Herceptin Heart Attack

khertenst

Good luck.  Kay is right in that the heart meds do help.  I have only an occassional heart palp now whereas before they were non stop.  Hoping my EF raises too which everyone says it will.  Keep us posted.

Serenity:  Good post on the port removal.  Hadn't thought about the fact that most of us only have one arm to do blood draws from but as Lago does, we can all use our foot for the draws.  I just really want this creepy port out and I have great veins.

Have a great Friday everyone.

Omaz, thanks for the link to this board! 

Hi all, it is so nice to read that people are experiencing the same things I am. I have had 14 Herceptin treatments so far, and the last one was cancelled due to a 20% drop in the EF in 8 weeks. The MO said he wasn;t comfortable with the drop, but also doesn;t seem to be paying attention to me when I tell him how I feel, I have these horrible muscle cramps that wake me up at night, I get winded so fast when I try to do something, get the chest pains and palpitations, headaches, dizzy at times, and just sooo tired.

The muscle cramps are strange. My feet will cramp at any time of the day, my legs mostly at night. I also get cramps in my back by my kidney area.

The other thing too is I have gained so much weight, as of this morning, 45 lbs. If I am going to gain all this weight, I wish I could eat the stuff that would make me gain so at least i cound enjoy it and then know it was all my fault.  When I talk to my MO about the weight gain, he just tells me that weight gain is not a side effect of Herceptin, and most people just gain weight when they stop chemo because they eat more. I know I am a big girl to start with, but I am not eating like that. I even put myself on a liquid diet and gained 4 pounds.

I also feel so dried out all the time, and even drinking water makes me feel so bloated and uncomfortable. I ate a half cup of veggies with a small piece of bread for dinner last night, and felt like I ate a 6 course meal. Does anyone else experience this?

I just wanted to let everyone know thatmy EF went back up to normal after about 2 years. It went down to between 15 and 20 five weeks after my last echo. According to my onc it shouldn't have gone down so far so fast and usually herceptin heart damage happens near the beginning of treatment. I only had 2 treatments left.

To me that seemed like a long time even though I knew it could take even longer. I am on my second cardiologist who may also get fired. At my last visit he said that if heart function was going to improve, it would do so in the first 6-9 months. It is obvious he has not dealt with heart failure from Herceptin before. I don't think anyone around here has dealt with heart failure from Herceptin before.

Rosemary:  Was the BP medicine you went off of an ACE?  I was on lisinopril and it causes a cough.  They took me off of it and I say again that studies we see here on Breast Cancer.org show the Ace's and a link to bc.  Glad I'm off of it!

You are so right in that it is nearly impossible to find a cardiologist who gets it with respect to Herceptin.  Very frustrating indeed.

Arlene

Yes the last one was lisinopril. I thought the pulmonologist would put me on an ARB when I went back and told her my cough had gone away after I got off lisinopril.She didn't maybe the cardiologist will. I was told I would be on heart medicine for the rest of my life.

I was taken of fcoreg because it made my asthma really bad. I fired my first cardiologist because I kept telling him for a year that my asthma was worse and he said I was on too small a dose to make any difference. The shortness of breath that everyone thought was from heart failurre `went away completely when I was on heavy meds for a severe asthma attack.He did not want me off coreg. Well I obviously didn't need it because my heart and lungs both got better when I was off it. 

Kenny - They had good results with the small FINHER study where they only gave 9 weekly treatments of herceptin total. LINK

Thanks Ladies still waiting to hear from cardio!!! Trying to stay postive about this but for fu@k sakes I just can't believe it....... nothing can be simple. Just want to have some security in all of this.

Good luck Mema.  Stay positive.  It will all work out.  I just moved here from Pahrump...not too terribly far from you.  Assume you are going into Vegas for your treatments.  I had all mine at NV Cancer Institute...great place!  You know, you have to decide what is best for you and only you can make that decision.  I wish you the best!

That's funny Mema.  Hubby and I looked at moving to Montana where our Vegas friends retired.  I was going to Comprehensive but friends were volunteering at NVCI so I went there instead.  You know the protocol is pretty much the same whereever you go.  I did love my doctor at NVCI and all the staff...yeah they had and are having their share of problems but UCSD Medical Center has jumped in an purchased them....I get all the notices.  Pahrump was ok but just not for us. 

So nice chatting with you and I so wish you the best....the Herceptin thing is a tough one for those of us realing with heart issues.  My nephew is a cop in Vegas so I'm accustomed to abbreviations and you see so many on bc.org.

Best to you!

Actually my nephew is a NLV cop!  Our friends live in York, MT - outside of Helena!

Night Mema.  Getting late here on the east coast!  Take care!

YaYa:  My numbers were similar to yours - I think maybe 55-60% at the start, then in 3 mo it was 60-65% then the last time it was 50-55%.  I freaked out, but my cardiologist said that it's still within normal range and that all doctors read the results differently so they really just look at the fact that all the results are within normal range so far for each echo.  I did just have another echo on Monday and haven't heard the results.  My cardiologist is familiar with Herceptin and is also a cancer survivor so he knows I'm scared to death to get Herceptin.  The last time I was in there, I was asking if they could just do at least a troponin level before each of my last 3 infusions and they looked at each of my echos and compared all my numbers for each one and said they did not see a marked change to indicate that I needed any troponin levels drawn before each Herceptin.  I felt better once I saw them look at each echo and compare it instead of just looking at the result numbers.  I'll let you know when I hear the results of the newest one.

I guess it all depends on the doctors as to whether they stop it or not.  Mine started at 70 something, dropped to 66.6, then to 60 and three months later to 51 which they thought was a big drop so they stopped it again.  I feel pretty good except for the dizziness which I think is more from all the beta blockers they have me on.  Switching to COREG in a day or so and a lesser amount than all the Metropolol I'm on and hoping that helps.  I don't get another echo until next mid-March but I might insist that they do it sooner so I can get on with the Herceptin.  If it drops big again.....we will see!  When I had the last MUGA here in Florida (all the others were in NV), these guys thought it was my pre-chemo testing and all the doctors have told me that 50 is normal.  My concern is that it started so high but I was doing tons of running before all of this.

Oh guess I am wrong about 50 being a magic number. I guess that is just where I go. It sounds lke it's all a bit of a crap shoot!