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Old 11-08-2012, 10:45 AM   #1
Pam P
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ixempra is next chemo

I switched to xeloda in September (3rd time on it for me). i appears to not be working. My ca2729 has risen continually since I've been on it. I have PET scan and see the oncologist the week after Thanksgiving. If PET confirms progression ixempra will be next. I think it's the only chemo left I have not been on. I know people here have been on it. I hear it's a tough one. Can some with experience with it tell me your experiences with it?

i'm eagerly waiting for FDA to approve TDM-1,

I'm getting more scared that the cancer now is in more places and not being controlled. I know you know that fear.
-
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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 11-08-2012, 07:06 PM   #2
NEDenise
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Re: ixempra is next chemo

Pam,
No knowledge of ixempra here. But I wanted to send my love...and a prayer that TDM-1 is approved just in time for you to need it!
Denise
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Old 11-08-2012, 11:09 PM   #3
Pray
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Re: ixempra is next chemo

Pam, I am so sorry. I am hoping and praying very hard that you get access to tdm1. Gods blessing to you sweet woman. Peace my friend.
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Old 11-08-2012, 11:33 PM   #4
Paty
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Re: ixempra is next chemo

Pam,

Thinking of you. Sending my love and hope the new drug will work for you.
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Lumpectomy rt breast
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Old 11-09-2012, 08:44 PM   #5
ammebarb
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Re: ixempra is next chemo

Hello Pam. Hope the new drug is easier to take than you've heard and that it does good things for you. Also holding hope that TDM1 is soon available for you.

Barb A.
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Old 11-10-2012, 01:58 PM   #6
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Wink Re: ixempra is next chemo

I don't know anything about Xempra, but my good wishes and prayers go with you as you start this journey.
Have you considered tumor profiling to see which drug will give you the best response?
I was just chatting with the senior oncologist in my doctor's office yesterday. He thinks there will be an announcemnt about T DM1 at San Antonio the beginning of December and that it will be fast tracked through the FDA shortly after that. Hang in there Pam !!
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Old 11-10-2012, 06:03 PM   #7
Mary Anne in TX
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Re: ixempra is next chemo

Hi Pam!
I'm praying for you and thinking good healthy thoughts for you. Hope this is the kick cancer's butt ticket you need for now. Peace and love to you, ma
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vascular invasion
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Old 11-10-2012, 07:18 PM   #8
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Re: ixempra is next chemo

I think most of us understand your fear that we may run out of chemo drugs that work for us. I know I've wondered that. I've gone through several and have just started my journey on Xeloda and Tykerb. Right now it is working, but the question is always lurking, "what happens when there isn't anything let to try?" You are in my prayers and I hope this next one works for you until something better comes along. Keep the faith.
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Old 11-12-2012, 06:56 PM   #9
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Re: ixempra is next chemo

Just wanted you to know I'm thinking of you and sending you hugs.
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9/15/08 (age 52) - Mammo: calcifications
9/22/08 - Biopsy: DCIS, grade 3. ER,PR status: Pos. in 75-90% of tumor cells.
10/01/08 - Ob/Gyn appt.: found complex, mostly cystic mass on right ovary - 11cmx12cmx 8cm
10/15/08 - Hysterectomy & Oophorectomy, Lumpectomy: Cyst on uterus, not ovary - all was benign. Breast - 5 of 6 bad margins. 2 Sentinel Lymph nodes removed, both negative. Stage 0, Tis, N0
12/11/08 - Mastectomy & DIEP reconstruction: Surprise! 2 cm Invasive DC, grade 2 found. One benign internal mammary lymph node. Stage 1, T1c, N0, all clean margins. ER+ (Proportion Score = 2/5, Intensity Score = 2/3) and PR+(Proportion Score = 3/5, Intensity Score = 2/3)
HER2 score = 3+
1/09/09 - Oncotype DX: Recurrence S/core of 60 !?!?! ER status is NEG!! PR staus is NEG! HER2 score = 12.2 (still positive, greater than 11.5 is positive).
1/20/09 - Started chemo: TCH
5/26/09 - FINISHED CHEMO!
1/05/10 - FINISHED HERCEPTIN!
1/22/10 - Port-a-catheter removed!
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Old 11-12-2012, 07:03 PM   #10
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Re: ixempra is next chemo

I am thinking about you too
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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
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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 11-13-2012, 07:46 AM   #11
Pam P
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Re: ixempra is next chemo

I may be overly afraid of ixempra. It's just that i've heard the side effects are terrible and I am so vulnerable as it is. I just know it will bring me down to a very weak state. Also from what I've read the success rate of the drug isn't that great.

I know that if this is what I have to do I need to get this negativity out of my mind so I can be positive about tolerance of the drug and the hope that it's helping. I will try to meditate on that I;m just not there yet.

This is the last of the chemos that I have not taken. And if/when this doesn't work I'm at the end. Then I could die waiting for tdm-1 to finally be available. How ironic if i died only days/ weeks before the FDa approval. My onc. has said as soon as tdm-1 is available we're going to jump on it.

I did call Genetech yesterday about compassionate use. They were not willing to discuss with me only said it had to be doctor driven. I called my onc's nurse and explained to her what I wanted. She said she would send it on to the onc. We'll see if he does any pleading my case to them.
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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 11-13-2012, 08:41 AM   #12
Jeanette
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Red face Re: ixempra is next chemo

Oh Pam, I feel so bad for you. You have been thru so much, doesn't seem fair does it? Think positive thoughts my dear, we are all pulling for you. It's all this bloody waiting for things to happen that gets me. We all struggle with our fears, but I have put myself in God's hand and hopefully we will get thru this thing together. Blessings my friend, Jeanette
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Old 11-13-2012, 09:21 AM   #13
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Re: ixempra is next chemo

Pam, let's not wait and see if Onc is willing to plead your case to Genentech for compassionate T-DM1 use. If approved drugs no longer are working for you, Onc's oath to help patient should get him/her to try get you placed into Genentech's special trial.

Purpose of trial is to:
http://www.fda.gov/ForConsumers/ByAu...gs/default.htm

Sites partaking, eligibility criteria and further specifics:
http://www.clinicaltrials.gov/ct2/sh...=t-dm1&rank=11
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Old 11-21-2012, 07:47 PM   #14
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Re: ixempra is next chemo

Go for it, Pam. Remember, it is the "squeaky wheel that gets the oil."
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Old 11-21-2012, 09:04 PM   #15
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Re: ixempra is next chemo

Im so sorry, Pam. I will pray that TDM-1 gets approved fast. When I read your signature line Im just amazed at how many therapies you have been on. You are such a strong woman..I don't know anything about the drug you are embarking on, but I pray that the side effects stay minimal and that it kicks cancer butt. Bunches of hugs to you.
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Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
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Old 11-22-2012, 03:24 AM   #16
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Re: ixempra is next chemo

Dear Pam, I hope Ixempra will work but I also hope your onc will fight like a dog for you to get you TDM1. You deserve it and we are so close to announcement. Hugs. Michka
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12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
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04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
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08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 11-25-2012, 11:38 PM   #17
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Re: ixempra is next chemo

Hi Pam, I think I read in one of your posts that you will see your oncologist the week after Thanksgiving. Just want to send my love and support to you. Thinking of you and praying for good meds!

Catherine
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Found my own lump in the shower
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Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
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Old 11-26-2012, 01:23 AM   #18
Jackie07
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Re: ixempra is next chemo

Pam,

Jessica (jml) was on ixempra in 2010 and had a partial response, according to her signature/treatment history; aother member who's had experience on ixempra is 11yr5xsr5r (Also just saw this line in the signature of radiant: Dec 2010 - present - Ixempra/Avastin/Herceptin/Fasoldex - regressing)


I hope they(and others) will see this thread and chime in. You might also want to contact them directly via e-mail or private message.

Holding you in my prayers. Praying hard that this drug will give you some more time before T-DM1 becomes available to you.

ps. Livestrong has a link listing the side effects of ixempra (ixabepilone): http://www.livestrong.com/article/12...-side-effects/
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Old 11-30-2012, 08:15 PM   #19
radiant
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Re: ixempra is next chemo

Hi Pam -

Do u know if u need to go on Ixempra? I was on it for 1.5 years - it did not
fail me. However, I've yet to meet someone besides me that went that long on it. If needed I could go back. Actually I am on tdm1 and that has not been an easy drug for me at all.

Plz PM me if you go on Ixempra - I can tell u what I did to get through it and what side effects u have to be mindful of starting day 1. I learned that lesson the hard way!

Back to you,

Kim
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------------------------------
Dx Stage 3C 2005, triple +, tons of lymph nodes as well. FEC, surgery, TCH, rads, herceptin 1 year. And, Aromasin.
2007 - recurrence to medistinal lymph node, Abraxene and Herceptin - took it down 50%
2008 - on Arimidex/Herceptin - stable lymph node.
2009 - stable on Arimidex/Herceptin
2010 - lymph node progression and liver mets.
2010 - went on Gemzar, Navelbine, Herceptin - Navelbine and Herceptin took liver mets down. lymph node slightly progressed.
2010 - did Xeloda & Tykerb - MAJOR progression in liver in only 6 weeks.
Dec 2010 - present - Ixempra/Avastin/Herceptin/Fasoldex - regressing
June 2012 - chemo break
Sept 19, 2012 - start t-dm1. Chose this over going back on Ixempra.
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Old 11-30-2012, 08:29 PM   #20
vlcarr
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Re: ixempra is next chemo

I saw my oncologist this week for 6 month visit & she said tdm1 in March is what they think. I'm not in your boat Pam but do try & read about new developments so I asked her about it. Of course, I'm only repeating what she told me & I'm sure that seems like forever to those who need it now. Pam, you were so kind to me when I first got here. Sending hugs & hope. Not sure what others have heard as far as when but wanted to share what she told me.
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Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
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