 |
06-29-2010, 03:51 PM
|
#1
|
|
Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
|
Chemo questions
I posted this on the IBC forum but didn't get any responses, so I'll try here.
My onc wants to put me back on Xeloda even though I have no signs of the IBC rash, no symptoms, and my last scan was clear. His thoughts are I am young and why change what was working. I had a chemo break for surgery.
I am due for another scan but even if that is clear; he wants me on chemo.
I don't understand why I can't just stay on Tykerb. Hate the thought of being back on chemo.
Any thoughts?
__________________
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
|
|
|
|
06-29-2010, 06:18 PM
|
#2
|
|
Senior Member
Join Date: Aug 2008
Location: Virginia Beach, Virginia
Posts: 145
|
Re: Chemo questions
Maybe you could ask about going with Tykerb and Herceptin instead? I have heard that this combo works well in the IBC setting. It would give the cancer a double whammy and give you a chemo break.
Just a thought. Hope it works out for you!!!
Darlene
__________________
12/14/07 IDC ER- PR- HER2+++ LIVER METS AT DX CONFIRMED BY LIVER BIOPSY
01/14/08 2 AC TREATMENTS-NOT WORKING
02/04/08 13 TAXOL, CARBO, HERCEPTIN TREATMENT-EXCELLENT RESULTS!
05/12/08 HERCEPTIN EVERY 3 WKS
08/22/08 BRAIN METS! 8 <5MM
09/17/08 CYBERKNIFED BRAIN METS
10/20/08 BRAIN METS SHRINKING
12/29/08 BRAIN SCAN SHOWS 1 LESION GONE, 7 SHRINKING & STABLE, 1MM ? SPOT
01/16/09 LIVER REOCUR-XELODA/HERCEPTIN
03/02/09 BRAIN SCAN 2 LESIONS GONE, 5 STABLE, 1MM ? SPOT STILL A ?
3/27/09 REGRESSION OF 2 LIVER LESIONS XELODA & HERCEPTIN
06/08/09 STUPID BRAIN HAS 3 LESIONS
06/29/09 CYBERKNIFE
07/01/09 LIVER REGRESSION NO NEW METS
07/07/09 TYKERB XELODA HERCEPTIN
11/11/09 GEMZAR/HERCEPTIN FOR LIVER PROGRESSION
03/22/10 BRAIN MRI GOOD-3 SMALL NECROSIS LEFT FROM ORIG 11!!
03/26/10 CHANGE TO NAVELBINE/HERCEPTIN 3 LIVER LESIONS PROGRESSING IN SIZE
05/21/10 NAVELBINE/HERCEPTIN WORKING!
07/19/10 GOOD BRAIN MRI
08/20/10 LIVER PROGRESSION
09/08/10 TDM1 - NASHVILLE TN
01/10/11 LIVER RESPONDING TO TDM1
|
|
|
|
|
06-30-2010, 04:01 PM
|
#3
|
|
Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
|
Re: Chemo questions
I'd have the same feelings with a clear scan too!
Maybe tykerb alone or with herceptin would help?
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
|
|
|
|
|
07-15-2010, 01:34 AM
|
#4
|
|
Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
|
Re: Chemo questions
Tonya,
Have you and your oncologist reached a consensus?
It looked to me that he's just trying to get you to resume what you were on before the tram/flap. But once you've enjoyed the chemo 'holiday', you don't want to go back to the harsh stuff.
How are you feeling right now? It probably will take a while to recover from the surgery. Take it easy now and let us know how it goes.
__________________
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
|
|
|
|
|
07-15-2010, 05:21 AM
|
#5
|
|
Senior Member
Join Date: Jun 2009
Location: Hunterdon Cty, New Jersey
Posts: 51
|
Re: Chemo questions
Hi Tonya,
I would be hesitant to go back on Xeloda unless there was an obvious reason to do it. I would question your onc more. Does he have a strong belief that the cancer is not gone. Xeloda as a preventive sounds harsh to me. If it were me, I'd be very hesitant. I'm sort of in the same situation as you and my MSKCC onc has not suggested such a harsh drug as a preventive measure. Keep us posted. Leslie
__________________
2009
3-15 Age 48 -found lump
Dx 4/15/09: IBC Stage III w/extensive lymph node involvement HER2+++
5/1/09: Adria/Cytoxan for x 3-no response
6/12/09: Taxol/Herceptin for 1 tx -no response
6/24/09: added Carboplatin to T/H x 3 - no response
7/09 -added F5U -no response
7/29/09: Herceptin/Xeloda/Tykerb no response
8-18-09: 2nd opinion at MDA - IDC not IBC! First Onc disagrees,
BRCA 1/2 Neg
8-19-09: continue on Herceptin/Xeloda/Tykerb-slight response
9-24-09 MRM right breast 10x10 cm tumor! (Huge!) no necrosis - Got clear margins! A miracle!
13 of 18 nodes positive
11-2-09 -12/10 started radiation
12-10-2009 - Finished with radiation!!
2010
1/13/2010-Back on Xeloda x six cycles (have been on Tykerb/Herceptin all along)
4/4/14 - stopped Xeloda/Tykerb one cycle early. Liver enzymes high!
4/20/2010 Clear PET Scan!! NED
6/10/2010 - Finished Herceptin11/8 - Brain METS! CRAP! WBRT only option given. Four mets, separate locations in brain, no SRS
12/10 - Herceptin/Tykerb/Xeloda
|
|
|
|
|
07-15-2010, 05:49 AM
|
#6
|
|
Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
|
Re: Chemo questions
I like Darlene's suggestion of adding herceptin to the tykerb and I' d ask the onc about that. Like Jackie said, perhaps your onc. is trying to get you back to the same treatment as before your surgery. If so I'd ask how long he would keep you on xeloda/tykerb with clear scan? How do you tolerate the xeloda? If your scan is clear and resume xeloda could you go with a lower dose?
__________________
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
|
|
|
|
|
07-15-2010, 02:26 PM
|
#7
|
|
Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
|
Re: Chemo questions
Faith, I agree with the others that Tykerb/Herceptin would be a good combo to try.
You might also want to think about getting a 2nd or even 3rd opinion on your situation...I find that always helps. These decisions are never easy ones. Keep us updated.
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.
|
|
|
|
|
07-15-2010, 04:31 PM
|
#8
|
|
Senior Member
Join Date: May 2006
Posts: 3,142
|
Re: Chemo questions
I would get a second opinion. Meanwhile I think Tykerb and Herceptin might be a good idea. Good luck.
|
|
|
|
|
07-15-2010, 06:39 PM
|
#9
|
|
Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
|
Re: Chemo questions
Hi y'all,
I think I'll bring up the Tykerb/herceptin combo when I met with Dr. Onc on Friday. I will also see my second opinion Onc at UCSF soon.
I have a CT scan next Friday the 23rd. Praying for NED. Here we go again with the worry, anxiety and grumpiness. My poor husband! 
__________________
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
|
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 05:57 AM.
|
Linear Mode
