 |
12-14-2010, 04:53 AM
|
#1
|
|
Senior Member
Join Date: Dec 2010
Location: England
Posts: 38
|
Herceptin and fatigue
Hi!
Have had four treatments of herceptin and am struggling with fatigue. Has anybody else had this problem?
Diagnosed feb 2010. DCIS(2CM) IDC(0.5CM). Node negative, ER+, PR- HER2+. Had 5 X FEC and am currently on tamoxifen and herceptin
|
|
|
|
12-14-2010, 07:43 AM
|
#2
|
|
Senior Member
Join Date: Nov 2010
Location: PA
Posts: 297
|
Re: Herceptin and fatigue
Good Morning. I was on Herceptin for 5 years and I too suffered from fatigue. I am off it for 3 years and I guess my body was so used to being fatigued that I still am. However......it saved my life so I deal with it and am happy to be alive..[and tired]. Mary L
__________________
Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
|
|
|
|
|
12-14-2010, 08:36 AM
|
#3
|
|
Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
|
Re: Herceptin and fatigue
Hello,
Yes I suffered from fatigue though less than when I was on Taxol as well. I was on it for 6 years, now off it and still haven't found my old energy but better here than elsewhere! I also wish I'd lose the weight I gained. Avoid thinking of the every 3 week routine as a drag but as a wonderful gift of life and see it in a positive light, I found it helps.
stay well
sarah
__________________
|
|
|
|
|
12-14-2010, 08:54 AM
|
#4
|
|
Senior Member
Join Date: May 2010
Location: Elizabethton, TN
Posts: 418
|
Re: Herceptin and fatigue
Emma - I'm doing Herceptin every 3 weeks til the end of May 2011. I feel sort of like I have the flu for the first few days after the treatments but after that not as much. I just finished 33 radiation treatments and am having more fatigue but I think its more the rads than the Herceptin. I have found that if I try to get even 15 minutes of mild/moderate exercise a day (walking, stretching exercises) then my energy is much better. Some days I just don't feel like it, so I don't. Treat yourself well - try not to stress - it's exhausting.
__________________
Joni -64 yrs old -
3/01/10: found lump in rt.breast
3/12/10: mammogram/ultrasnd/biopsy-invasive bc & DCIS; 2 tumors (2cm er-/pr-/HER2-& 1.8 cm er-/pr-/HER2+); grade 3;poorly differentiated
3/24/10:sent.node biopsy clear
3/31/10:bi-lateral mx.;atypical ductal hyperplasia-lft side
4/21/10:wound revision-infection/scarring 4/28/10:seromas both sides
5/21/10:port installed,TCH chemo (6 x 3 wks); Herc,-1yr; 33 rad tx after chemo
07/2010: port not working-2nd port didnt'work;3rd port opposite side.
07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
08/2010: hospitalizations w/3 of chemos; decision to stop after 4th-on to radiation in Oct 2010;Herc cont.
12/03/2010 - finished 33 rads Hooray!! cont. Herc. every 3 wks
4/2011 - pneumonia ??? Nope-radiation pneumonitis. No more Herc.
5/2011 - NED!!! port out.
8/2011 - clean PET & CT scans.Still NED
7/2012 - Still NED/very blessed.
2/2013 - 6 mos checkup-all clear. CA2729 down frm 13 to 11.
|
|
|
|
|
12-14-2010, 10:57 AM
|
#5
|
|
Senior Member
Join Date: Mar 2006
Posts: 4,778
|
Re: Herceptin and fatigue
why don't you look under the Herceptin/Tykerb forum. I started a thread on list of side effects of herceptin, real or imagined five years ago and it contains a wealth of information. Feel free to peruse it.
I hope it substitutes for the drug companies' lack of enthusiasm/effort in doing the post-marketing data gathering they are required by law to do, but which doesn't seem to be pursued with much vigor.
It is hard to say what symptoms are delayed symptoms from chemo, symptoms of artificial near-instant menopause, delayed effects of radiation (as most side effects of radiation are delayed), effects of poor sleep and/or anxiety vs true herceptin side-effects, but if we don't try to collect them, how will anyone ever figure it out (as much as it can be figured out)
Good reading!
|
|
|
|
|
12-14-2010, 03:12 PM
|
#6
|
|
Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
|
Re: Herceptin and fatigue
I believe this is the link Lani mentioned. It really is full of alot of good information on Herceptin and it's SE's from so many of our members. Read through it and add any of your SE's.
http://her2support.org/vbulletin/showthread.php?t=23696&highlight=herceptin+side+af fects+real
I find I'm more fatigued the first few days after Herceptin also. It seems to be one of the more common complains.
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.
|
|
|
|
|
12-14-2010, 03:13 PM
|
#7
|
|
Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
|
Re: Herceptin and fatigue
Emma,
I had my Herceptin infusions on Thursdays, and I was exhausted for that first weekend. Major fatigue in general while I was on Herceptin.
totally normal s/e.
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!!
|
|
|
|
|
12-21-2010, 06:01 PM
|
#8
|
|
Member
Join Date: Nov 2010
Location: Ohio
Posts: 14
|
Re: Herceptin and fatigue
Just finished my first round of chemo (t/c) and herceptin. 48 hrs later my bones hurt and fatigue set in. last 3 days. This is the first day I feel normal again. Is this what I should expect each time? 1 ever 3 weeks, 6 cycles and then radiation 33 rounds and herceptin all 2011..
|
|
|
|
|
12-22-2010, 06:07 PM
|
#9
|
|
Junior Member
Join Date: Apr 2010
Posts: 2
|
Re: Herceptin and fatigue
Hi:
Am nearing the end of two years on Herceptin (once every three weeks). I also have experienced fatigue while on Herceptin. It starts during the infusion and lasts about 36-48 hours. I just hybernate for two days and then rejoin the race. Haven't told my onc for fear they'll want to take me off the drug.
|
|
|
|
|
12-25-2010, 01:05 AM
|
#10
|
|
Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
|
Re: Herceptin and fatigue
That's exactly what I had experienced in 2007. I had infusion on Thursday afternoon (usually fell asleep in the infusion chair.) Was able to go to work on Friday. Then I would sleep through Saturday and Sunday - 'so' fatigued...
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
|
|
|
|
|
12-25-2010, 01:11 AM
|
#11
|
|
Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
|
Re: Herceptin and fatigue
Cancer = lifetime fatigue. It's a tiring disease. :-) One PROVEN remedy to fatigue is to walk for 20 - 30 minutes everyday. Exercise really does help! I got a dog last year to force me to walk everyday. Read Lani's post. It's worth it. I've been complaining about being tired for 14 years. I hope to continue complaining for at least another 14 years!!
__________________
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.
|
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 02:14 PM.
|
Linear Mode
