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Old 11-10-2016, 07:08 AM   #681
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Join Date: Jan 2016
Location: Ontario, Canada
Posts: 8
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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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: 10
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: 17
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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Old 10-30-2017, 11:04 AM   #685
Join Date: Nov 2012
Posts: 6
Re: Please post your two cents on Herceptin "side effects" real or perceived!

I am wondering if anyone is still talking about Herceptin Side effects? I am on maintenance treatment of Herceptin and Perjeta every three weeks indefinitely fo rthe maangement of Metastatic HER2+ breast cancer. I have noticed a couple of things the longer I have been on it. Easily fatigued, leg foot and ankle cramps or pain, neuropathy in my right hand and arm, horrible vision, sores and scabs in my nose. Anyone else have similar symptoms? I have also gained almost 30 lbs in two years without any change to my diet.
11/1/12- Biopsy results confirm Breast cancer
11/2/12- Diagnosed with ER-/PR-/HER2++++ Invasive Ductal carcinoma Stage 2A
12/5/12- Port Surgery and Sentinal Lymph Node Biopsy
12/13/12- Lymph Nodes Biopsy is Negative!! First Chemo Treatment TCH
03/27/13-Last Chemo!
04/02/13-PET/CT Scans, Breast MRI
04/09/13-Test results show complete resolution of tumor
04/17/13-Begin Just Herceptin
05/10/13-Right Breast Mastectomy Scheduled
5/15/13- Right Mastectomy with expander
8/2013- Implant surgery
9/2013- Implant revision surgery
1/2014- Implant Revision Surgery
5/2015- DX Stage IV MBC to Sternum ER-/PR-/HER2+
5/015- Begin 6 months Taxol/Herceptin/Pertjeta
11/2015- Last Chemo!
1/2016- Begin 12 rounds radiation
5/2016- NED!!!
ONGOING- Herceptin/Perjeta Infusion every three weeks indefinitely
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Old 10-30-2017, 11:31 AM   #686
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Location: Denver, CO
Posts: 1,427
Re: Please post your two cents on Herceptin "side effects" real or perceived!

I had foot cramps, runny nose, nose bleeds. No weight gain. I'm about to go back on just H&P, since chemo seems to do more harm than good.
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 10-30-2017, 04:37 PM   #687
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Posts: 568
Re: Please post your two cents on Herceptin "side effects" real or perceived!

My experience is similar. I have been on it for two years and have wicked horrible muscle cramping, particularly feet and legs. My feet, tingle and burn. My nose drips continually, I sneeze a lot and have scabby sores inside, I have an insatiable itch up my left arm, shoulder and collar bone. The fatigue is debilitating. I am well enough and function just fine so I will not complain because I am alive.
Tracy Arcari
11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%)
HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!
2/5/18 CT & BS = STABLE

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Old 08-21-2018, 08:24 AM   #688
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Join Date: Jan 2016
Location: Ontario, Canada
Posts: 8
Re: Please post your two cents on Herceptin "side effects" real or perceived!

I finished my last dose of Herceptin in December 2016 and have noticed a new bad body odor has developed over the past couple of months when I go to the bathroom. I am not sure where it is coming from....kidneys/bladder or vagina. I have no itch or discharge though. My urine smelled really bad during my Herceptin treatment so I am wondering if anyone else has developed this problem especially so long after treatment? I am going to the doctor tomorrow but wanted to know what to get checked and if this is common. Thanks.
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Old 08-26-2018, 01:05 PM   #689
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Posts: 157
Re: Please post your two cents on Herceptin "side effects" real or perceived!

Just one question. Do you drink enough water??? You can use a clear plastic little cup ,
thats used in the bathroom dispenser holders to check to see how dark it is.

If its real dark start pushing fluids a little more and keep checking. I am still on chemo
for the rest of my life and I do this to make sure I am getting enough . I also drink
from certain cups and water bottles that mentally tells me how much I had.
IF this doesnt resolve doing this go to med express or your primary care-they will check for bladder /urinary track problem.
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Old 08-26-2018, 07:48 PM   #690
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Location: Ontario, Canada
Posts: 8
Re: Please post your two cents on Herceptin "side effects" real or perceived!

I drink enough water. Urine is very pale. My doctor is already running tests. Just saw him this week.
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