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Old 07-22-2014, 08:14 AM   #1
Colleen
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Location: Monarch Beach, CA
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Chemo related syncope/vasovagl

Anyone out there have syncope/vasovagal/fainting episodes since beginning chemo? I had my first one in January after my 4th cycle of taxotere/Herceptin/perjeta. Ended up with a lovely ambulance ride, six stitches in my chin, and four chipped teeth. Just had a second one a week ago. The second one followed my daughter's wedding at the end and I felt it coming on so I was able to avoid the drama and injuries of the first one. I have had a full neurological work up following the first one, two brain MRIs and an EEG. Also had an EKG done with the first one, all of these tests came back perfectly normal. Now my oncologist wants me to have a full heart workup with a cardiologist. Anyone else experience any of these syncope symptoms? And if so what was the cause and how was the cause determined?
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Old 07-22-2014, 02:59 PM   #2
StephN
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Re: Chemo related syncope/vasovagl

Hello Colleen -
Sorry to hear about your fall and stitches.

I did experience fainting spells during my various rounds of chemo. It was determined to be related more to my falling blood counts, especially white cell count.

My fatigue happened from time to time, and I could be doing something as unstrenuous as sitting at the table, the computer or watching TV and feel the fainting coming on. My husband started watching me more closely and I always avoided hitting the floor, just being lowered if I could not make it to a couch or bed.

My heart tests did not come up with any reason. Hope you will get over these spells as I did.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 07-22-2014, 06:12 PM   #3
Adriana Mangus
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Re: Chemo related syncope/vasovagl

Colleen,

Haven't experienced anything as severe as you, but from time to time I do feel dizzy, especially now that am on abraxane with herceptin.

Glad to hear all your neurological exams and MRI and all the rest come back negative. It's always a relief to not have to hear the word "C">

Take care,

Adriana
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1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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Old 07-23-2014, 10:53 AM   #4
Lisalou
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Re: Chemo related syncope/vasovagl

Hoping all comes out well. Do the Cards work up. It is standard of care after a syncopal episode. If that is fine and with previous work up then you can attribute it to the chemo.
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Routine mammogram 12/20/2013
Call back with repeat films on12/31/2013 Ultrasound with core needle biopsy same day
Dx 1/2/2014 IDC ER/PR+
1/10/14 HER2 +
2/14/14 BRCA results negative
2/17/2014 skin & nipple sparing BMX with reconstruction Tissue expanders placed
IDC Stage 2A left breast. 9mm tumor no other CA 1/4 nodes positive
ER + PR + Her2 +(by FISH)
Right breast no cancer, sclerosing adenosis
3/13/14 Round 1 AC minimal side effects
3/27/14 Round 2 AC
4/10/14 Round 3 a little more nausea
4/24/14 round 4 hurray! Done with phase 1!
5/8/14 THP ( taxol weekly x12, Herceptin & perjeta every 3 weeks x 4)
7/24/14 done with chemo
Continue of Herceptin every 3 wks x 1 yr
5/14 start Tamoxifen x 5 years
8/18/14 removal of TEs silicone implants placed
9/14/14 Cellulitis Right Breast, suspect infected implant. Managed with Oral antibiotics, avoided surgery to remove implant. Whew!
12/17/14 nip & tuck revision of Left breast

We gain strength, courage, and confidence by each experience in which we really stop to look fear in the face. The danger lies in refusing to face the fear, not in daring to come to grips with it. We must do that which we think we cannot do. -Eleanor Roosevelt
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Old 08-05-2014, 12:25 AM   #5
Aussie Girl
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Re: Chemo related syncope/vasovagl

Dear Colleen,

Sorry you are having this problem. Fainting is a fairly common symptom in the general community, sometimes in otherwise healthy people, although commoner in people with an illness that leaves them tired and weak. It sounds like you are getting the right work up to exclude any major problems.
Chemo causes anemia, gut problems that may cause dehydration, and can affect your nerves - not just in your hands and feet, but also the nerves that control your blood vessel dilation and therefore your blood pressure. Sometimes the drugs affect your heart which needs to be checked out. All of these things can cause fainting and will usually improve once chemo finishes.
So take care. Keep well nourished and well hydrated and avoid getting up quickly. Wearing support stockings that improve circulation of blood back to your heart may help. Sometimes you can work out what days of the chemo cycle are worse or what activities bring fainting on (eg. getting up quickly, coughing or straining on the toilet - increased abdominal pressure reduces blood flow to the heart).

Good Luck

Aussie Girl
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31mm Infiltrating duct carcinoma
Grade 3, ER/PR-, HER2+, Neg Sentinel nodes x 5
49mm field of DCIS
17 June '13: Screen detected impalpable mass, Mammogram neg, US.
25 June '13: Diagnosed after multiple biopsies and MRIs
28 June '13: Left lumpectomey
4 July '13: Left Mastectomy
12 August '13: Commenced TCH chemo
Mid December '13 : TCH finished. Herceptin continuing three weekly.
4 August 2014- Herceptin infusions finished.
END OF THERAPY - YAY!
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Old 08-05-2014, 03:08 PM   #6
SoCalGal
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Re: Chemo related syncope/vasovagl

If anyone turns on my drip too fast, I start to black out. Even if it's just saline.
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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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