Herceptin Heart Attack

TonLee

Went for my MUGA today.

Pretty sure there isn't any improvement.  Will get results next week.

At this point, considering the latest data, I'll take "stable" over a drop in EF!!  Will update when I get the info.

bcbarbie10

Good luck, TonLee!🙏

Omaz

Good luck TonLee!

TonLee

Thanks!

ArleneA

Good luck TonLee!  Keep us posted.  I go for another Echo on Monday! 

Thanks for pan information Omaz. Will be looking for those this weekend.

Denise-G

I am seeing a Cardiologist for Herceptin heart damage, so I gave him a copy of the article/study. 

He sees quite a few former BC patients that have heart damage.

My Oncologist said not many Cardiologists are aware of all of the heart problems related

to Chemo drugs and Herceptin. 

ArleneA

My onc sends me for routine MUGAs but now I'm asking for Echos to keep the poison level down.  Mine is going back up and hoping Monday's ECHO shows the upward trend.  Back up to 65...so hoping no downward spiral!

MemaSue56

Arlene - good news that your MUGA shows up trend.  I've had only one echo...all good...but still get MUGA...still good...in the 64% range.  I'm 17 mos into herceptin.....Sept 2012 scans still show NED...so am hoping no sudden changes for me.

TonLee - good luck and lots of positive energy heading your way!

I am now on the Addy list.  Thank you for sharing the link.  I think it is a wonderful idea!

Prayers and Positive Energy to all!

dancetrancer

Best wishes TonLee!!! 

ArleneA

I think finally my echo will take place tomorrow.  First one, I rescheduled and the second one the machine went down.  This one is a 3D Echo which I don't think I've had before.  Supposedly more thorough.

TonLee

Good luck Arlene...let us know the results!

(Mammo for me tomorrow...happy happy joy joy)

Omaz

TonLee - Did you get your results yet?  I'm hoping for improvement.

TonLee

I haven't got the print out yet....but the phone call was no improvement...even a few point drop (but I'm accounting for a different radiologist reading it...so not concerned.  I will get the print out tomorrow (if I remember to go by and get it!)...I was going to wait to update then ... so I could have actual #s.

I'll let ya know

TonLee

So I went to get the hard copy of my latest MUGA.

Seems the person I talked to on the phone must have read it wrong (which was easy to do because they listed all my ejection fraction #s for the last 5 MUGAs.)

So I'm up to 54%..."minimally increased" but I'LL TAKE IT!

I'm just glad to be up above 50....I hope this is a trend....even though I was told last week my heart will "likely" not improve.

Don't lose hope ladies.  I don't care what the doc says....my heart is getting better!  I insist on it!!

Omaz

Whoo Hoo TonLee, that's fantastic!!!

dancetrancer

TonLee - that is the best news ever!!!!  So freakin' happy for you!!!!  

bcbarbie10

Yoohooo!!!!!! So happy for you, TonLee!!!! And hopeful for the rest of us!!!!

Denise-G

Thanks for the hope.  Mine is 39 and praying someday I can get to 50!!!!

ArleneA

HOORAY TonLee.  There is hope!  You must be ecstatic.

Good luck Denise....

mbf

I've read most of this thread and am a little concerned... I have had 7 doses of herceptin, had a MUGA scan prior to start of treatments, then one after the first 3 months.  If I remember correctly the first one was around 67, the next one at 64, so I figured all looked good.  However, my next appointment with my MO isn't until March and I don't have a MUGA scan scheduled before that, which means I go at least 6 months between scans.  The only thing I notice that has remained since after chemo stopped (which makes me think it's a side effect of herceptin) is when I try to take a deep breath it gets "stuck" a lot (not all the time).  "Stuck" like when you try to take a deep breath on a hot humid day and can't.  Does anyone else have this?  I have tried getting back to my exercising by walking almost every day and am very winded when I try to walk at a good pace - probably because I'm just out of shape and need to get some stamina back but I don't want to make light of things if I shouldn't.

Omaz

mbf - For the year I was on herceptin I had ECHO's every 3 months.

Jennt28

mbf - the drug company's official recommendation is 3 monthly monitoring. I would phone your MO's office and ask for a test to be scheduled appropriately...



Jenn

TonLee

I agree with Jenn and Omaz.

The manufacturer recommends being monitored every 3 months while actively on Herceptin, and once a year for at least TWO years after completion.  (Though there is a new study out showing that women are having heart issues from Herceptin 5 years out and it doesn't seem to have a plateau yet.  So those recommendations for yearly monitoring will likely change to 5 or more in the near future.)

A lot of Docs blow these tests off for whatever reason.  It pisses me off.

ArleneA

MBF, I also was tested every 3 months while on Herceptin and did MUGAs (and a few Echo's).  Please check with your onco.

Hi everyone!

mbf

Thanks everyone - I guess I need to make a call!

I hope you all have a great day!

GrandmaV

mbf, I had to remind my onco, until my cardiologist took over the scheduling for my echos.   

mbf

I notice several of you have a cardiologist in addition to MO... I only have the MO - is that because I have not had any heart issues? 

TonLee

MBF,

The Herceptin heart issues are the only reason I have a Cardiologist.  I don't think most women require one since they don't have problems with it. 

mbf

Thanks TonLee - that's what I thought.

jittersmom

I had heart issuse before BC so that is why i have a cardiologist. I am almost done with my herceptin and so far all my echos have been good.