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09-18-2008, 04:09 AM
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#1
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Senior Member
Join Date: Jun 2008
Posts: 67
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Herceptin ?
Hi Everyone,
I've had my second treatment TCH with no problems, but when I have the herceptin by itself in between. I
have been getting the shakes.
Yesterday they gave me extra steriods, but I worry
if I have to take the herceptin for at least 18 months
like we're planning, and have to take steroids the whole time. What that will do to my health.
Has anyone had reactions to just the herceptin? My
doctor said it's rare.
Thanks, Laurie
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09-18-2008, 02:11 PM
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#2
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Senior Member
Join Date: Jul 2008
Location: Murfreesboro, Tennessee
Posts: 48
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Laurie - I have had one TCH and 2 herceptin only so far and had a reaction only to the benadryl pre-herceptin. I don't take steroids before the herceptin only, just before the TCH. Sorry I cannot be of help to you but I just wanted to post and let you know I am at about your same timeframe on the TCH - so far I am hopeful for no herceptin only side-effects (certainly not like the b###-kicking I got from TCH!) Hang in there!!!!
__________________
Dx June 2008, Age 44
Mother Dx age 54, deceased
1.2 cm tumor right breast, grade 3, ER 4+; PR 3+
HER2 +, invasive ductal carcinoma
Quadrantectomy right on 7/30/08
Path report, all 3 nodes taken were clear!!!!!!
Lymphatic/vascular invasion and sent out BRCA testing
Port in on 9/2/08. Chemo began 9/3/08. TCH (MUGA wrong - echocardiogram says 65% cardiac MRI 59% 9/10/98 elevated liver enzymes, PET scan 9/16/08 all clear.
TC ended 12/17/08
Port blood clot and hosp. 1/2/09
radiation begins 1/8/09
BRCA testing done - results NEGATIVE!
cardiologist said go back to coreg as it helps counteract heart effects of herceptin and slowly increase dosage - now 40mg daily.
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09-18-2008, 02:33 PM
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#3
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Senior Member
Join Date: Jun 2008
Posts: 67
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Rebecca,
What does a reaction to benadryl feel like. My nurse
said she was thinking it might be the benadryl and not the herceptin. I know my heart races with the benadryl, but
do you get any other symptoms?
Laurie
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09-18-2008, 06:37 PM
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#4
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Laurie, What you might want to discuss with your oncologist and chemo nurse is to slow down your herceptin infusion. Most want to give you your herceptin in 30 minutes. I know I had major headaches imediately & other minor side affects when I was given herceptin to quickly.
So I asked my chemo nurse if we could slow down my infusion to at least 45 minutes to a hr? Once we changed it to one hr I never had any more problems.
How long is your infusion time for just herceptin wkly ? When you get your full chemo with TCH all together your IV infusion of herceptin might me much slower therefore you don't have any problems? (Just thinking here.)  So when you go in for just the herceptin alone they might be giving it to you to quickly. Its just one thing I can think of you can try that might be causing this problem your having? Talk to your onc & chemo nurse about this.
As to the benadryl the main side affect is sleepiness, fatigue, and dizziness. But everyone's body reacts differently so I am sure your team & you will figure this out. But I would be interested to know how long your herceptin infusion are when you go in for just herceptin? If your onc has ordered extra steroids when you do just your herceptin infusion that must be only to stop the side affects your having with the shakes. When you had the steriods along with herceptin did it stop your problem? I don't blame you for not wanting those darned steriods. But hopefully slowing down your herceptin infusion just might work? (Discuss that as a possiblity with your onc & chemo nurse.) Hang in there.
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.
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09-18-2008, 07:58 PM
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#5
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Senior Member
Join Date: Jan 2008
Location: Carmel, Indiana
Posts: 98
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Laurie,
I always infuse the Herceptin over 90 minutes, plus I ask them to give me fluids. I do fine with that. Otherwise, I feel yucky and cough a lot. My only other symptoms from the Herceptin are acne/breakouts. When I did the chemo, it always hit me hard around day 6.
Good luck,
Beth
__________________
DX 9-19-07 at age 40
DCIS, Inv. Duct. Car. 3 cm
Positive lymph node biopsy
Er+Pr+Her+++
Carboplatin/Taxotere/Herceptin
10-1-07 -- 1-16-08
Herceptin every 3 weeks until 9/24/08
Lump. and node dissection 2-12-08
BRCA1 and 2 negative
30 rads finished 4-23-08
oophorectomy 5-6-08
Femara started 5/25/08
Zometa for osteoporosis every 6 mo. started 9-24-08
Married 16 years!
3 kids - daughter (10), twin sons (7)
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09-19-2008, 06:31 AM
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#6
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Senior Member
Join Date: Jul 2008
Location: Murfreesboro, Tennessee
Posts: 48
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Laurie - my herceptin infusion is an hour by itself. My side effects are sleepiness. Beth - thanks for mentioning the breakouts - I wondered which drug was doing that to me! What a party!
__________________
Dx June 2008, Age 44
Mother Dx age 54, deceased
1.2 cm tumor right breast, grade 3, ER 4+; PR 3+
HER2 +, invasive ductal carcinoma
Quadrantectomy right on 7/30/08
Path report, all 3 nodes taken were clear!!!!!!
Lymphatic/vascular invasion and sent out BRCA testing
Port in on 9/2/08. Chemo began 9/3/08. TCH (MUGA wrong - echocardiogram says 65% cardiac MRI 59% 9/10/98 elevated liver enzymes, PET scan 9/16/08 all clear.
TC ended 12/17/08
Port blood clot and hosp. 1/2/09
radiation begins 1/8/09
BRCA testing done - results NEGATIVE!
cardiologist said go back to coreg as it helps counteract heart effects of herceptin and slowly increase dosage - now 40mg daily.
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09-19-2008, 07:09 AM
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#7
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Senior Member
Join Date: Jun 2008
Posts: 67
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Hi Guys,
Thanks for the help. My herceptin infusion was 90 min the first
time. Then 60 min twice then 30 min three times. I had no problems until they started doing it in 30 min. Now I get the shakes during infusion and the day after I have a really bad headache. I rarely get headaches. I did mention to my nurse that it seems to bother me at 30 min, and that's when they decided on the extra steroids.
I hope we figure this out. I don't want to feel like this for another year and a half. I have my third TCH this Wednesday. I'm going to speak with my doc about it.
Laurie
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09-19-2008, 12:46 PM
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#8
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Laurie, After reading your post your problem sure seems like its due to the 30 minute infusion time. They need to slow it down for you. I'm serious...there have been too many other women that have had problems with 30 minute infusions of herceptin. (Not all...but quite a few.) When I did the 30 min infusions I always got a really bad headache, and twice I stood up and almost went down because I got so dizzy. It came on fast. My chemo nurse caught me just in time once..she could see how bad I looked. Once we changed my infusion time to 1 hr...no more problems. Then herceptin was a piece of cake.
Since you had no problems with the 90 min & 60 minute infusion I certainly think this could really be what's causing your shakes. Please talk to your onc and chemo nurse because that would be awful to have to take all those steriods for the entire year of herceptin if it wasn't necessary just by increasing your infusion time. There is another benefit to longer infusion times of herceptin...its easier on the heart. So I really believe if you have them slow it down to at least 1 hr this will get rid of your problems. (Then...no more steriods) Let me know how it goes. It sure is funny the only time you had problems with it was when it they gave it to you in 30 minutes?
You mentioned your headaches...my chemo nurse always gave me two tylenol before my infusions and it did seem to help. (Just another thought.) Let me know how it goes.
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.
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09-19-2008, 06:19 PM
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#9
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Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
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the only problems i had with herceptin was the benadryl. it made my legs really jump and jerk causing me to have to get up and move. then once that settled down i took a nap. by the time i was ready to go home i was fine.
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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09-19-2008, 07:26 PM
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#10
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Chelee is right about slowing down your drip. That can help a lot.
Re: Benadryl. How are they giving it to you? Do they give you a pill (which is what I get, continue reading to learn why), is it in a bag and a drip, or is it a push with syringe into your line.
Benadryl push from syringe - hits your blood stream FAST and strong. I had a horrible reaction to it... I was almost in a coma, so drugged that I couldn't talk or move my limbs for about an hour. It took about 8-10 hours for it to wear off. My eyes were dilated, I was shakey and my heart was racing the rest of the day. It was a virtual out of body experience the one time they "pushed" it. NEVER AGAIN!
Benadryl drip - it drips slowly before the Herceptin, and it hits the blood stream a lot slower. This method is also too strong for me, just absolutely knocks me out for about 5 hours... turns me into jello. But not at all like from the syringe.
Benadryl pill - this is the normal one pill strength of Benadryl, and it is all I need to mitigate the slight Herceptin allergy that I get from Herceptin infusion. They give me a pill, I swallow it, and all is good in the world. I take a nap and that's that.
It is written in my chart (big red letters inside the front of my file) - to give me benadryl PILL only.
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
Last edited by hutchibk; 09-19-2008 at 07:30 PM..
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09-19-2008, 07:36 PM
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#11
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Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
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I have to agree with the rate of the drip. With my first infusion of Taxol/Herceptin I woke up from my benadryl induced sleep extremely hot and sweaty. The nurse slowed my drip and I was fine. When I was on Herceptin alone I didn't get benadryl and my infusions were given over 90 minutes. I tolerated it just fine.
__________________
Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
********** Enjoy the little things, for one day you may look back and realize they were the big things. - Robert Brault
Last edited by Gerri; 09-19-2008 at 07:41 PM..
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09-19-2008, 07:43 PM
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#12
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Senior Member
Join Date: Oct 2005
Posts: 823
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I had my weekly infusions done in 60 minutes. If it was done faster I had horrible headaches and didn't feel well. I always was given a Benedryl pill and two tylenol at the time of infusion.
__________________
Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
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09-19-2008, 07:51 PM
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#13
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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I also had my Herceptin given over 60 minutes - did the trick for me. I would come home that afternoon and sleep for a couple of hours, and nap for the first few days afterwards - but no shakes, no more headaches like I had when the infusion was 30 minutes.
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
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
Oopherectomy October 2013
15 Years NED!!
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