Herceptin Heart Attack

evebarry-

I understand and appreciate your heart worries. My heart function did about what yours did.  I was put on an Ace (very low dose) and a  beta (lowest dose possible). I have low blood pressure. with the low doses I am doing fine. When they put me on a beta blocker that made me non functional I stopped it and was put on a different one that works well for me. I wanted to let you know that my heart function started to drop after the second dose of weekly herception with taxol.  That was when I was put on the ace inhibitor.  I stayed stable for quite some time.  I got thorugh teh weekly doses and into the every 3 week doses before my heart function started to drop again.  It was at this point that we decided to stop treatment for a while and wait to see what happened. After 3 months my funciton had stablilized and the heat muscle had gotten stronger but not enough to continue treatment.  I was taken off Herceptin and am now done with treatment.  

what i have learned from this expeerience and with time.  These are my thoughts.  I decided that having decreased heart function with the knowledge that I did eveything I could to get rid of the cancer was a better choice for me than not doing treatment and worrying my aggressive Her2+ cancer would come back.  I have learned that many people actally live with heart function like mine (40=45%) every day and don't realize it. I am not sure I would have known the difference if they hadn't been looking out for me.  Herception the medicine itself leads to fatigue and other SE.  I have found that time off the Herceptin has brought my energy level back as well.  Yes, I am still on heart meds but I realize that as I get farther and farther away from my Herceptin treatmetns, my energy level is coming back.  I think the drug itself had a lot to do with my energy levels more so than my EF. 

 In the end, it is important to go with your intuition and what feels right for you.  I would say that after reading your posts, you need to tell your doctors you are not comfortable with continuing with Herceptin at this time and woudl like to be more closely monitored by a cardiologist.  this whole situation sucks and there are no right answers. You need to find the one that you can live with. 

I wish there was a "like" button on here like there is on Facebook ! Lol. This is all so frustrating to me. I agree with left. I think I would feel better knowing that I did everything I could to prevent this monster from coming back. Here's something else I've been thinking about. My hormone receptors were negative..so if I'm not able to take anymore Herceptin, is that kinda the same as being triple negative?? (since there would be no target therapy?) I just remember my breast surgeon saying that although Her2 +++ is very dangerous, at least they can treat it w Herceptin. I won't know anything more until my next MUGA on the 15th, but w my EF at 37 I just know its not going to be "better" by then. I've pretty much prepared myself for that.



Only 7 more rads!

Thank you ladies...great advice.

Left...was the tamoxifen easier to handle when you had weekly infusion rather than the every three week infusion? My oncologist was suppose to call my primary doctor about sending in a prescription for ACE inhibitor. That was before I went on the link for Ace inhibitor. I don't want to take an Ace Inhibitor before sitting down and talking with my doctor...preferrably my cardiologist. My naturalpath doctor e-mail me today asking me to make an appointment to talk to her about my heart. She is also my thyroid doctor treating me for hypothyroid.

I am NED. If I did presently have cancer perhaps I would be more appreciate of preventive cancer treatment. Right now, I feel like I'm throwing harsh treatments at cancer that might not even be there.

I haven't been able to cancel the Monday Herceptin Infusion. I called in on Thursday telling them I wasn't comfortable with the infusion without knowing what my EF is right now, and taking something like an ACE inhibitor to protect my heart. They just called me back and said they were calling it in through my primary care doctor. Why couldn't they had prescribed the ACE inhibitor for me. Doesn't matter because I am not taking it without a doctor making sure it is safe for me to do so. I like the low dose idea. I wonder if that would be enough. They haven't called me back about the appointment on Monday so I'm not sure where I stand with it.

 I wonder if they will charge me if I cancel out Monday morning.

I'm still torn...It't a hard call. 

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Hmm...interesting Tonlee that you take a split of armour and synthroid. I took Amour for about 6 months untill it was taken off the shelf and changed. The new Armour made me feel ill so my naturalpath put me on Synthroid. I've done pretty well on Synthroid. My antibody went down from 100 to 45/46. I never had the typical hypothyroid symptoms. Another doctor seems to feel it is due to adrenaline exhaustion or yeast.

The estrogen connection is a new one to me. I do know my estrogen path report showed it was 96 and I'm post menapause. Apparently I'm still producing estrogen. I still have all my plumbling. I don't think I'm getting estrogen from my ovaries. One doctor said our adrenaline produces estrogen. We can pick it up from foods, and water and fats...also face creams. Whatever, I'm getting apparently plenty of it.

I just had a thyroid test. With taking thyroid meds my tsh is finally showing normal, but my tsh3 & tsh 4 are still low. I believe they are low due to Herceptin in that it slows down cell activity. I have another thyroid test in six weeks. I will have then been off Herceptin for six weeks so we'll see if there is any correlation.

Tonlee, Sounds like you have a good source where to buy your Armour. Like I said, I used Armour until they took it off the shelves a few years back. The new Armour made me ill. I admit that "pig" is hard to swallow. My Jewish husband and our kids don't like pig and I too am a little uncomfortable with swine hormones. I'm glad what I'm doing is working for me. My naturalpath prefers armour but saw how ill it made me as to why she had no choice to prescribe synthroid.

I will keep you updated

Thanks for your encouragment.

hello ,

 sorry to come inbetween your conversations but my herceptin was stopped last nov i had three left to go, it affected my heart, they put me on a beta bloker for our months, but by then  i got a spread to lungs 11 weeks ago, so i have been on taxol, since then, i am doing well so far they done a muga and that was fine, i have had three herceptin so far had a muga last week and its gone from 58 to 45, so they have stopped it again, but my onc is reguestion tykerb for but shes not sure whether they will except this along with taxol, so what i am asking is there anybody having the same.

                                                         lorraine x

Lollypop...my goodness, you have gone through a lot.  I'm so sorry your are dx with mets. How do they know if the lung cancer is still her2+? If it is it's too bad you have heart issues as well. I hope the beta blockers help.

 Seneritywisdom... yes, good advice!  I was due for my third infusion the day before my reconstruction surgery. I asked to have the herceptin infusion cancelled. Three weeks after my surgery I had the third Herceptin infusion. I felt I was putting my heart at risk with the herceptin infusion the day before surgery. So funny because I'm the one who is putting on the brakes.

i was assigned to an cardio doctor who knew nothing about herceptin. I am going to ask for a cardio oncologist specialist.. I' haven't looked up beta blocker, but recently looked up ACE inhibitor. The side effects are scary and I already have low blood pressure. My onconlogist nurse said they were recommending my primary care doctor order the ACE inhibitor. Who is she (primary doc) to recommend it to me when she knows noting about herceptin. I don't understand her reasoning. I won't see my oncologist for another month. Then I'm requesting a oncologist cardio specialist.

Tonlee good to know what your doc said about beta blocker and ACE inhibitor. I' can't imagine being more tired than I have lately especially the first week after the herceptin infusion.

I wonder if I did a low dose of herceptin weekly if it would be more tolerable. I suppose if I'm dx again it is something I'll ask.

This is such a great and helpful thread.

evebarry - the proBPN and troponin tests can show heart damage earlier than echo's or MUGA's.  It is not standard practice to run them on someone on me who appears very healthy heart-wise, but I convinced my doc to do it based upon my worrier nature AND my family heart history (both parents died of heart attack (mother at 67) and sister at 46 - that's the kicker).  I took a copy of this page from the cardiooncology society recommendations with me and gave it to my doc when I requested the tests:  Diagnosis of cardiotoxicity

If you browse the pages there, you can find a listing of cardioncologists across the country.  Or perhaps you can call the contact # and see if they could recommend someone in your area.  I would look here first and if you find someone in this organization in your area, you could see them.  I would think someone who belongs to this organization would know their stuff.   P.S.  You may have to translate some of the pages into English (my google chrome has a note at the top of the page that I click, and it translates automatically).  

I had 2 mg/kg infusion yesterday (the once a week dosage), and we did it in about 40 minutes.  I was hoping for an hour, but they started me late, so they had to do it faster b/c it was 5 p.m. by the time we were done.  Grrrrr.  (Standard dosage time for that amount is 30 minutes)  Next time when I arrive the onc nurse told me to tell the front desk that I need to be brought back first b/c my treatment lasts so long/so many drugs.  He is more than willing to do it for an hour if that is what I want.  I'm hoping giving it over a slower time period and less intense dosage every week will take a lower toll on my heart.  There is no hard data to back this up, but it makes sense intuitively to me...and if it won't hurt, I'm doin' it!

P.S.  Yes, if I did Herceptin every 3 weeks it would be 6 mg/kg vs. 2 mg/kg on a weekly basis.  Also my initial "loading dose" was 8 mg/kg.  Whew!  If I had been on a weekly schedule, loading dose would have been 4 mg/kg followed by 2 mg/kg weekly.  Since I just switched to weekly, my loading was 8 mg/kg, 3 weeks off, now will be 2mg/kg from here on out weekly.  

Side effects are tough to tell b/c of the chemo cocktail.  I'll know more next week when I do my first Herceptin only dose without chemo.

 Thank you Ton Lee!!!  I feel so much more comfortable proceeding with these precautions in place and my new schedule of going once a week.  I'm sure it will get tiresome if I continue once weekly for a year, but if it prevents heart issues (no guarantees, I know), it is worth it to me!!!  Keep fighting girl!!!  

Thanks Dance trancer for the info I'm going to ask for a the proBPN and troponin tests when I see the cardio or oncologist. I will look at the list for the cardio oncologist drs to see if there is one in my area. Thanks

If I'm ever dx with cancer again, I'll try the weekly infusions. I'm glad you are being so proactive in protecting your heart. We learn a lot from others experiences from this thread...big help. Right now this is my favorite bco thread as it addresses my present concerns.

Not me Msbelle:  I'll have to go look it up because I'm not even sure what that medication is.