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09-13-2009, 10:04 AM
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#1
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Started TDM1 Friday Sept. 4th
For those of you keeping up with me you should know that I imagine that your strong hopes and prayers really pulled me through. As you may remember I had travelled to Detroit the previous week to get TDM1 only to end up hospitalized for the weekend. Well, I returned home on Sunday night and had the liver bial duct stent replaced on Tuesday. My enzymes had already begun to fall back into normal range but we thought it was a good time to get the stent changed anyway. On Thursday at 4PM I got the go-ahead to get on the 7PM flight to Detroit in order to get TDM1 on Friday.
I did not take any of my normal Valium pre-meds because I didn’t want to mess with my liver counts. So I was extremely anxious when I started medication. I was almost finished with the TDM1 infusion and I had an allergic reaction that required Benadryl. I also got a fever that required Aleve and Tylenol. Once things were on the right track again we completed the infusion.
There was another lady getting her first treatment at the same time and she breezed right through it.
The first week was tough for me. I had a fever near the end of each Aleve period of about 102 and constant nausea. I was able to work on Wednesday and Thursday. I traveled back to Detroit Thursday night for Friday tests and my heart monitoring and blood work were all good. I hope that this treatment is working and that it gets easier to handle. I know that most everyone else found this to be an extremely easy treatment… I hope that I get there.
Thanks for all of your strong well wishes and support in helping to sustain me while I worked so hard to get into this trial. It has been a very rough go but we did it!
Love, Hope, Peace, Carolyn
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09-13-2009, 11:09 AM
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#2
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: Started TDM1 Friday Sept. 4th
Hi Carolyn
Sorry the first time was so rough on you. I had a high (for me) fever the first time and also had a bout of acute pain in my liver (that's where my mets were) a few days later.
Since then, I havn't experienced THAT, but do still get flu like symptoms. They are not as severe as the first infusion tho. So for me it became much easier to handle as time went on. Not quite the walk in the park as plain Herceptin but then again, it has been much tougher on the canser, too!
Hope you're feeling better and that the DM1 is kicking canser's butt harder than yours...
Chris
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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09-13-2009, 04:25 PM
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#3
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Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
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Re: Started TDM1 Friday Sept. 4th
Carolyn,
You are one, tough lady....just the kind of person who provides so much inspiration to us all on this site.
It sounds as if life should be getting a little easier as you settle into the routine of kicking this cancer out of your life for good!!
I am so happy that it ultimately worked out for you to get this drug. I am hoping it works miracles for you.
Thinking of you and axiously awaiting posts of good news!!
Lori
__________________
2007
Oct - Diagnosed - Stage IV 5 c.m. IDC - Left Side er/pr- Her2+++ Node + 2/14 - Single Liver Met Double Mastectomy Nov - Begin T+H 2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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09-13-2009, 05:14 PM
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#4
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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Re: Started TDM1 Friday Sept. 4th
You go girl, I am praying for you and that this
will get easier for you each day.
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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09-13-2009, 05:36 PM
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#5
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Started TDM1 Friday Sept. 4th
Carolyn
I just want to chime in my support and that I am thinking about you.
__________________
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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09-13-2009, 05:37 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: Started TDM1 Friday Sept. 4th
You had a rocky start but hopefully each round will get easier. Keep letting us know how it's going for you. I'm hoping for great & long lasting results for you.
__________________
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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09-14-2009, 01:45 AM
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#7
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: Started TDM1 Friday Sept. 4th
Carolyn,
You're a real warrior.
Hugs,
Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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09-14-2009, 07:56 AM
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#8
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Re: Started TDM1 Friday Sept. 4th
I am sorry that you had some nasty se's from your first infusion. I am hopeful that the next tx will be easier on you. I am happy and relieved that you have begun and look forward to hearing how you are doing.
Hugs,
Lexi
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09-14-2009, 12:18 PM
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#9
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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Re: Started TDM1 Friday Sept. 4th
Carolyn - just wanted to mention to you that I also had fevers after my treatments. We never really understood why but I guess now knowing others did too, it's part of the drug. Wonderful drug and does work miracles. I can not wait until it is approved for everyone.
I just hate to see you do all of this traveling. I know we spoke of this before but is there anyway you can get something closer to you,unless you do not mind the trips. I had so many appts each week just checking blood and seeing the onc, that all of the traveling would tire me out.
In any event , I am glad you got started and wish you much luck. Keep us posted
__________________
Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial
"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."
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09-14-2009, 02:21 PM
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#10
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Senior Member
Join Date: Aug 2008
Location: San Francisco
Posts: 260
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Re: Started TDM1 Friday Sept. 4th
Go Carolyn! Wanted to let you know I am pulling for you and hope that the TMD1 will be the miracle we need it to be. Keep up posted on your progress (or regress should I say!) as we are all pulling for you. You are an incredibly strong lady whom I admire very much. Much love to you,
Courtney
(CourtneyinSF on the Mets site)
__________________
4/17/08: Dx Stage IV at age 30 - extensive mets to liver, lungs, and bones. Er/Pr-, Her2+++
April 08-Aug 08:Taxotere, Cytoxan, Herceptin, Zometa - complete response!
Sept 08-Dec 08: Herceptin +Zometa for maintenance.
Jan 09-April 09: Brain mets. Add Tykerb. Watch and wait.
April 09: Gamma Knife 10 brain mets, add Xeloda.
Sept 09: Gamma Knife to 1 brain met.
Nov 09- April 10: Lung progression, add Gemzar to Herceptin, Zometa.
May 10- Sept 10: HER2 Vaccine Trial
Sept 10: Add Tykerb for more brain mets.
Oct 10: Gamma Knife to 7 brain mets.
Dec 10: Switch from Zometa to Denosumab.
Jan 11: Gamma Knife to 3 brain mets.
March 11: Gemzar/Herceptin for lung/bone progression.
April 11: More brain mets - Intrathecal Herceptin
June 11: Ixempra/Herceptin for lung, soft tissue progression.
Aug 11: Gamma Knife
Sep 11: Abraxane/Herceptin
Future: NED
Send me a PM if you'd like to follow my journey on Caringbridge.
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