Herceptin Heart Attack

Hi Arlene...I do remember now.  Sumtimes my I suffer from chronic 'mushmind'.  heehee.  Like...hey...I jes wrote a f'n journal on the TP thread.  I cwack meself up ALOT lately!!  If ever you get back this way....lemme kno...we'll try to get together...k?

Past my 'get in bed time'...take care all!

I had an early MUGA today (last Docetaxol yesterday) as MO said yesterday that she would hold off on Herceptin dose until I had a MUGA as I was experiencing shortness of breath.  EF has dropped from 67 to 55 and I was told today that they would not give me Herceptin and I need to see a cardiologist now.

I have not read through all the posts on this thread so apologies if this question has already been answered.

What is the risk of stopping Hercepton so early during the treatment (I have only had three (tri weekly))?

Vballmom- wow 63% that is wonderful. I am glad that you recovered during your holiday and that you are able to start again.  I hope that you will be able to continue with the Herceptin treatment. It is good news that your heart was able to bounce back after a rest.  

Shikari- 55% is still considered normal. They might put you on an ace inhibitor (like lisinopril) and a beta blocker just to be proactive and to try to prevent any further fall in your EF.  I got almost all the way through my year of Herceptin treatment before I had to stop.  I still have a EF of 45% after over a year off of Herceptin.  Everyone is different.  It is good that you are getting a consult before things go south.  Hopefully your EF will remain stable.

TonLee, your photo is stunning!



Alice, I went from 65 to 45 with six months to go, and I finished the full treatment. I went on an ace inhibitor and a beta blocker (am still on them). Six months after finishing treatment, I am at 50. The onc and cardiologist followed me closely, and were going to do all they could to get the full treatment in.

Hi TonLee and Kay

Thank you so much for your feedback over the past few weeks when I have been worried about the effect of Herceptin on my heart muscle re slight thickening.

I saw the onc today and he said that my LVEF is 68% and I have a strong heart - the heart of an ox! Neither was he worried about my kidney function (65. Top of range is 70 in the UK measurement scale). Said he thought would improve after the end of Herceptin. Dito lymphocytes.

He is happy for me to continue Herceptin so 13/18 done. Just 5 more to go!

Thank you again

Alice

I talked to my sister in law (an MD in PA) who 10 years after chemo (not breast cancer), she developed an EF problem.  She is stable at 45%.  Now she says that the gold standard for EF is the MRI.  She has hers done at Cleveland Clinic...guess there are some excellent cardiologists with excellent backgrounds in heart toxicity from chemo.

Why are we told the MUGA is the gold standard?

Now, my cardiologist says he(re) reads all of these tests!  I sure don't know!

What I meant by this was he doesn't rely on the radiologist but reads the tests himself. 

Well, I am just glad he takes the time to read these tests after the radiologist does.  I had my Echo yesterday and will see what it shows next week.  My onco sees no need for Echos every 6 months.  She says once the numbers come back up from the Herceptin, they don't usually go back down unless there is something else wrong with the heart but not from the Herceptin.  If that is the case, why are they now saying to monitor us for 5 years. 

I asked the technician about the MRI versus the other tests and he said he was always told MRI was gold.  I'll inquire of the cardio next week.

I saw the cardio today and I'm still right at 65.  Not having another Echo for a year.  Now, he brought up the MRI before I could mention it and says it is definitely GOLD.  He says we have no facility in our area (and many areas) that do the heart MRIs.  He says they are a VERY detailed and precise test.  My SIL has hers done at Cleveland Clinic (a cardio with a specialty chemo heart toxicity).  Guess Cleveland is pretty tops too.

Now, I mentioned that my last blood work showed a very slightly high Calcium level and he said this is an oncologist issue and something my onco should have addressed because it could be something serious.  I asked him if the HCTZ BP medicine I'm on could cause it and he said absolutely so guess I need to get it changed and see if in goes back down.  He hinted that elevated Calcium could be cancer but everything I've read says it is rare.  Goodness!

Thanks Alice.

My MO said the study was too small for him to be concerned about.  I haven't seen anything new.  I've been on an ACE Inhibitor since December.  My EF went back up, higher than I started out, and I am back on Herceptin.  So many things to worry about, I know.  Hugs.

Leftfoot:  I too read that Ace's increase risk of BC.  I was on it for years but no longer take it.  Most cardiologists love the Coreg to improve EF.  Betas provide protection for the heart.  I'm off the betas I didn't like the way they make me feel and after 6 months, my EF is still good.  There are a few of us here who didn't finish Herceptin (I made it through 10).  I've never heard about Al's increasing your risk for reoccurrence.  I'm at nearly 2 years on the AL. 

Wow....lots here to comment on. 

1st - Arlene I would love to meet you.  I will b in Vegas on June 4 for tx, then am leaving for TX the next day, coming back to Vegas the following Monday.  So guess it's Tues the 4th or Monday the 10th?  Let me kno if either works for you.

Ref the LVEF, MUGA vs MRI.  1st, wow on the MRI being gold and the fact that not many places have tech to do the heart MRI.  Arlene - I have NO idea about Vegas and Dr LaMothe...sorry. 

It's been 2 years for me...I started herceptin May 23, at 1st every week, and then/now every 3 weeks.  My onco wanted to keep me on it for 3 years.  Yes I kno...I have read and researched also and she even admits there is NO evidence of it working at 6 mos and on out.  My LVEF took a serious dip during my CTH chemo summer of '11. Enter Cardio, Dr LaMothe, after doing a few others tests, he was not concerned and gave OK for continued herceptin.  So, all these many months later and with MUGA's every 3 mos, my EF rate is down 12, but still over 50%.  Onco still not stopping herceptin yet.  Since EF improved on it's own in '11, she will wait til next scan (May29) and if no improvement will probably stop herceptin.  Which frankly, scares me to death with my dx.  BUT....I feel so blessed to have been able to tolerate it all this time as I kno so many of you have not been able to.  AND the fact that those of you who have stopped the herceptin seem to be doing really well...so that is very encouraging for me.  And even tho the EF is down, my 6mo PET this month shows NED.  WooHOO!!

I too have been on AL's since Sept '11...I had not heard this latest about increase of recurrence.  Nor do I kno anything about ACE and BETA as I haven't been on either...I don't think anyway...will have to keep my eyes open on this topic.

I am so amazed at all you beautiful ladies and the strength/knowledge you possess and how wonderful you are at sharing everything!

Love, prayers, positive thoughts to all,

Sue