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Old 04-15-2009, 01:40 PM   #1
Sheila
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Progression & Toxic on Taxol, dont know whats next

Guess #60 was my magic number because when I went for my onc. visit yesterday, I learned that I am progressing on the Taxol, and showing signs of Toxicity...the shortness of breath after each treatment has gotten progressively worse, and my feet are making walking a chore from the neuropathy...then, the fact that my neck nodes have doubled in the past month...not good. So received my Herceptin, and am scheduled for all scans yet again before a new treatment plan is decided. Oh, and a visit to the throat Dr, due to continued hoarseness left over from when I had pneumonia...I went from having the sultry voice of a phone sex operator to the voice fo a person sucking on helium balloons!

I do feel let down, feel like I have lost my hair 3 times for nothing in the past 2 years, but then i think hey, I did get almost 2 years out of this drug! The Dr is hoping I can get into the T DM-1 phase III trial that will be starting, but I read previous Xeloda use will probably get me the boot!. I just keep telling myself when one door shuts, or slams in my face, another will open...

Guess I am overly emotional at this latest news, still coping with my Mom having a major stroke last week which has limited her speech and movement....I keep asking..Just How big of shoulders does the guy upstairs think we have anyway????

Tomorrow is a new day, and I have to refrain from thinking that things are growing while I wait for the after effects of the last chemo to leave my body so I can gain some strength, and a new plan can begin. Keep me in your prayers...I need your strength right now.
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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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Old 04-15-2009, 02:08 PM   #2
Rich66
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Sorry to hear this. On the positive side, the long run on Taxol seems to leave a number of options to try. Some which might be better tolerated, too.
Has adding Tykerb to the Herceptin come up? Navelbine? Gemzar?
Can a biopsy be had for any of the mets? Maybe they are ER+.
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Old 04-15-2009, 02:18 PM   #3
Jean
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Sheila,
I too am downhearted to read your post. You have been fighting the battle long and hard. I guess the big guy knows you do have the largest shoulders. But after all enough is enough....I am sorry to hear about your Mom.

I am keeping you in my very special prayers and will continue to do so...I am hoping the trial will open up for you as we are hearing so many positive results with the sisters who are in the trial.

I wish I could do more for you Sheila....you have always been such a model for me. I feel frustrated, please know I am reaching out to you and sending you a huge strong healing hug filled with loving energy.

Love your new photo with your beautiful family!
Best Personal Regards,
jean
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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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Old 04-15-2009, 02:18 PM   #4
Ellie F
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Hi Sheila so sorry to hear you are having such a bad time. I am due to start a taxane with herceptin for a contra-lateral axillary lymph node recurrence.Please don't loose hope you have stayed on top of this thing for years and will beat it! I will pray that your new treatment is effective and cause you less side effects than the taxol.Hugs from across the pond. Ellie
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Old 04-15-2009, 02:24 PM   #5
Mary Anne in TX
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Rats!

Just rats! That makes me so mad. And yet I'm surely glad that Taxol gave you 2 years of work. You know, Sheila, I did herceptin and navelbine after taxol and herceptin and carboplatin and it was with the time that I was doing navelbine and herceptin that my tumor markers began to go down more. I still believe that it took every single dose of all that "poison" to get me to this point. You know I don't know anything about anything, but I do believe it was all those combinations together that has me here.
I'm sending loads of love and good thoughts to you. I think your shoulders are mighty huge, but I wish they could get a BIG REST!
Lots of love, ma
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MA in TX.
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 04-15-2009, 02:29 PM   #6
Barbara H.
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Hi Shiela,
I really hope you can get on the T-DM trial. You will find it so much easier than Taxol. The first dose is a little difficult. After that, I have not found it much more difficult than taking Herceptin alone. I've been on it since Sept. 07.
Best wishes,
Barbara H.
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Old 04-15-2009, 03:26 PM   #7
jordan
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Sheila,
I am sorry to read your post. First of all I'm sorry to hear of your mother's stroke. I hope she will regain strength and function.
You got 2 yrs out of taxol. That was good. But it sounds like with the neuropathy etc it was getting harder to tolerate too. It's a scary time when one med stops working and we have to change to a new treatment. Will it work? How will I feel on it, etc. How long will it work? Taxol only worked 8 months for me. I was on taxol & avastin. I dont know which drug caused what se exactly, but now that I'm on gemzar & herceptin (since Feb) I feel much better. You've got lots of yet unused chemo options - that's always a good thing. I'll be waiting to hear about your scans & next treatment decision. I didn't know dm1 was starting a phase III trial - that's exciting. I've been hoping to get on that too eventually, but if xeloda is a deal breaker that counts me out too - for now. You are always such a support & inspiration to me. Know that I am thinking about you as you wait now for decision on the next treatment plan.
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Old 04-15-2009, 03:28 PM   #8
jordan
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I'm not "Jordan" I'm Pam_P. I had trouble logging in & I don't know how this got mixed up. Jordan was a user name I tried briefly a long time ago. I may have to ask Joe to help me get Pam back as my user name.
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Old 04-15-2009, 03:37 PM   #9
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Dear Sheila,
You are always in my prayers. You are so dear to me.

Hugs,
Gemma
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My love to you all
Gemma
____________________________________
Dx July03 at 35
Rt,breast lump.,1 node+
ER+(98%)ER-, grade3
A/C 4rounds,Rad for 38 days
Tamoxifen 2004-05
Recurrence Feb.2006, radi double mastectomy canceled bec. of mets, StageIV lungs mets
Her2+++, BRCA negative
Taxol/Herceptin six rounds of Taxol from April06.then Herceptin alone til May07. Started Tykerb/Xeloda in Jun07-Sept.07 bec of progression of the lympnodes. Navalbine/Herceptin Sept.07 to April 08 due to progression . Gemzar/Hercptin Apr08.June08 Brain MRI showed Brain Mets.CraniectomyAug.1,08, tumor removed completely
completed 20 wbrt!
Started Doxil 10/31/08 (monthly) and weekly Herceptin
Ixempra on 2/13/09
due to multiple hepatic mets
will have Herceptin as well.
Radical rt.breast Mastectomy June2009.
Ixempra/Herceptin 11/06/09--increasing right axillary lymphanenopathy and enlarging left upper lobe nodule :-(
Taxotere/Herceptin 3/5/10,more liver mets, lungs, lymphnodes. 2 weeks on, one week off...
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Old 04-15-2009, 03:44 PM   #10
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oh, it's Pam P... ( not Jordan, or Pam_P) I finally figured out my mistake in signing in. That's what I get for being absent for awhile.
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6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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Old 04-15-2009, 04:24 PM   #11
Faith in Him
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Shelia,

I am sorry that you have had progression.That is never nice to hear but I believe that your onc will find just the right treatment for you. Does Xeloda exclude you from the trial? I thought others on the trial had been on Xeloda. It is worth checking into.

Tonya
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DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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Old 04-15-2009, 04:35 PM   #12
WomanofSteel
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Sheila, sorry to hear about your progression and that you have now become the toxic avenger. You indeed should be thankful taxol gave you 2 years, it didn't treat me that kindly. Hang in there honey. I know it's been a long hard road, but we both know there are easy times between. Sorry to hear about your mom, I know first hand that parent issues can wear on you more than the treatment itself. You will be fine dear and we are all here with prayer, love and support.
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dx aug 03
invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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Old 04-15-2009, 05:33 PM   #13
Becky
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Oh Sheila, I'm so upset that you are still burdened with the nasty nodes. What a stubborn spot. Your onc has really been able to stay with something and get a long lasting effect with it.

I am sure she will come up with something new that will knock those mets back. Since you haven't been heavily pretreated, you have a lot of opinions left. I just wish everything would just go away and not come back.

Love, Becky
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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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Old 04-15-2009, 05:43 PM   #14
'lizbeth
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Sheila,

You are in my thoughts & prayers. I am hoping that you end up on a better treatment with less toxicity.
__________________
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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Old 04-15-2009, 05:52 PM   #15
Jackie07
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Sheila,

You look great in that picture with the kiddos. 'Courage is when you have someone or something that you love that...' - and you have so many loving friends and families.

Like the others have said, your doctors are going to figure out the next steps. I am sending positive thoughts from Texas...
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

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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
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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.
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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

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Old 04-15-2009, 05:53 PM   #16
Mary Jo
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Hi Sheila....

Sending love and prayers. I'm so sorry you had to hear this news. Know I care....

Mary Jo
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Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

<>< Romans 8:28
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Old 04-15-2009, 06:07 PM   #17
sassy
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Sheila,

Take and deep breath--we're all taking one with you--and getready for the next round that will once again put you into remission. Two years at a time works---it gives you two more years with those lovely children who I know love grandma to distraction.

I am keeping you in my thoughts and prayers.
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Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14YEARS NED!

Last edited by sassy; 04-17-2009 at 06:18 AM..
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Old 04-15-2009, 08:18 PM   #18
lexigirl
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Dear Sheila,

Thinking of you and praying for your doc to find the tx to knock down those darned nodes.

I am sorry that your mom isn't doing too well. I hope that she will recover her speech and mobility.

Rest and lean on us. You need your physical strength and your emotional strength now so you can fight this ca off. His shoulders are big enough to handle this. We are here too.

You are an inspiration to me Sheila and I know that we will have you here for many years ahead.

Hugs,
Lexi
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Old 04-15-2009, 08:36 PM   #19
vickie h
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Dearest Sheila,
I am so sorry to hear about your Mom and the progression. Rats! The good news is that you have so many more options to choose from. Navelbine has been a life saver for so many (and you ger to keep your hair or most of it). The DM1 trials would be great if you can qualify. I, too, was on Xeloda and had progression...so that is out for me.
Give your mom a hug for me and remember we all love you very much. You are such an inspiration to all who come here.
Sending you lots of love and hugs tonight,
Vickie
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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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Old 04-15-2009, 09:39 PM   #20
ElaineM
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Wink Progression & Toxic on Taxol, dont know whats next

I am so sorry to hear your news. You have a right to be down.
If you are estrogen positive you may want to ask your doc about an aromatase inhibitor like Femara with the Herceptin or add Tykerb to Herceptin and Femara.
How about a trial? There must be something you are eligible for.
I hope your Mother feels better soon too.
Hang in there and keep putting one foot in front of the other.
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Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
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14 Year Survivor
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