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Old 12-17-2008, 07:32 PM   #1
Laurieanne
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Steroids

Hi guys,
I finished my six tx of TCH the day before Thanksgiving with many problems. I seemed to be allergic to Taxotere and then the carbo and the herceptin. They kept giving more and more steroids to the point where they were afraid to give me anymore. The crash from that tx was horrible. Today I had my first three week tx of herceptin and when they gave me the solumedrol. I had an immediate reaction. Now they think my reactions weren't the taxotere or carbo & herceptin ,but the solumedrol. They gave me Decadron push,but I came around very slowly.

Tonight I am totally wiped out. My muscles are so week I can barely move. I'm sweating and exhausted.I would have thought I'd be buzzing around tonight from the decadron. Has anybody had anything like this happen. I'm wondering if I should go back to every week for herceptin. Although it would be a little more inconvienient. I don't want to feel like this. I thought just herceptin would be so much easier. My oncologist is really great and says," it's up to me".

I'd really appreciate some advice on this one. They tell me most people are o.k with the steroids, and getting the herceptin at three week intervals.

I also had a reaction tothe benedryl on tx # 2. Which now they think may have also been the solumedrol. They wanted to try that again today, but I wouldn't let them.

Thanks'
Laurie
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Old 12-17-2008, 08:33 PM   #2
ElaineM
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Wink steroids

I never took solumedrol, but I have to take benydryl and predisone when I get cat scans, because I am allergic to the iodine based injection. The benydryl wipes me out. It takes another day to completely recover.
Can your doc look on the information about your chemo to see what is actually recommended? Some types of chemo require pre meds and some do not. I didn't need pre meds for Herceptin, but I did when I took Taxotere.
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Old 12-17-2008, 08:54 PM   #3
caya
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I had no premeds whatsoever with my every 3 week Herceptin. I was fine - wiped out for the first weekend after my Thursday infusion, but then more or less okay. I did have premeds with the Taxotere.

Good luck in sorting this out Laurieanne.

all the best
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1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
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Old 12-18-2008, 07:00 AM   #4
Mary Anne in TX
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Laurie, I never had premeds with herceptin. I did have it slowly to avoid any possible reactions and did just great for 2 1/2 years. Please consider the herceptin. I had reactions to taxol and it really scared me, but remember the goal....they'll help you find a way. ma
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Diag. 12/05 at age 60
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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.
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Old 12-18-2008, 09:06 AM   #5
jones7676
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The only thing I can tell you is that my greatly educated "cancer research employed" friends believe that the chance of my developing mets as fast as I did would have been greatly reduced had I been exposed to Herceptin on the first treatment round.

Secondly, I almost always receive some steroid type meds with my pre meds and it seems my body has slowly adjusted and tolerates it much better than it did initially.

It is your important decision to make though....and I would get as much professional and personal input as I could.

Good luck!
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10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
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Old 12-18-2008, 09:18 AM   #6
BonnieR
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Laurie, what does your onc mean "it's up to me"? You need information on which to make treatment decisions. Can you get some other opinions about what is going on? The pharmacists who prepare the IVs at our cancer center were available to answer questions. Is that an option for you?
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"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
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Old 12-18-2008, 05:17 PM   #7
Laurieanne
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Thank you guys for all your replies. I didn't mean to imply I was thinking about not doing herceptin. I am definitly doing herceptin. I was wondering if I should do it weekly or every three weeks, and if I might try it with no pre meds.
My doctor mean't it was up to me. If I did herceptin weekly or every three weeks. He does help me with the decisions, but it seems like I get more helpful information right here from you. Which I am truely grateful for.
I love you guys, Thanks,
Laurie
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Old 12-18-2008, 07:18 PM   #8
StephN
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Hi Laurie -

You are not alone in feeling bad after your primary treatments. It takes a while for all of us to feel better and just going to the cancer center can bring on effects.

Some of the other ladies here stayed on the weekly Herceptin and that was better tolerated while they recover from the hard chemos.

In my case I have been on Herceptin for 7 solid years and never took any premed for it. For a while I got my Herceptin with Taxol and Navelbine and had light premeds for those drugs. Never took anything when just getting Herceptin.

Be sure you are getting enough liquids and rest to help with recovery from the chemos. Good diet also helps rebuild your system. Hope you will feel better soon now that the real culprit has been discovered!
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MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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