HonCode

Go Back   HER2 Support Group Forums > Herceptin / Tykerb
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb

Reply
 
Thread Tools Display Modes
Old 04-18-2015, 07:38 PM   #1
marion vardy
Member
 
Join Date: Apr 2015
Posts: 6
Herception

I TOOK 4 rounds of herception and was stop because i had heart issues
my function went down to %37 and it will soon be a year and my heart function has not come back up..did this happen to anyone else
i am in belief now that the muga scan numbers was wrong ,Heart doctor dont understand it because herception dont cause permited damage
marion vardy is offline   Reply With Quote
Old 04-19-2015, 09:21 AM   #2
Lucy
Senior Member
 
Join Date: Oct 2014
Posts: 293
Re: Herception

Marion, Were they screening your heart throughout the process? If so, where did it start because I was told if it fluctuates by 10% they stop treatment. Also, I was told it typically is not permanent, which suggested to me that it can sometimes be permanent. I'm sorry this is happening to you but I hope that you can get better news and/or help for this.

hugs
Lucy is offline   Reply With Quote
Old 04-20-2015, 07:57 AM   #3
LaDonna28
Senior Member
 
LaDonna28's Avatar
 
Join Date: Aug 2014
Posts: 78
Re: Herception

Marion,
I have also heard that although the majority of time your heart 'goes back to normal', there are some rare instances where that is not the case.
Maybe you can get them to recheck it again.
I have until August before I am done with my year of Herceptin. I have to REMIND the Dr. every 3 months about the echo. Currently waiting for my last results.
My thoughts and prayers are with you!
__________________
Steriactic biopsy July 2011 for microcalicificarions - negative
Mammogram 2012, 2013 no change
Mammogram July 8, 2014, more microcalcifications and mass (10mm per radiologist)
Diagnostic Mammogram July 10, 2014
Steriactic Biopsy July 15, 2014
July 21 given diagnosis DCIS and IDC upper, Outer quadrant of right breast
ER Pos >95%. PR Pos 90%, HER-2-neu positive (score +3) Grade 3
Breast surgeon on July 29, 2014 says 2 cm
MRI states only mild to moderate bilateral physiologic background parenchymal enhancement with uptake on intermammary nodes
BRCA tests all negative :)
August 8 port placement. Lung partially collapsed. On oxygen until further notice
August 9, '14 started TCPH therapy with nuelasta shots. 6 cycles @ 3 weeks
5th treatment T and C dosages lowered due to bad neuropathy
6th and last TCPH changed to PH only for Dec 1st
Lumpectomy and node biopsy Dec 2
100% complete response from TCPH neoadjuvent therapy: tumor completely gone-dead cells only. Node completely free of ANY cells. Staged at 0! Margins clear from 4mm-10mm from dead cells.
2 week period following surgery went in for draining of Hematoma that filled surgery void area in breast 3 times
Continued with Herceptin only December 22, 2014 @ 3 weeks until ???
Started radiation Jan. 7, 2015 plan is for 16-20 rads
january 25th 2015 last radiation completed. Stopped at 16 due to Seroma (void in breast is filled with fluid)
January 30 Tamoxifan started
Still on oxygen, tamoxifen side effects kicking my butt. Seeing a gastro dr. due to a lot of stomach issues.
July 2015 - 3D mammogram nervous as all hell - but came back clean!!!! YEAAH
March 2016 - only using oxygen at night! Stomach issues better and trying to wean off the heartburn meds. Am hoping to get reconstructive done Jan 2017.
LaDonna28 is offline   Reply With Quote
Old 04-20-2015, 08:57 AM   #4
Becky
Senior Member
 
Becky's Avatar
 
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
Re: Herception

What kind of chemo did you receive. Some chemo drugs affect the heart and that damage may not rebound. What were you echo or mugas starting out? Also, this may just "be you" and may have occurred anyway even if you didn't ever get cancer. Were you advised to see a cardiologist? If not, you should.


Hugs to you
__________________
Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
Becky is offline   Reply With Quote
Old 04-20-2015, 09:18 AM   #5
Rolepaul
Senior Member
 
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
Re: Herception

Less than 5% of the time there are heart issues of this type. If you are heavy, have prior heart issues, have high blood pressure, or high cholesterol, then there is a chance that this might occur. It is very unusual, but not unheard of. Do you feel more tired walking than previously? Are you dizzy when you stand up? Is your blood pressure higher than previously? High blood pressure is found to be a potential factor for Herceptin to cause Muga decline. I would discuss this with a specialist.
Rolepaul is offline   Reply With Quote
Old 06-13-2015, 01:56 PM   #6
marion vardy
Member
 
Join Date: Apr 2015
Posts: 6
Re: Herception

My heart function was at 47% before i started now its down to 34% and never came back up.My heart doctor is in believed it was never at 47% .So now i am with hell the herception because of the number .I DID HAVE A LOT OF HEART ISSUES i had a aorta surgery in october and found out while doing test for heart ,that i had breast cancer.So i then start chemo and herception in january.
I WAS NOT monitor till i was finish my chemo 4 rounds of chemo.with herception.4 months after i had a muga scan and it was down to 34%.and never return back up.My ? is anyone had to stop herception and if so how are they doing.Another ? is i am in believe now that with all my heart issues was it the right choice to take herception ,i was suppose to have 18 1 every 3 weeks.and s there another drug that i can take if herception was stop .mY BREAST cancer was H2R POSTIVE AND BREAST REMOVED
marion vardy is offline   Reply With Quote
Old 06-14-2015, 01:31 AM   #7
Jackie07
Senior Member
 
Jackie07's Avatar
 
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
Re: Herception

Hi,

I also had to stop Herceptin after just 4 weekly ones following 18 weeks of TCH. Was told that treatment had to be discontinued either when the score was below 50 or had dropped more than 10%。 That was 2007-8, and so far I have not experienced any cancer or heart issues.

Your MUGA was quite low to begin with. Did you have any heart issue before cancer diagnosis? I was found to have Mitral Valve Prolapse before undergoing brain (tumor) surgery in 1990.

Remember to eat well, exercise regularly and get plenty of sleep. (Watch for swollen ankles/knees.) Things will gradually get back to normal. Sending you good vibes.
__________________
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

Last edited by Jackie07; 06-14-2015 at 01:35 AM..
Jackie07 is offline   Reply With Quote
Old 06-21-2015, 12:12 PM   #8
Mtngrl
Senior Member
 
Mtngrl's Avatar
 
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
Re: Herception

Dear Marion,

As others have said, that was a low initial ejection fraction. Your health care team must have thought it was worth a try, and that the benefits would outweigh the risks. Sorry it dropped so low.

Paul's advice to see a specialist sounds good to me. Talk to your primary care provider about a referral.

And, as we said in your other thread, there is no targeted treatment for HER2 that does not carry a slight risk of heart damage. Our cancer makes a huge amount of extra HER2, so Herceptin and other drugs go after that. The heart has a lot of HER2 protein. The drug can't tell "good" HER2 from "bad."

Amy
Mtngrl is offline   Reply With Quote
Old 08-01-2015, 03:51 PM   #9
DOlson
Junior Member
 
Join Date: Jul 2015
Posts: 1
Re: Herception

I was diagnosed with stage 4 breast cancer mets to the lungs in 2007. I was HER2 positive, estrogen & progesterone negative. I had a double mastectomy and treatment with Taxol, Carboplatin, and Herceptin for 8 months. I continued to have Herceptin every 3 weeks since then. My lungs mets went away within 3 months after treatment by CT scans. I'm thinking about stopping my Herceptin every 3 weeks since I've been on it for 8 years now. I was wanting to know if there are any others out there that have been on Herceptin as long or longer than myself. I'm worried about long term side effects that are unknown from Herceptin. Thanks for help.
Donna
DOlson is offline   Reply With Quote
Old 08-03-2015, 04:16 PM   #10
Mtngrl
Senior Member
 
Mtngrl's Avatar
 
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
Re: Herception

Dear Donna,

Yes, there are a few people who have stopped treatment and stayed NED. Why don't you ask your healthcare team about stopping treatment and seeing what happens?

Amy
Mtngrl is offline   Reply With Quote
Old 08-15-2015, 05:53 PM   #11
marion vardy
Member
 
Join Date: Apr 2015
Posts: 6
Re: Herception

yes i did have a lot of heart issue before cancer and No i was not monitor till the first 4 round of herception and chemo was finish
marion vardy is offline   Reply With Quote
Old 08-15-2015, 05:56 PM   #12
marion vardy
Member
 
Join Date: Apr 2015
Posts: 6
Re: Herception

no i was not monitor till i finish my chemo
marion vardy is offline   Reply With Quote
Old 11-01-2016, 10:50 AM   #13
Lifesjourney
Member
 
Join Date: Oct 2016
Posts: 8
Re: Herception

Hi...I have received 8 Herceptin, 5 of them with TCP. I have low blood pressure regularly as well as essential tremors. The Herceptin is causing my bp to bottom out, tremors have increased substantially. I had bmx and pathology came back with no cancer cells and no lymph involvement, TCHP did its job. I have read on forums that Herceptin works well for some and then some still have recurrence after full Herceptin. My Onco said she did not see why I cannot work during Herceptin only, I am a mess with low bp and tremors and I must return to work.

Has anyone else had to stop half way through due to SE's?, if so, how are you doing? I am terrified to stop but I am unable to function properly and I believe Herceptin has cumulative effects. Any feedback is greatly appreciated.

Thanks so much!
Lifesjourney is offline   Reply With Quote
Old 11-01-2016, 04:05 PM   #14
Whonoze
Senior Member
 
Join Date: Oct 2008
Posts: 41
Re: Herception

I'm in the same wonderful situation. Have been on Herceptin since January 2007. I think about going off but don't want to risk it. My heart has been holding out so far.

My onc leaves it to me, without any real input.
Whonoze is offline   Reply With Quote
Old 11-01-2016, 04:06 PM   #15
Whonoze
Senior Member
 
Join Date: Oct 2008
Posts: 41
Re: Herception

Sorry. That was intended as a reply to Donna's post.
Whonoze is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 04:50 AM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter