Herceptin Heart Attack

Odd TonLee:  I haven't noticed any fluid build up.  Tired...I wish I was because I still barely sleep at night.  I'm switching soon and going to MD Anderson and see if I can find an onc I really like.

Omaz: Interesting. 

Wow Kay:  I'm surprised they'd start you back when you are below 50.  The three oncs I've seen all say stop if below 50.  I'm sure they'll be watching you every so closely and you get to the 18 treatments of Herceptin which will be such a relief and then the building back up of the heart!

Kay:  How many Herceptin Treatments have you had so far?  Since I passed 10 that might be the reason they aren't as concerned.  Plus they all keep saying, we'll you have itty bitty cancer since it is Stage 1A but with being HER+ that changes things.

I wish you luck and health!

Arlene

Good luck tomorrow Kay!

Sadly, I've started to feel symptoms of the low heart function.  While doing my walk the other day, I found it a lot more difficult and I'm now having heart palpitations and just weird feeling in my chest. 

Onco called today to reschedule my appt since I haven't seen the cardiologist yet.  Geez! 

Hope all goes well with your Herceptin tomorrow.

Arlene

Enjoy your break from it Pan....sorry it makes you ill.  I never have any SE's from it so this is so odd to me.

I'm on a break too but we'll see how that all goes. 

Happy Holidays, Merry Christmas Everyone!

Dear Pamonymous,

Maybe our bodies know when we should take a break.  Everyone is different.  Someday I am guessing that MD's will prescribe length of treatment and type of treatment based on the genetics of the person but we are not there yet.   

Wish they could at least get more data on deciding what the length of treatment for herceptin should be.  But that probably takes years

I discussed some of these issues with the cardiologist who has actually published on herceptin and cardiac issues.  He said starting  beta blockers can initially cause fatigue when first taken but then fatigue stabilizes.  When I asked him about Troponin he said he would start measuring it 6 weeks after I have restarted Herceptin.  He said that Troponin measuring was reasonable but did not sound like he was all that enthused about it- said he was "agnostic" about measuring.   He wasn't that concerned about restarting herceptin since he said my EF was still within normal limits ie above 60.  My EF dropped 19% so my onc stopped it when it was at 62.  She is now probably  planning to restart once they do an echo today and see what the EF is.  One thing I would like to suggest.  If you are getting repeat echo's , try and get the same MD to read them and EF.  This will improve any chance of reading and numbers of EF  being off because other MD's are reading them.  My onc facilitated having the same MD read the echo so this reduces EF error.   Normally, whichever MD is at the cardiac clinic reads the echo.  

Does anyone have a left bundle branch block?    I developed this , never had it before.  He said herceptin might have caused this and it maybe resolved after no more herceptin. .  They also said It seems I  had a small heart attack ( showed up on tests- stress echo,  Myocardial Perfusion test).  I had no symptoms of heart attack.  It could also be from an artifact and is not real. Oh well, one day at a time.  This cardiologist did not think I should have an angiogram and the other cardiologist said I should.  Have others on this list been told to have angiogram?   

He said that symptoms of heart disease and coronary blockage can sometimes be more subtle in women.  My only symptoms have been more fatigue with chemo/herceptin and feel like I am more conscious of  needing to get air but don't really feel that short of breath, and achiness in chest area at times.  Do others have this type of symptom?  I know this type of symptom can be indicative of either beginning congestive heart failure or coronary heart disease ( blockage of arteries).

The one cardiologist said that chemo drugs and herceptin could "unmask" or aggravate an existing problem if one had narrowing of arteries.  In my case, I think they are having a problem figuring out if this is all due to chemo and herceptin or some other problem that was there and herceptin making it worse.   Thanks everyone for sharing.  I think we learn from each other. 

Serenity wisdom, your EF does soun high. It is 62? Mine was only 65 before any chemo. I thought that was supposed to be good. It stayed there until that echo that was 45 and the echo on Monday was just about the same at 47. The cardiologist said that she thinks it hasn't changed, but that the pictures were better to get a better reading. She has read all the echoes i've had. She told,e I will be on the beta blocker and ace inhibitor for life even if my ejection fraction goes back up. I will be getting blood tests before each herceptin in the future to check the Troponin and probnp. If either of these go up, I won't get herceptin. She said they've found these to be better indicators of damage to the heart muscle than echos. I am back on the every three month echo schedule unless there is a problem. I will see the cardiologist again in three months. She is fine with exercising, but says to stop if I feel out of breath or anything. She did tell me to take 4000 mgs of fish oil. I think that was about it. She said getting back and finishing the herceptin gives me the best chance. She said people walk around and lead normal lives with ejection fractions of 45. She also said most people with the heart issues from herceptin either have their function get better or decline to a new level and then stay at that level. She said it is very rare to get a further decline.



I was mistaken about the herceptin. It was number ten I had today. All went well with it.

Wow that is some crazy stuff. I hope e erything normalizes soon. What was your EF? I can imagine how that scares you. Not sure why, but something about the doc saying staying on the herceptin gives me my best chance kind of made me nervous. I almost said my best chance of what.



I did have multi focal rumors, one large tumor and lymph nodes, not sure how much that plays in them wanting to get me to have the max herceptins that I can.

Hi all,



I had my baseline GCBPS today to see if my heart is healthy enough to even start Herceptin (due on the 12th Jan). The report goes straight to the MO but I managed to "chat them up" and they did tell me it's looking good and my LVEF should come out around 65.



serenitywisdom: I signed up yesterday for a simple blood collection clinical trial at my hospital where they are collecting bloods from women starting Herceptin and doing a biomarker study to see if they can work out how to identify women who will or won't get the cardiac issues. This small trial is being run here in Australia by my own MO :-) So maybe in the future they will be able to tell up front!



regards Jenn

JennT:  That trial is awesome.  Hopefully we'll see more of these trials in the near future.

marje - I am two weeks behind you on the last Herceptin - my last one is Jan 19 (also happy dance).  I have also been retaining more fluid, especially in the legs, lately.  I asked my MO at the last appt 3 weeks ago if I could go back on the diuretic I was on for the last half of chemo and he said I could.  My blood pressure has elevated slightly and my EJ had dropped slightly, but neither seems to alarm anyone tremendously.  I have not had the de-porting convo with the MO, will do that on the 19th as we map out the plan going forward.

Hip, hip hooray SpecialK and margie on your closure (almost) to Herceptin.  I know the darn deporting is exciting but scary at the same time.  I'll find out soon what they will do with me and the Herceptin.

Congrats to all of you who are ending the Herceptin.  I just saw my onc and she is re starting me onHerceptin t next week after missing the last 2 cycles due to heart issues. I still have 5 months to go to get in a year of herceptin therapy.   At this last appt, I told her I felt like I was having to choose between the re occurence of breast cancer vs getting heart problems.  All the doctors said I could wait a little on getting  an angiogram, just not sure when to do it. .  Probably will get it done before the  reconstructive surgery.   I am looking forward to getting the Tissue expander out and looking better  It sure  is frustrating to have to wait longer for the surgery due to the heart issues.   I think the whole  upsetting thing about this is that we know that herceptin may cause heart damage  but it seems no one really knows how long herceptin should be taken to prevent breast cancer re occurence.  maybe 6 months is as good as 12, or maybe 24 months is needed.    They really don't know  I guess if the heart does start to get worse I will just say enough is enough and stop the herceptin.  At least they have herceptin.  20 years ago things would have been worse for us. 

The trial in Australia sounds very valuable.  Getting predictors of who can or cannot tolerate this treatment  seems important. 

Question: Some one  mentioned earlier on  this thread that celexa was a carcinogen.  I think many of us may be prescribed anti anxiety meds  like celexa or other SSRI's.  Are other similar drugs to celexa like Prozac, lexapro, etc also carcinogenic?  I have not heard this mentioned before