| Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb | 
	 
	 
	 
	
	
	
	
	
	
	
	
	
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			06-19-2008, 03:15 PM
			
							
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			#1
			
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			 Senior Member 
			
			
		
			
				
			
			
			
				 
				Join Date: Jan 2008 
				Location: Madison Wisconsin 
				
				
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				Cardiac function, MUGA results
			 
			 
			
		
		
		
		Hi all,  
I just had my 3rd MUGA scan Tuesday. I am done with my 4 DD A/C and have 1 more of 12 Taxol/Herceptin tomorrow(6/20). My results have gone down each time. 72%,66%,63%. My dr assures me that my results are still good, but the decrease concernes me. I will start every 3 week Herceptin for the next 10 months and tamoxifin. Any one have cardiac issues? When did your doc get concerned? 
  
Cheryl 
		
	
		
		
		
		
		
		
			
				__________________ 
				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 
Tamoxifin for 5 years 
New left Boob-7/29/08
			 
		
		
		
		
		
		
	
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			06-19-2008, 06:30 PM
			
							
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			#2
			
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			 Senior Member 
			
			
		
			
				
			
			
			
				 
				Join Date: Dec 2007 
				Location: Avilla, Indiana 
				
				
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		 Cheryl,  
  
I share your concerns. I asked and found out anything above 50% is good/normal. My MUGA has dropped one point. My third MUGA will be scheduled in July.  
  
Your MUGA's seem great! 
  
Dana 
		
	
		
		
		
		
		
		
			
				__________________ 
				-Dana-  
  
] 
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% 
three wonderful daughters, a terrific husband, 
Life is Good
			 
		
		
		
		
		
		
	
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			06-20-2008, 08:28 PM
			
							
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			#3
			
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			 Senior Member 
			
			
		
			
			
			
				 
				Join Date: Apr 2008 
				Location: WA State 
				
				
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		 Cheryl, 
Recently I had my first baseline muga scan and the score was 55. I consider myself young and healthy and so concerned that my baseline score was low. But my GP and Onc Dr both tell me my score is normal. They say everyone's range is a bit different and not to worry. I should be having my first follow-up muga done soon and I will be so curious to see what the next score is.  
 
So I will wait and see. In the mean time, it think it's important not too worry too much about this. Take care, 
Cindy 
		
	
		
		
		
		
		
		
			
				__________________ 
				Cindy 
 
L/IDC, 1.2 cm, Stage 1, Her2+, ER+/PR+ at age 48 
4/15/2008 Lumpectomy + sentinel node biopsy  
Margins neg and Nodes neg (2 tested) 
MUGA score 55 on 5/6/2008 
 
Treatment starting 05/08/2008: 
 Chemo 4 cycles, 3 weeks apart with Taxotere & Cytoxan - Chemo - Done 7/24/2008! 
Herceptin for 1 year 
Radiation starting in 9/2008 
MUGA score 61.9 on 9/04/2008 
33 Rads with boost - Done 10/13/2008 
  MUGA score 58 on 12/01/2008 
MUGA score 59 on 3/16/2009 
Herceptin for 1 year - Done 4/27/2009
MUGA score 64 on 6/22/2009
All scans - NED 6/24/2009
MRI - NED 11/10/2009
All scans - Still NED 8/25/2011
Still NED 2024!
  
  I am calling this my pink journey 
Follow my journey into the pink at my blog here 
			 
		
		
		
		
		
		
	
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			06-20-2008, 11:20 PM
			
							
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			#4
			
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			 Senior Member 
			
			
		
			
				
			
			
			
				 
				Join Date: Apr 2007 
				Location: LA LA Land 
				
				
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		 I had a 2 d echo.  My december score was 60% and that was before herceptin began.  Last week my score was 70%.  I think it's the coQ10.  Or irony. 
		
	
		
		
		
		
		
		
			
				__________________ 
				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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			06-21-2008, 05:32 PM
			
							
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			#5
			
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			 Senior Member 
			
			
		
			
			
			
				 
				Join Date: Nov 2007 
				Location: Stony Mountain, Manitoba, Canada 
				
				
					Posts: 47
				 
				
				
				
				
 
	 
		
	 		
	
		 
		 
		
		 
		
		
	
		
	
	 
	 
			 					
		
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		 I had a baseline MUGA score of 62% and after FEC x3 ,Taxotere/Herceptin x3 and Herceptin x1 my score dropped to 42%.  I am off Herceptin now for good as CDN Standard of care states that a hold 2x means stopping Herceptin.  I am seeing the Cardiologist on Tuesday, the 24th so I will let you know what he says. 
		
	
		
		
		
		
		
		
			
				__________________ 
				Michelle Dick 
" Adversity Reveals your strength" 
  
Dx August 15th/07 
Invasive Ductal Carcinoma 
ER/PR- negative, HER2- positive 
Stage 11 with tumor size 3.5cm, .7cm satelite node 
Sx Oct 2nd/07 
Skin sparing mastectomy of left breast 
immediate reconstruction DIEP flap 
Nodes 0/3 Sentinal Node Biopsy 
Chemo started Nov, 3 rounds FEC and 3 rounds Taxotere and Herceptin every three weeks 
Radiation 28 Tx ended on June 13/08 
Herceptin was stopped due to falling MUGA score (went from 62 down to 42) 
Cardiologist Appt June 24th 
Ramipril 2x/d to protect heart and hopefully increase LVEF 
Officially NED
			 
		
		
		
		
		
		
	
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			06-24-2008, 10:15 AM
			
							
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			#6
			
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			 Senior Member 
			
			
		
			
				
			
			
			
				 
				Join Date: Jan 2008 
				Location: "Love never fails." 
				
				
					Posts: 5,809
				 
				
				
				
				
 
	 
		
	 		
	
		 
		 
		
		 
		
		
	
		
	
	 
	 
			 					
		
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		 I was diagnosed with mitral valve prolapse back in 1985 when I developed erythema nodosum (red dots on legs). 
My muga scan dropped pretty fast after chemo and weekly Herceptin, and we had to stop last December. 
I did some research and did find that in England, Herceptin was only given for 12 weeks (?) and the result is almost the same as the one year regimen.  Certainly the British government might have tried to justify it because of socialized medicine.   
  
At least one member had reported that she got her Muga score up by exercising.  You might want to try that regardless if you want to go back to Herceptin. 
		
	
		
		
		
		
		
		
			
				__________________ 
				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
			 
		
		
		
		
		
		
	
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			06-24-2008, 11:02 AM
			
							
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			#7
			
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			 Senior Member 
			
			
		
			
				
			
			
			
				 
				Join Date: Jan 2008 
				Location: Madison Wisconsin 
				
				
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		 I know that my numbers are pretty good, I was just concerned with the 10% drop. I will talk to my Dr. before I start the maintenence Herceptin. I am also trying to get a little exercising started. I just finished my Taxol last Friday, so I am taking baby steps. Thanks for the info! 
Cheryl 
		
	
		
		
		
		
		
		
			
				__________________ 
				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 
Tamoxifin for 5 years 
New left Boob-7/29/08
			 
		
		
		
		
		
		
	
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			06-24-2008, 02:54 PM
			
							
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			#8
			
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			 Senior Member 
			
			
		
			
			
			
				 
				Join Date: Nov 2007 
				Location: Stony Mountain, Manitoba, Canada 
				
				
					Posts: 47
				 
				
				
				
				
 
	 
		
	 		
	
		 
		 
		
		 
		
		
	
		
	
	 
	 
			 					
		
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		 Hello, 
I just returned home from the Cardiologist.  I will Never, ever have Herceptin again.  He says that since I have suffered damage that is it.  He feels that anyone with cardio risk factors should not take Herceptin.  I was a smoker who quit prior to surgery and STUPIDLY started to have a few again.  That is it for the smoking for sure!!!!  He also stated that there are 3 categories, 1/3 need a heart replacement, 1/3 never regain the lost function and 1/3 do.  I am one that may stay the same or get better.   Had I not been so stupid years ago and started to smoke I wouldn't be having this problem!!! 
All I can do is move forward. 
		
	
		
		
		
		
		
		
			
				__________________ 
				Michelle Dick 
" Adversity Reveals your strength" 
  
Dx August 15th/07 
Invasive Ductal Carcinoma 
ER/PR- negative, HER2- positive 
Stage 11 with tumor size 3.5cm, .7cm satelite node 
Sx Oct 2nd/07 
Skin sparing mastectomy of left breast 
immediate reconstruction DIEP flap 
Nodes 0/3 Sentinal Node Biopsy 
Chemo started Nov, 3 rounds FEC and 3 rounds Taxotere and Herceptin every three weeks 
Radiation 28 Tx ended on June 13/08 
Herceptin was stopped due to falling MUGA score (went from 62 down to 42) 
Cardiologist Appt June 24th 
Ramipril 2x/d to protect heart and hopefully increase LVEF 
Officially NED
			 
		
		
		
		
		
		
	
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			06-24-2008, 04:16 PM
			
							
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			#9
			
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			 Senior Member 
			
			
		
			
				
			
			
			
				 
				Join Date: Sep 2005 
				Location: Central Coast, CA 
				
				
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		 Belly dancer, 
Sounds like your cardiologist put his foot down pretty hard, but you know that this is for your own well being.  You are also right, all you can do no is keep looking forward!  I'm not sure I understood your comments about what the cardiologist said, but I do not think that the 1/3, 1/3 and 1/3 are statistically based statements.  I believe most women who have cardiac issues related to Herceptin do recover - but again, I'm not a doctor and I'm also not familiar with what other issues and risk factors you may have.  Think positive, and keep away from those nasty ciggys (easy for me to say, I know!). 
 
Carla, 
You are correct, your numbers are still very good. and are likely to stay that way.  Mine got down to around the mid 50's but then they also bounced back up from time to time while on Herceptin.  The best you can do is what you would "normally" do for a healthy heart - moderate exercise, eat well, etc.  i also took CoQ10 as many others do, I believe it helps.  And of course fish oil if you have no 'thin blood' problems. 
 
You should also know that the timing of the MUGA/Echo is important - especially once you are on the every 3 weeks Herceptin dosage you want to have the MUGA right before your treatment, not right after as the numbers do fluctuate and are usually better the further out you are from the treatment. 
 
Good luck, hang in there (both of you!) 
		
	
		
		
		
		
		
		
			
				__________________ 
				Chris in Scotts Valley 
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?" 
9/2004  Diag: Stage IV extensive  liver mets (!) ER/PR- Her2+++ 
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!  
04/05 - 4/07 Herception every 3 wks, Continue NED 
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial 
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin 
01/08 Progression in liver  
02/08 Begin (TDM1) trial  
08/08 NED! It's Working!  Continue on TDM1 
02/09 Continue NED 
02/10  Continue NED.  5/10 9/10 Scans NED 10/10 Scans NED 
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver 
07/11 - 11/11 Herceptin/Xeloda -not working:( 
12/11 Begin MM302 Phase I trial - bust:( 
03/12 3rd times the charm? AKT trial  
 5/12 Scan shows reduction!  7/12 More reduction!!!! 
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!) 
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3 
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc 
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go. 
2/13 Gemzar/Carbo/Herceptin - no go. 
3/13 TACE procedure 
 
			 
		
		
		
		
		
		
	
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			06-24-2008, 07:26 PM
			
							
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			#10
			
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			 Senior Member 
			
			
		
			
			
			
				 
				Join Date: Nov 2007 
				Location: Stony Mountain, Manitoba, Canada 
				
				
					Posts: 47
				 
				
				
				
				
 
	 
		
	 		
	
		 
		 
		
		 
		
		
	
		
	
	 
	 
			 					
		
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		 This Cardiologist has been studying the effects of Herceptin on the heart here in Winnipeg.  I am patient number 82 for him for just this reason.  He started to do his study in 2006.  The 1/3 comments were for women who developed heart issues.  The ones who require transplants are the ones with scores of 10%.  They also had other  underlying issues.  Thankfully I am healthy and my only risk factor was the smoking, which over time will heal itself as well.  I think that the point he is making is that he feels the damage is more substantial than they initially thought. 
		
	
		
		
		
		
		
		
			
				__________________ 
				Michelle Dick 
" Adversity Reveals your strength" 
  
Dx August 15th/07 
Invasive Ductal Carcinoma 
ER/PR- negative, HER2- positive 
Stage 11 with tumor size 3.5cm, .7cm satelite node 
Sx Oct 2nd/07 
Skin sparing mastectomy of left breast 
immediate reconstruction DIEP flap 
Nodes 0/3 Sentinal Node Biopsy 
Chemo started Nov, 3 rounds FEC and 3 rounds Taxotere and Herceptin every three weeks 
Radiation 28 Tx ended on June 13/08 
Herceptin was stopped due to falling MUGA score (went from 62 down to 42) 
Cardiologist Appt June 24th 
Ramipril 2x/d to protect heart and hopefully increase LVEF 
Officially NED
			 
		
		
		
		
		
		
	
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			06-28-2008, 11:33 AM
			
							
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			#11
			
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			 Senior Member 
			
			
		
			
				
			
			
			
				 
				Join Date: Jan 2008 
				Location: Madison Wisconsin 
				
				
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		 Thanks Chris- I have been taking the COQ10 and fish oil. I feel that besides the lack of exercise, I have done all that I can. Now I am trying to start back with the exercise, and hope the numbers stop dropping! 
Ps- How much COQ 10 are you taking? 
Cheryl 
		
	
		
		
		
		
		
		
			
				__________________ 
				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 
Tamoxifin for 5 years 
New left Boob-7/29/08
			 
		
		
		
		
		
		
	
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			06-29-2008, 08:46 PM
			
							
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			#12
			
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			 Senior Member 
			
			
		
			
				
			
			
			
				 
				Join Date: May 2008 
				Location: Oregon 
				
				
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		 I also had a drop in my heart fx after 8 months of herceptin. It went from 82% pre treatment to 54%. Since I was still above the 50% mark, I had 2 more herceptin infusions and then another MUGA. This time it went up to 63%. 
  
Chrisy, I am interested in what you said about the timing of the MUGAs. It there a study or any articles about that? I know it is true for me. When my ejection fraction was lower I felt very different. A cardiologist friend said the heceptin stresses the heart cells and they don't contract the way they should to get a strong heart beat. He recommended to still exercise but not to stress my heart (so no sprinting in the swimming pool like I used to do). I'm just trying to chill out and get through the next couple infusions but that's not very easy-just want to get past this part and get that pesky port out. 
  
Henny 
		
	
		
		
		
		
		
		
		
		
		
	
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			07-02-2008, 09:39 AM
			
							
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			#13
			
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				Scores can be a bit jumpy
			 
			 
			
		
		
		
		Hi: 
 
I read your post as someone who has had a slew of MUGA's/Echocardiograms since diagnosis back in 2002.  Back in '02 my doctors never did a baseline MUGA.  So I'll always wonder about that issue. 
 
Anyway, my scores of late haven't been the best.  Going back a year or so my score was 51.  That didn't sound promising.  Then my doctor began scheduling echos every six months and naturally, continued me on Herceptin.  Next echo was approx. 56!  Tired as can be but test score is showing improvement.  I am beginning to feel a bit puzzled. 
 
Friday I had another echocardiogram.  Was feeling quite tired from a hectic morning so decided not to chat with the tech, just to lay down and attempt to rest.  Scored in the high 60s!  I'm sure this will amaze my oncologist. 
 
All I can suppose is that the heart is very sensitive to outside stimuli.  Maybe we should all try and relax as much as possible when getting these tests (assuming, of course, that you want to continue on Herceptin).  I suppose if I wanted off I could just say so, but I feel like that would be like pulling the plug on my life support system. 
 
Start Tykerb soon due to treated brain metastasis. 
 
ML 
		
	
		
		
		
		
		
		
		
		
		
	
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			07-04-2008, 03:55 PM
			
							
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			#14
			
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		 Thank y'all for posting good results of 'recovered' Muga score. I was forced to quit Hercepting because of decreased heart function. Guess I really need to get on the exercises (been talking about it, but still haven't done it...) regardless if I will be resuming Herceptin. 
		
	
		
		
		
		
		
		
			
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				Last edited by Jackie07; 07-06-2008 at 07:03 AM..
				
				
			
		
		
	
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			07-07-2008, 08:48 PM
			
							
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			#15
			
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		 First post here.  I had my 4th MUGA a week ago.  My first one was 67, then 65, 64, and this last one was 54, so a big drop in 3 months.  I've noticed I've put back on some weight (I deliberately lost some weight - not chemo induced loss), and my blood pressure was very high when I had my Herceptin/Zometa tx today.  We're doing another scan in 6 weeks and see what happens.  I'll have been on Herceptin a year in September, with no side affects at all.  I'm stage IV, so I've been enjoying only doing the Herceptin and Zometa rather then chemo - I'd like to keep doing that for a while longer. 
  
Interesting what someone said about the timing of the MUGA scan, and how maybe stress can effect it.  I was stuck 3 times to inject the binding agent, as the 1st 2 infiltrated, and twice for the isotope, the first of which infiltrated.  I was just a little bit stressed after that one, to say the least!  I was worried about them ruining the veins in my good arm/hand.  Perhaps it was a contributing factor?  Who knows.  Just hoping my next scan isn't lower.   
  
I've been a bit slack about exercise and diet for some reason this summer, so it's time to get motivating again, I guess. 
		
	
		
		
		
		
		
		
		
		
		
	
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