menopausal;
IDC Stage 1, Grade 1
ER+ 90% /PR+ 90% /Her2++++, BRAC1 & 2 neg
3/5/08 - mast with muscle-sparing free tram;
0/7 nodes clear; Stage 1 lymphedema in right arm
3/11/08 - MRSA infection in abdomen causes large hernia
4/11/08 - Oncotype DX score 22 (intermediate)
4/12/08 - Muga score 67%
4/23/08 - Chemo, Navelbine and Herceptin every 2 weeks
8/20/08 - Last Navelbine infusion! Yay!
1/22/09 - First mammo since dx - unaffected breast CLEAR!
1/30/09 - Second Muga score 63%
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09-20-2008, 11:29 AM
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#31
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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Joy
I am sending you all the healing energy I can gather and
hope your Drs. come up with a treatment that is right
for you. There are so many out there. Best of luck and
my prayers are with you.
patb
__________________
patb
Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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09-20-2008, 11:35 AM
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#32
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Thinking of you
Joy,
It just ain't "right", Joy. You are again walking on the edge of uncharted territory. When it comes to the liver the first thought I have is of Full Of Beans and her success with chemoembolism.
How are you feeling physically?
AlaskaAngel
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09-20-2008, 11:50 AM
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#33
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Senior Member
Join Date: Jun 2007
Posts: 216
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I also wish I could offer you advice and could help but all I can do is say I am thinking about you and wishing you well.
Take care and lots of love
Janie
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09-20-2008, 12:23 PM
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#34
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Senior Member
Join Date: Aug 2008
Location: Virginia Beach, Virginia
Posts: 145
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Joy: I think a liver biopsy might be in order. Your Her2+ status may have changed. This has been the case with two of my friends who are long time metsters. It will give you fast results so you can formulate your best plan instead of just trying Tykerb/combos that might not even work.
Cyberknife can treat liver mets. There is one in Boulder Co, RockyMountain Cyberknife Center. WWW.Rockymountainck.com 303-448-4620. Your onc may not know about this treatment, so be sure to check it out yourself if he doesn't offer to facilitate you to the Center.
There is the new chemo drug Iressa that might be an option.
I hope this helps somehow. I wish you and those that love you continued strength and wisdom to battle on. Please let us hear some positive news soon!!!!!!!!!!!
LOL Darlene in Virginia Beach |
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09-20-2008, 01:58 PM
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#35
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Hi,
I hope your docs have tools at hand to help you immediately.
For other ideas to watch and bring up to forward thinking oncs, I reiterate treatments that have caught my attention:
Spheres(Thera or SIRS). You can have interventional radiologists interpret your scan and see if you are a candidate. SIRS is almost identical to Thera but is further along in BC treatment.
Rexin-G has been used/approved in Phillipine (Asian Hospital, Manilla) trials for met cancers for a couple years. They tell me limited use with bc but there is a bc trial in Santa Monica CA currently recruiting in a phase I/II trial. I have talked with teh research coordinator. They are well underway trying different dosage levels. My mom doesn't qualify..no previous chemo, abnmormal liver function tests exclude her. There is the Lazerex foundation that can help with $$.
http://her2support.org/vbulletin/sho...ighlight=rexin
http://her2support.org/vbulletin/sho...ighlight=rexin
There is a human trial in England finishing by end of year on Doxorubicin followed by Zolendronate. I have made some e-mail contact with the lead researcher:
http://her2support.org/vbulletin/showthread.php?t=35392
There is the LIFT trial gearing up for human phase 1 http://www1.wfubmc.edu/LIFT This could be huge based on mice tests but no human data yet.
Lily has looked into this trial.
There is the Vitamin D/macrophage issue as outlined here:
http://her2support.org/vbulletin/showthread.php?t=35531
Writer of article suggests in e-mail to me that an independent onc could get this going? Supposedly N. Yamamoto is talking with Harvard med. I have a friend in Philly looking into the "Socrates Institute.." but says address is in a lower income residential area. Maybe all the research is in Japan? I e-mailed Yamamoto. No bounce back but no reply.
Liver support/anti-met of Milk Thistle here:
http://her2support.org/vbulletin/showthread.php?t=35588 Some oncs won't combine wit htreatment but others will. MD Anderson listing doesn't suggest it's a problem combining but the wording is a bit vague or restrained.
Erbitux/celebrex/ant-inflamm thread here:
http://her2support.org/vbulletin/showthread.php?t=35463
And a stretch here but Biocancell from Israel seems like a promising overall approach.
http://her2support.org/vbulletin/showthread.php?t=35528
I apologise if these things don't feel helpful at this point. I compiled them in case your oncs have the ability and resources to delve further on your and everyone's behalf. If not for immediate use, to hold in reserve. I'm just a scared son with a computer trying to find every option. It would be great if everyone here shared this list with their oncs for feedback. I also have a crude Word document which is a bit more of a paper read if that helps anyone.
Last edited by Rich66; 09-20-2008 at 02:25 PM..
Reason: because I never get it right the fisrt time..see?
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10-21-2008, 04:18 PM
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#36
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Joy
Joy, I was saddened to read your post but I am hoping that you can start another chemo/trial soon if you haven't already. I have failed on Herceptin, Tykerb and several others. I am now on Abraxane/Avastin and am doing pretty good. I go see my onc next week and she is talking about a new trial. I'll let you know as soon as I find out. I have been on chemo since early 2004 and just when I think I've reached the end of the road, a new path appears. Don't give up, Joy, stay just above the anger (but feel free to get it all out anyway you can) and know that there is another treatment coming. I understand how you feel...after 2 months on Tykerb I failed and my mets got worse, really worse.. Sending you lots of prayers and more hope. I'll let you know what I find out as soon as I can. Love, 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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10-21-2008, 04:56 PM
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#37
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Senior Member
Join Date: Oct 2005
Posts: 476
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Joy, from the first day I came to this sight, your name and face have been making a lasting impression on me. It is so unfair that this dreadful disease has impacted you so severly. As a stage 1 person, it is so difficult for me to express my desire to help, but I have no pertinent info to send you, except my sincere wish that a way will be found that can materially change your progression. Good luck and my humble and best wish.
__________________
Ann
Stage 1 dx Sept 05
ER/PR positive HER2 +++ Grade 3
Invasive carcinoma 1 cm, no node involvement
Mastec Sept 05
Annual scans all negative, Oct 06
Postmenopause. Arimidex only since Sept 06, bone or muscle ache after 3 month
Off Arimidex, change to Femara 1/12-07, ache stopped
Sept 07 all tests negative, pass 2 year mark
Feb 08 continue doing well.
Sep 09 four year NED still on Femara.
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10-22-2008, 04:42 PM
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#38
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Senior Member
Join Date: Oct 2005
Location: Saratoga Springs New York
Posts: 136
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Joy, I am so sorry the trial is not going well for you. You are in my thoughts and you always bring "joy" when I read your posts. Please stay strong and hopeful. I know it's easier said than done. I am also fighting a large mass and will be scanned in a couple weeks. Hopefully you still have alot of options and combiniations to try. It seems like there are alot to try. Good luck and take care. Sally
__________________
Dx March 2004 HER2+ er/pr+ 8/16 + lymphnodes mets to the liver Stage IV / 6 cycles of TCH and 33 rads . NED Continued Herceptin 3 years w/ Femara. Tumor markers start to rise in Jan of 2007 and swiched to Tamoxifen. August of 2007 found more mets to liver and lymphnodes outside of liver. Went on Tykerb/Xeleoda--spots on liver gone found large mass between intestines. March 2008 started TCH. Stopped Carboplatin due to allergy. Still on Taxotere and Herceptin. Nov 2008 mass is gone. 3 new spot on liver and one on spine. Radiation on spine. tykerb/gemzar for liver mets. PET in April 09 showed shrinkage still a little activity, continue tykerb/gemzar until Aug 09. PET showed new spot on my spine more on my liver and a bunch of enlarged lymphnodes in upper chest. Start Adriamycin Sep 09. more radiation on spine . April 2010- Still on Adriamycin 3wks on 1 wk off and zometa every 28 days. PET -May 2010 showed progression. Starting Herceptin/Navelbine on June '10
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10-23-2008, 09:31 AM
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#39
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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I am adding my prayers and thoughts to everyone else's. Yup, take a few days to cry and scream and then on with the next round of fighting. There are more combos out there for you.
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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10-23-2008, 10:30 AM
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#40
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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oh Joy, I wish I had advice. There's so many drugs out there, I hope they find a combo that works well for you. Wasn't Iressa a drug for lungs? possibly it's an old drug that's been replaced.
kick their asses to get you a drug that works!
Big hug and love
sarah
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