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Old 07-01-2009, 01:32 PM   #1
donna77
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hives herceptin

I have just had 2 of my 18 doses of herceptin and I am experiencing hives on my lower back. The oncologist's PA saw me on Monday and said that a rash is a very rare side effect of herceptin. He put me one a short course of steroids-but the hives are not disappearing. He said it definitely was not shingles but hives. I am seeing the Dr. for this tomorrow. Has anyone else experienced hives with this drug? Would this cause them to discontinue the herceptin? Thanks
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Old 07-01-2009, 02:05 PM   #2
MJo
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Rare or not rare, this is happening to you. It's important to talk to oncologist. I believe some women here had allergy issues with Herceptin and they were given strong antihistamines during their doses. What type of solution are they using to mix the Herceptin. It could be something in the solution. Maybe they could use a different solution or just plain water. Herceptin is important for us Her2s. I trust that the doctors can manage the situation and continue your Herceptin. If not, maybe you could lobby for Tykerb.
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IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
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Old 07-01-2009, 03:13 PM   #3
jml
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Hi~
The 1st year of my dx I was on qweekly Herceptin, then once NED, I switched to q3week Herceptin.
It was at that point that I broke out in a rash all over my torso - tiny, itchy, red bumps, along with some other issues from the increased dose - like severe arthritic pain in my neck & back. So, I went back to the qweekly dose & all resolved.
That was a number of years back, & over time I was able to go back to the q3week dose without any problems - may just a little flu'ish 24hrs after the infusion.
If you're on the q3week dose, maybe switch to the qweekly dose for a bit? I hope they find some kind of intervention that will give you relief.

Good Luck!
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Old 07-01-2009, 06:02 PM   #4
donna77
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good ideas

Great ideas ladies. Now I will have options to talk to my onc. about tomorrow! I will let you know what he says!
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Old 07-01-2009, 08:27 PM   #5
Darlene Denise
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Hives Rash and Itchy stuff

Yep, when I stopped getting Herceptin weekly with my chemo and pre-meds and they gave me Herceptin alone as a 3 week dose, broke out and puffed up. Added in pre-meds again, Benadryl 50 mg and Zantac and things went along fine.

Hope this is of some help and good luck!

Darlene
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01/14/08 2 AC TREATMENTS-NOT WORKING
02/04/08 13 TAXOL, CARBO, HERCEPTIN TREATMENT-EXCELLENT RESULTS!
05/12/08 HERCEPTIN EVERY 3 WKS
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09/17/08 CYBERKNIFED BRAIN METS
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12/29/08 BRAIN SCAN SHOWS 1 LESION GONE, 7 SHRINKING & STABLE, 1MM ? SPOT
01/16/09 LIVER REOCUR-XELODA/HERCEPTIN
03/02/09 BRAIN SCAN 2 LESIONS GONE, 5 STABLE, 1MM ? SPOT STILL A ?
3/27/09 REGRESSION OF 2 LIVER LESIONS XELODA & HERCEPTIN
06/08/09 STUPID BRAIN HAS 3 LESIONS
06/29/09 CYBERKNIFE
07/01/09 LIVER REGRESSION NO NEW METS
07/07/09 TYKERB XELODA HERCEPTIN
11/11/09 GEMZAR/HERCEPTIN FOR LIVER PROGRESSION
03/22/10 BRAIN MRI GOOD-3 SMALL NECROSIS LEFT FROM ORIG 11!!
03/26/10 CHANGE TO NAVELBINE/HERCEPTIN 3 LIVER LESIONS PROGRESSING IN SIZE
05/21/10 NAVELBINE/HERCEPTIN WORKING!
07/19/10 GOOD BRAIN MRI
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Old 07-02-2009, 05:14 PM   #6
donna77
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Thanks guys. I saw the onc. today and he thinks it could be contact dermatitis. He is going to increase my benadryl and watch and wait.
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Old 07-02-2009, 09:02 PM   #7
alicem
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Hi Donna, I got your message, but wanted to reply here as well. I really hope that you don't have hives. My husband has been dealing with them non-stop since October of 2007. They are the pits. Here's hoping the extra benadryl will do the trick!
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9/22/08 - Biopsy: DCIS, grade 3. ER,PR status: Pos. in 75-90% of tumor cells.
10/01/08 - Ob/Gyn appt.: found complex, mostly cystic mass on right ovary - 11cmx12cmx 8cm
10/15/08 - Hysterectomy & Oophorectomy, Lumpectomy: Cyst on uterus, not ovary - all was benign. Breast - 5 of 6 bad margins. 2 Sentinel Lymph nodes removed, both negative. Stage 0, Tis, N0
12/11/08 - Mastectomy & DIEP reconstruction: Surprise! 2 cm Invasive DC, grade 2 found. One benign internal mammary lymph node. Stage 1, T1c, N0, all clean margins. ER+ (Proportion Score = 2/5, Intensity Score = 2/3) and PR+(Proportion Score = 3/5, Intensity Score = 2/3)
HER2 score = 3+
1/09/09 - Oncotype DX: Recurrence S/core of 60 !?!?! ER status is NEG!! PR staus is NEG! HER2 score = 12.2 (still positive, greater than 11.5 is positive).
1/20/09 - Started chemo: TCH
5/26/09 - FINISHED CHEMO!
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Old 07-03-2009, 02:39 AM   #8
jhandley
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Smile I have had a rash twice

Hi
I have had a rash over my torso twice this year from herceptin. it was not itchy and took a few days to go away. In fact I am discovering that a lot of minor things such as nausea, stomach upset, sinus troubles etc are all from herceptin.

Jackie (down under)
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Old 07-03-2009, 09:36 AM   #9
suzan w
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I also experienced the itchiness, but without a rash. I recall benadryl with the herceptin treatments. I would also get some relief from the over the counter benadryl spray. It also helped to cool down the shower as I was preparing to get out. Somehow hot water aggravated things. Good luck!
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age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 07-06-2009, 06:49 AM   #10
MJo
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Donna - Please keep us updated about how the doctors resolve your hives issue. As an asthmatic with multiple allergies, I'm very interested in medication allergies. In fact, I was so afraid of Herceptin that I had myself allergy tested for mouse allergies -- They used mouse embryos to use the petrie dish when they made Herceptin. Don't know if they still do that. Then I found that Taxol is made from ewe trees and the solution used to mix it is made from castor beans. So I worried about castor bean and ewe allergies. Thanks to careful monitoring by my doctor and nurses, I came through just fine. Had to stop Herceptin early due to heart issues, not allergy issues. Go figure.
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IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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