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Old 07-16-2013, 09:34 AM   #1
Ceesun
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Kadcyla is kicking my butt on my Bday! Ouch!

Greetings Friends, Well today is a milestone bday for me the big 60 and I hurt all over...yikes! I had my 2nd infusion last Thursday and since Friday....migraine headache, no body strength, achy muscles, fatigue, chills....and the dark circles around my eyes are darker! This TDM1 is tough! I thought the treatments got easier, but I feel worse this time. I seriously think I may ask if they can dial down the dose a bit...My hubby's bday is in a week so I guess we will celebrate a bit then. Sorry for the pity party, but I hurt...oh well, I was diagnosed at 50 and made it to 60 and will have a new grandchild next month. Thanks for listening, friends...Ceesun
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Old 07-16-2013, 11:50 AM   #2
tricia keegan
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Re: Kadcyla is kicking my butt on my Bday! Ouch!

Sorry to hear you feel so rough Cathy and especially on your birthday too, be kind to yourself today and look forward to that double celebration with your hubby next week!
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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!
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Old 07-16-2013, 11:58 AM   #3
CarolineC
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Re: Kadcyla is kicking my butt on my Bday! Ouch!

Ceesun,

How about a soak in the bathtub to soothe the achiness? I'm so sorry you feel so badly on your birthday, but I am glad you're here to have one, and soon will be able to reap the benefits of TDM1. That's a good idea to discuss abit of a dose reduction. It's hard when you don't feel well and can't have a good time-I hope you have some relief soon.
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Dx Age 47 July/09 Stage 2B/3
Left Mast. Aug 09- 1 of 3 positive nodes in axillary dissection (yes only 3)
ER+ 90%, PR+ 20%, HER2+++
4 x AC, 4 x Paclitaxol and H (Neupogen for 7 cycles), Herceptin complete Nov 10
Mar–Apr 2010 25 Rads
Apr 10-Oct 11- Tamoxifen
Oct 11 – 3 cm met to sternum
Oct 11-Letrozole for 3 mths, start Clasteon-bone remodeller
Nov-Dec 11 - Happy 50th Birthday -20 rads to sternum
Jan-April 2012 Taxotere/Herceptin-6 cycles (Neupogen for 5)
Herceptin every 3 weeks-Letrozole added Nov 2012
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Old 07-16-2013, 12:13 PM   #4
Vicky
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Re: Kadcyla is kicking my butt on my Bday! Ouch!

Ceesun,

so sorry to hear you are feeling so miserable on your birthday! I am in awe of the fact you have been battling this for 10 years- that so encourages me today. It also happens to be my birthday- I am 46 today and pray I too can make it to see a grandchild in my future. I have also done TDM1 and felt that my body adjusted better after the first few rounds- so just keep hanging in there. Know I am thinking of you today and wishing you were feeling better- but so glad to read your encouragement today. Happy Birthday!
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3-16-11 dx IDC 4.4 cm tumor, right breast,HER-2 neu 3+++, Stage III
3-25-11 PET scan shows 3 mets to liver and 1 to spine, Stage IV
4-12-11 start clinical trial of TDM1 infusion 1x every 3 weeks.
6-14-11 CT scan after 3 cycles shows NO liver spots, reduced spinal met from 18mm to 13mm and right breast mass from 4.4 to 4.2 cm.
8-12-11 Mastectomy rt. breast.
10-11 scans reflect stable cancer
12-11 MRI reveals area of concern in brain, CT scan reveals 3mm spot on lung. Watch and wait and rescan in a few weeks. Round 13 TDM1 complete.
2-21-12 Scans reveal progression in lungs with 4 new small mets. Officially off tdm1. Start halaven and radiation for single brain met, 1 spot in spine.
3-13 stereotactic radiosurgery for single brain met.
5-31-12 Halaven stopped due to low blood counts. Start tamoxifen and cont. Herceptin 1x3 weeks.
7-11-12- brain mri shows shrinking brain met and no new lesions. Cont. Herceptin and Tamoxifen
10-2-12 Stable tumor markers. Continue Herceptin and Tamoxifen
4-9-13 progression in lymph node under arm and new lung spots. Stop Tamoxifen. Add Xeloda to Herceptin.
6-10-13 Stereotactic radiosurgery to two new brain mets. Stop Xeloda due to lung mets progression. begin Tykerb 7-2-13.
10-29-13 Begin radiation to my lungs and one lymph node under my arm. Stop Tykerb until completion and then recommence.
1-31-14 Progression in lungs. Oophorectomy performed.
2-18-14 Begin Arimidex and continue Herceptin
7-7-15 progression with spots on colon, in pelvic region, and in lungs. Begin Taxotere, Perjeta and Herceptin.
11-15 Switch to weekly Taxol, and continue with Perjeta and Herceptin.
12-23-16 PET scan shows Complete Response with no new spots. Continue on with TPH indefinitely.
3-16-16 Still no evidence of disease, break from Taxol. Continue on with Perjeta and Herceptin.
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Old 07-16-2013, 01:11 PM   #5
phil
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Re: Kadcyla is kicking my butt on my Bday! Ouch!

the s/e are often more severe in the first few rounds. aches, chills, fever , fatigue, i would suggest waiting to see what scans show , before dose reduction. we tried to balance getting max cancer killing effect w/ side effects. Lorraine got 7 doses at full strength , then went to 3.0. has done great w/ it. ned. but has low plats. in hindsight , maybe should have done first 4-5 at max dose, then reduced , might have helped plats.
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Old 07-16-2013, 02:03 PM   #6
KsGal
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Re: Kadcyla is kicking my butt on my Bday! Ouch!

First..big birthday hugs! Happy Birthday, Ceesun!!! Im so sorry the side effects are kicking your butt. Do you have any prescription pain meds that you could take? Im certainly sending many prayers and a lot of positive energy your way. I hope it lets off a bit so you can do something special.
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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
Clear/NED
April 2015 remain NED
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Old 07-16-2013, 03:09 PM   #7
ElaineM
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Wink Re: Kadcyla is kicking my butt on my Bday! Ouch!

Sorry you are a bit under the weather today. Have a belated celebration later. You hit a milestone. Congratulations. Keep going.
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12 years and counting
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Lucky 13 !! I hope so !!!!!!
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Old 07-16-2013, 03:36 PM   #8
Cat
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Re: Kadcyla is kicking my butt on my Bday! Ouch!

Happy Belated Birthday!!!
I hope you get some relief in the next couple of rounds and can benefit from it. I've always wondered what makes some more sensitive to various chemos but try to have a fun belated birthday and enjoy whatever you can. Drink lots of water, I swear it helps me in many ways.
Hugs,
Cathy
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3/06 DX stage III er-pr-her2+++ breast, 1+node
age 49 and 364 days
3XAC 4X taxol and herceptin continue herceptin one year
bilat mastectomy w/TRAM
32 rads
9/08 recurrance 4 sternal nodes
mediastinoscopy, able to remove 3
taxotere, carboplatin, herceptin, x6
continue herceptin indefinately
5/10 recurrance in same node/area
mediastinoscopy, removed nodes
added tykerb
27 rads
10/18/10 PET shows inflammation no active disease
8/2011 recurrence one right mediastinal node, xeloda and proton radiation to node.
D/C xeloda due to toxicity
12/5 PET scan clear
2/2012 colon blockage, breast cancer
(never thought it could go there! thought I was constipated)
start abraxane, herceptin, continue tykerb
10/2012 Kidney ablation (renal CA!)
3/2013 CT and biopsy R kidney (BC met to R kidney)
4/4/2013 Begin Kadcyla
7/30/13 Craniotomy cerebellar mets, 1.7cm 3cm
Sept 4-6 post op cyberknife
Sept 23 ablation right kidney (blow up pesky breast ca met)
Oct headaches MRI Oct 10 (only surgical changes ! Yay!)
Short of breath. CT, pulmonary function, echo
New crap in right lung heart good. Pooh!
12/13 DC kadcyla. Begin halaven
2/14 MRI brain NED Yay!
4/3/14 CT mostly stable but breast mets r kidney growing
4/16/14 ablation right kidney again
Continue halaven, tykerb
dc halaven gemzar?
2nd opinion May 14
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Old 07-16-2013, 04:17 PM   #9
CoolBreeze
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Re: Kadcyla is kicking my butt on my Bday! Ouch!

Happy Birthday! I'm so sorry Kadcyla is kicking your butt but maybe next birthday you will be NED and the birthday after that, and after that.......
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08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 07-16-2013, 05:48 PM   #10
NEDenise
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Re: Kadcyla is kicking my butt on my Bday! Ouch!

Cathy,
I hope by now you're feeling a little better!
Rest... be good to yourself... and HAPPY BIRTHDAY!

Denise
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Old 07-16-2013, 06:00 PM   #11
karen z
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Re: Kadcyla is kicking my butt on my Bday! Ouch!

Happy Birthday and congrats on the new grandchild to come.
Don't feel bad about some complaints.......things are not always easy.
Celebrate when you can and do it up right!
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