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11-08-2012, 10:45 AM
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#1
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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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.
-
__________________
Pam
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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11-08-2012, 07:06 PM
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#2
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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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
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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11-08-2012, 11:09 PM
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#3
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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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.
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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11-08-2012, 11:33 PM
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#4
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Senior Member
Join Date: Feb 2007
Location: Cordoba, Mexico
Posts: 672
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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.
__________________
Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
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11-09-2012, 08:44 PM
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#5
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Senior Member
Join Date: Mar 2009
Posts: 508
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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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11-10-2012, 01:58 PM
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#6
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Senior Member
Join Date: May 2006
Posts: 3,142
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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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11-10-2012, 06:03 PM
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#7
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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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
__________________
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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11-10-2012, 07:18 PM
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#8
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Senior Member
Join Date: Sep 2012
Posts: 29
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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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11-12-2012, 06:56 PM
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#9
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Senior Member
Join Date: Jan 2009
Location: Colorado Springs, CO
Posts: 430
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Re: ixempra is next chemo
Just wanted you to know I'm thinking of you and sending you hugs.
__________________
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!
3/07/18 - Still NED
9/10/23 - Still NED
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11-12-2012, 07:03 PM
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#10
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: ixempra is next chemo
I am thinking about you too
__________________
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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11-13-2012, 07:46 AM
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#11
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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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.
__________________
Pam
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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11-13-2012, 08:41 AM
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#12
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Senior Member
Join Date: Oct 2005
Posts: 215
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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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11-13-2012, 09:21 AM
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#13
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Senior Member
Join Date: Jul 2008
Posts: 186
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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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11-21-2012, 07:47 PM
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#14
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: ixempra is next chemo
Go for it, Pam. Remember, it is the "squeaky wheel that gets the oil."
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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11-21-2012, 09:04 PM
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#15
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Senior Member
Join Date: Dec 2011
Posts: 585
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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.
__________________
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
Clear/NED
April 2015 remain NED
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11-22-2012, 03:24 AM
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#16
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Senior Member
Join Date: Feb 2007
Location: Paris, France
Posts: 858
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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
__________________
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex
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
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
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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11-25-2012, 11:38 PM
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#17
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Senior Member
Join Date: Dec 2006
Location: Oregon
Posts: 715
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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
__________________
Catherine
Found my own lump in the shower
April 2006 at the age of 58
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
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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11-26-2012, 01:23 AM
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#18
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,809
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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/
__________________
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; 11-26-2012 at 01:50 AM..
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11-30-2012, 08:15 PM
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#19
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Senior Member
Join Date: Oct 2008
Posts: 88
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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
__________________
------------------------------
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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11-30-2012, 08:29 PM
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#20
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Senior Member
Join Date: Jun 2009
Posts: 343
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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.
__________________
Vicky
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
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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