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Old 11-18-2016, 02:39 AM   #1
Jackie07
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Re: Update on Paula/Cancer Fightin' Words

I think I did have the 'rigors' while getting Herceptin. Generally I fell asleep during most of the infusion time.

In 2007 I was scheduled to have the infusion Thursday afternoon. I would go to work Friday without too much problem. Then I would (sort of 'pass out' (sleeping day and night) the whole weekend.

Sending you good vibes.
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Old 11-18-2016, 02:56 AM   #2
Paula O
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Re: Update on Paula/Cancer Fightin' Words

How nice to hear from you, Jackie! How are you feeling/doing these days? I hope all is well on your home front.

Thanks for sharing your Herceptin experience.

Paula
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Old 11-22-2016, 11:46 AM   #3
SoCalGal
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Re: Update on Paula/Cancer Fightin' Words

Herceptin is not fully humanized and that can cause one's immune system to react.

I became allergic after YEARS of no problems, so now I have an intense premed regime and an equally as intense titration method. The first hour of herceptin is so slow that it's bumped up in 10 minute increments. The second hour is a steady rate, but very slow compared to norm. I've been able to tolerate treatment this way for several years.

Are they sure it was the herceptin you reacted to?

Do you start with that as opposed to the taxol?
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1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
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3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
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3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
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December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
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Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
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DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
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Old 11-23-2016, 12:30 AM   #4
Paula O
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Re: Update on Paula/Cancer Fightin' Words

SoCalGal asked:

Are they sure it was the herceptin you reacted to?

Do you start with that as opposed to the taxol?


Yes, I got the pre-meds first, then Herceptin was given next, followed by Taxol later. It's great that with adaptations in the pre-meds and titration you've been able to tolerate the Herceptin fine, SoCalGal. I'm glad.

I found this at http://chemocare.com/chemotherapy/dr...herceptin.aspx

The following side effects are common (occurring in greater than 30%) for patients taking trastuzumab. The frequency of side effects reported is based on single agent trastuzumab:

During the first infusion of this trastuzumab, you may develop chills or a fever. Your health care provider might prescribe medicine to prevent or treat these symptoms.

My temp went to 100.8 during the shaking chills which started about 20 minutes into the Herceptin drip. I was a bit surprised because I never had any kind of reaction during the year I took it in the past. My medical team was able to deal with it quickly without further incident and I was able to finish the infusion. Hopefully it'll just be a one time thing with the loading dose and no big deal with the addition of another pre-med and slow infusion.
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Old 11-23-2016, 06:41 AM   #5
Becky
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Re: Update on Paula/Cancer Fightin' Words

I felt horrible after the first Herceptin and of course that one is a bigger dose since it is the loading dose. I know it was Herceptin because I got it alone after chemo was over. It was not available when I started my journey (and the Herceptin trials wer e closed). I started 4 months after chemo was over since it was approved then for adjuvant use. I never felt bad again. Even after I switched from weekly infusions to the every 3 week infusion. I was nervous when I switched because that every 3 week infusion is a big infusion but I was fine and you will be too
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