Herceptin Heart Attack

Went for a follow-up visit with my cardiologist.  She says I look great and gave me the preliminary go-ahead to restart Herceptin.  She ordered an echo, and as long as there is no further decline she says I am good to go.  What the heck? I thought it was done for me. Now I am waiting for my MO to call and give me his opinion/decision.  Is there a window to get back on? 

Background - I had my 12 weekly doses and the first of the doses that I was going to get every three weeks. My EF dropped from 60% to 53% and they pulled me.

Initiation of my chemo/herceptin was delayed by 6 months b/c of misdiagnosis.  I thought it was too late to start it anyways, but the oncologist at MD Anderson said women in the initial trials jumped over to start it later than that and still showed benefit.  So, she recommended I go ahead and do it.  So perhaps it isn't too late vball.  It will be interesting to see what your onc says.  I think, though, that after a gap of 8 weeks you would have to start up with a loading dose again. 

Good luck VBALLMOM.  How many Herceptins were you able to get in?

vballmom:  Hope you see changes soon!  Quiet blog here.

TonLee:  How's the back feeling?

Hi everyone. It's been six months since finishing herceptin and I see the cardiologist on Thursday. Anyone have any questions I should ask? I don't think I am getting an echo. She said we'd wait until a year out I think. I am okay with that. If I pushed her, I think she'd do it now. I think she doesn't want me asking about stopping the meds yet if my EF improved. Not sure how much purpose there really is in the visit without an echo. So funny, there is a site where I can logo on and see my appointments and all my test results and such. So I got an email on that reminding ing me of my appointment on Thursday. I also got a phone call about it. I also got an email to y regular email telling me to log onto my account and view the new email I had there. Now wound't you think it would just be easier to email me the reminder rather than emailing me to go read. An email on another website. LOL. It is just crazy.

Arlene, my BP is nice and low, maybe even a little too low, but my heart rate is all over the place on the equipment at the gym even on the beta blocker!  I guess that is something to ask the cardiologist about.  It can go from 60 striaight up to 150 to 200, down to 110, back to 60, up to 200.  I do break out in a gigantic sweat which I never did before.  It seems like right after that, it goes down.  It's crazy.  It's not one time, it has been doing that.  I wonder if it is my LE sleeve and glove making the readings incorrect.  I will report back what she says about it.  I would like to try it without the compression sleeve and glove to see if it still jumps all over the place like that, but don't want my arm to swell up like a balloon. 

vballmom, I tried researching the infusion time question and did not find good, hard evidence to say slower infusion is better.  However, that doesn't mean it isn't.  It just means they aren't spending the $ on research to answer that question.  I've read enough anecdotal stories on bco about symptoms being less severe with a slower infusion time, that it just plain makes sense to me that a slower infusion time might very well reduce the risk of heart damage.  It certainly isn't going to hurt you to do it slower.  So, I say if it would make you feel better to have it done slower, explain your fears to the MO, that you know there is no hard evidence, but could you have it slower to make you feel better about it mentally.  I talked to my onc about doing the infusion slower and also doing it weekly, openly saying I know there is no evidence for either, but would it be ok?  He knew it gave me more peace of mind, so he let me.  There's a lot to be said for peace of mind.  If your MO says it is ok, the nurse can shove it and do what the doc says.  (sorry, kind of in a mood tonight)  However, if you would rather do it in 30 minutes to get it over with fast, then you could make that argument, too, since there is not any good research on this, at least not that I could find. 

I did find this one small study (18 patients?) saying 30 minutes is fine.  That's not a big enough study to tell anything.  However if you are looking for studies this is the only one I found:

http://www.ncbi.nlm.nih.gov/pubmed/20948250

I also had this commentary bookmarked, but the link is not showing what is there any more.  It may just be a temporary website glitch, so sharing it just in case (the first link is just the pub med citation): 

http://www.ncbi.nlm.nih.gov/pubmed/18539615

http://annonc.oxfordjournals.org/lookup/pmid?view=long&pmid=18539615

I don't recall the discussion being anything definitive. 

Good news.  My most recent echo was 63%, up from 54%!  Very happy with that result. I'm waiting for my Herceptin as we speak.  She did slow it down for me last week.

That is great news Vballmom.  My recent echo showed that I was stable at 45-50%. That is up from 40-45%. I think the cardiologist wants to graduate me to every 6 months now.  He didn't really seem to care about me any more.  I guess that is a good thing.  Stable is good.  I am sure they will get more vigilant if/when I have to change back to a Herceptin like chemotherapy. For now, the ones I am on seem to be working.

Wonderful news Camille! As good as it gets .

Been following Dr Deanna Attai on Twitter. Anyone have her as a BS? Interesting chat last night . Have no idea how to enter or the protocol but read the transcript . Subject mets.

VBall - praying for you too!  I have been doing herceptin since May 2011.  Started weekly...then in Sept '11 after NED from the TCH...went to every 3 wks.  EF dropped in July '11...saw cardio guy....all was good, came back up on it's own.  Lastest MUGA was last month...was a drop, but not enuf to stop Herceptin.  I have been doing the 30 min drip.  No se's.  Scheduled for 6 mos PET 1st week in APRIL.  Have herceptin day before the scan.  So we will see.  My onco wanted to keep me on herceptin 3 years...this May will be 2 years.  I'm afraid of having to stop it...but at same time...feel lucky to have made it this far...especially after reading the problems many of you have had with it.

Love, prayers, positive healing energy to all!!

Thanks, Kay!

Ashla, good stuff.  I think so many of us could benefit from early intervention with a cardiologist. I wonder if it will eventually become standard of care.