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Old 08-26-2008, 04:20 PM   #1
carol7403
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Herceptin side effects

Hi everyone-I'm new to this board and I've got a question for everyone taking herceptin. I finished chemo about 6 months ago, and have only 3 more herceptin treatments to go before I'm done. I was wondering if anyone else out there is having a hard time with feeling tired, achey and just generally unwell with herceptin? I know a lot of people say that they have no side effects from it, but I just feel run-down, beat-down and exhausted. I had a muga recently that was fine, and blood work is fine. I just am so tired all the time, and the herceptin makes me feel flu-ish for quite a few days, with an increasing tired feeling with each treatment. Kind of dreading the last 3 treatments. Anyone out there with a similiar experience? Thanks-I hope I'm not the only one struggling with herceptin!
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Old 08-26-2008, 05:12 PM   #2
Sheila
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Carol
I believe there is a thread about Herceptin Side Effects, you can do a search on it...many of us have had little or none, some have had an awful time with Herceptin. Like any treatment, we all react differently. Have you tried taking Benedryl and Tylenol after the treatment and for a couple days? It might help...just be happy you have only 3 to go....I am fortunate that I really have had no side effects other than the runny nose on it...next month will be 5 years straight of the super H....I am sure others can respond...but remember, we are each individuals, and we respond differently.
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Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 08-26-2008, 05:26 PM   #3
DanaRT
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Carol, Here is a good thread to read about side effects --

http://her2support.org/vbulletin/showthread.php?t=23696

I am tired a lot of the time and then don't sleep well. Nerves, negavtive thoughts keep me awake. I take Ambien every night for that. There are still days I have "re-group" or "re-energize" and they happen to be about four days after a herceptin treatment. All I want to do is be alone, read, rest, watch a movie.

Best wishes,
Dana
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Diagnosed - Nov. 2, 2007 at 45
Lumpectomy - Nov. 13, 2007
Tumor 1.2 cm
Stage 1 Grade 3
ER/PR - Her2 +++ (3.8)
Taxotere/Carboplatin/Herceptin- 6 rounds
Neulasta
Radiation 33 treatments - will be done 6/6/08
Herceptin through 12/08
12/07 MUGA 61%, 4/08 MUGA 60%, 7/08 MUGA 64%
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Old 08-26-2008, 08:09 PM   #4
madubois63
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Hi Carol - Welcome to the boards. Sorry your here, but you've found a great place for finding support, making friends and getting the best an most up to date info. I took Herceptin for 1 1/2 and am back on Herceptin again after 2 years. I am one of the lucky ones that has had no side effects from the Herceptin. You may still be feeling tired from the chemo. Chemo is accumulative and many people feel the fatigue for years. If I were you, I would take Sheila's advice and ask for Benadryl and Tylenol prior to infusion. Keep it up sweetie. Remember, you physically and emotionally have been through a war and deserve time to recoup...We are lucky to have Herceptin. You've only got 3 more to go...Good luck!!
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Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
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Old 08-26-2008, 08:20 PM   #5
Gerri
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Carol,

I read that recovering from treatment takes at least as long as your treatment lasted - for most of us that is well over a year. This made a lot of sense to me. I still feel tired and I have been done with treatment for a year and a half. I do take Femara which probably adds to my fatigue. Give your body the time it needs to recover and yourself permission to take it easy when you need to.
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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
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Old 08-27-2008, 03:29 PM   #6
juanita
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Give yourself time to heal. It's probably left over fatigue from your chemo.
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1 yr herceptin,
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Old 08-27-2008, 05:26 PM   #7
SoCalGal
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Hi Carol-

I thought of a couple of things - when I was on herceptin for 20 months I wound up spacing out the last 6 months of treatment to every 4 weeks. It made a big difference in my energy level. I agree with Sheila - I would for sure use benedryl and if you can tolerate - ask about taking a single dose of prednisone before each infusion. Some people have a little allergic reaction to herceptin. Also - walking (or exercising) each day really is the only known "cure" for deep chemo fatigue.
Flori
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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.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
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
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
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)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
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
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
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.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 08-28-2008, 05:52 PM   #8
Louise O'Brien
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I finished Herceptin a few months ago - but the nurses always gave me two Tylenol before every infusion. I think it helped.
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Old 08-28-2008, 07:16 PM   #9
Joan M
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Carol,

I'm back on Herceptin but it seems to have very little side effect on me. I go every 3 weeks. The nurses give me two Tylenol and one Benedryl, which actually make me sleepy there.

But glad to here you have only a few treatments to go!

Joan
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 08-28-2008, 11:06 PM   #10
BonnieR
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I was tired alot. Worse towards afternoon. So I learned to do my errands earlier in the day. And my stamina in general was decreased.
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Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 08-30-2008, 07:42 PM   #11
murphyrose
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Hi,

I am just finishing my one year on Herceptin and have noticed it getting harder with each treatment. I have alot of pain (feel like someone is beating me with a baseball bat!) and fatigue. I also feel more emotional as I am nearing the end. The tylenol is a good idea and some days I have even had to take a percocet for the pain. Hang in there...you are almost done!! You can do it!!
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Dx. 6/07
Bilat. mast.7/07 with tram recon.
DCIS and 1cm invas. tumor on rt.
er/pr -, Her +
3rd sister of 8 to get BC
5 rounds tax/carb/her
Last round Her. 9/10/08!!
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Old 08-31-2008, 04:37 PM   #12
juanita
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I am two years out from the end of herceptin and those side effects do go away. the only two things I still have problems with are tingling in toes on right foot and sinus infections a lot more easily. Hang in there!!!!
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st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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Old 09-05-2008, 07:53 AM   #13
Joan S.
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Herceptin Side Effects

I have been on Herceptin for over a year now and the main side effect for me is fatigue. I find that exercise really helps to give me energy(and it's good for us) and I try to pace myself. By about 4:00PM in the afternoon, I am usually pooped. I find that if I over do it and get really tired I pay for it big time. It takes me longer to get back to myself. I feel like if it works it's a small price to pay.
Best of luck to you!
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Old 09-05-2008, 09:26 AM   #14
carstell
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Hey Carol,
I am right there with you.I get bodyaches and goose bumps all the time. At least once a day. My onc thought that maybe the Herceptin might be prolonging the side effects of the Taxol. I think that it is just the dang Herceptin. And yes, I am also tired all the time.I have been taking Alieve in the am and pm, but sometimes still have to resort to my Vicoden to take away the aches! Hang in there.

Cheryl
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10/23/07 first ever mammo turned 40
11/9 biopsy
11/12 dx ILC 1.5cm er/pr+, her2/neu+
11/20 MRI
11/30 biopsy
12/3 another ILC area 8mm
12/21 lft mastectomy with expander placement
12/26 NODES NEGATIVE! However not 2 small tumors.1 bigger one4x3x3.Also DCIS and LCIS noted.grade II,stage IIa.
1/29/08 port placed
1/31 BRCA negative
A/C Done.Taxol DONE
Herceptin every 3 weeks for 1 year
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Old 09-05-2008, 03:16 PM   #15
lexigirl
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I remember being tired the day of my infusions. I would pretty much go home that afternoon and sleep the rest of the evening away. Never an upset tummy, sometimes loose stools (sorry), but overall the herceptin was not to bad for me.

I hope that you feel better soon.

Lexi
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Old 09-05-2008, 03:33 PM   #16
mimiflower07
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hi Carol
I just wanted to share with you that i too am still getting herceptin and fatigue is with me like an appendage. I take ibuprophen into my infusion aswell that evening. No real body aches just fatigue...blabla but..my newest compaint are my feet. Since starting tamox my feet ache!! So your not alone, i have about seven more herceptins to go.
good luck
suzanne
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dx aug10/07
3 pos high, grade 3
tumor 2.5cm multifoc
bil mast recon sept 24/07
neg snb/neg lymph vascular
clear marg
chemo a/cx 4 rds
tomoxifan started feb11/08
herceptin to begin soon
herceptin completed feb/09
aromacin(A.I)for as long as i can
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