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Old 11-10-2016, 07:08 AM   #681
silvergranny's Avatar
Join Date: Jan 2016
Location: Ontario, Canada
Posts: 5
Re: Please post your two cents on Herceptin "side effects" real or perceived!

I receive a Herceptin treatment every three weeks for a total of 18 treatments. I started Herceptin on Feb. 11, 2016 with four cycles of chemotherapy along with Docetaxel and Carboplaten. Also received 20 radiation treatments after the chemo. I refused to take the Arimidex as Lupron (from the same drug family) destroyed my immune system in my mid forties and I still suffer from the damage. My Herceptin side effects are a very runny nose, increased muscle/joint pain, hives, blurry eyes, bladder incontinence, hair not growing back on the top of my head, exhaustion, sleep disturbances, bloating in stomach. Thankfully my heart function is good and I get an echo cardiogram every three months.
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Old 11-10-2016, 03:06 PM   #682
Carol Ann
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Join Date: Dec 2013
Posts: 947
Re: Please post your two cents on Herceptin "side effects" real or perceived!

I had the runny nose, muscle twitches in my eyelids (still do sometimes), 2 mild shingles breakouts, fatigue, neuropathy in my feet, and my hair didn't start to really grow back until I was finished with Herceptin, 2 years ago now this month.

The second attack of shingles was just last January, a year after my last Herceptin.

My heart function stayed normal the entire time.

Carol Ann
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 02-26-2017, 07:28 PM   #683
Join Date: Nov 2016
Location: Greater Hartford, Connecticut.
Posts: 8
Re: Please post your two cents on Herceptin "side effects" real or perceived!

In 8/2015 I was diagnosed with stage IV BC w/ bone mets. Been on Herceptin every 2 weeks since 9/2015 with no end in site for that. Infusion of Herceptin every 2 weeks so it coincides with Zoladex and Xgeva injections. My only side effect of Herceptin was a reduction in my EF which a trip to the cardiologist fixed with a beta blocker. I've tolerated all the meds including chemo remarkably well. The chemo did permanent damage to my kidneys, but surprisingly they've healed more than expected. Overall I haven't had many health issues despite having stage IV with bone mets.
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Old 09-24-2017, 08:28 PM   #684
Join Date: Jan 2017
Location: Moorestown NJ
Posts: 16
Re: Please post your two cents on Herceptin "side effects" real or perceived!

Finished Taxol almost 5 months ago, continuing with Herceptin q 3 weeks. Only side effect is a runny nose.
Age 53 at diagnosis
11/2016 Mammo/US/Biopsy: 8 mm ER+/PR+HER2+ mass grade 2
12/23/2016 lumpectomy with 3 sentinel nodes removed; all nodes negative for mets. Developed armpit seroma which required 3 aspirations before resolving. Positive anterior margin will be treated later with tumor bed boost during radiation portion.
1/12/2017 Port inserted
1/17/2017 Began Taxol/Herceptin weekly
4/19/2017 Finished Taxol. Continue with Herceptin every 3 weeks for remainder of year.
5/11/2017-6/15/2017 daily radiation treatments to affected breast.
7/6/2017 Started daily Tamoxifen.
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