Bad heart news.....wah!!!!!!!!

7andcounting · 06-01-2012, 06:46 PM

Hello All,

Well the fun just never stops. Just when I think I know the plan, life springs new things on me.

I just got through jumping through all the hoops to qualify to be on the TDM-1 trial. Got my tissue sample verified that I was Her2+, had every scan imaginable and thought I was all set to be randomized to one of the arms of the trial, when I got a call that my heart function was very low.

Shock!

I have been having echos every 3 months and all was fine. I asked to have a MUGA to confirm that the echo was correct, b/c it didn't seem possible that my heart function could have deteriorated that much, but the MUGA confirmed that it was indeed true.

My question is: Has anyone had their heart function drop significantly, then gone off Herceptin for a few months and then had their heart return to better levels that let them resume their Her2+ targeted therapies?

Any insight is appreciated!

Thanks!

BonnieR · 06-01-2012, 08:46 PM

I have no insight into your situation but just wanted to show some solidarity with you. It seems that anymore, "it's always something". Not as signifigant as your setback, but just every time one thing settles down, there is another to take it's place. I feel like they just line up and take turns. I would like just a week or two when absolutly nothing medical needs my attention. All I can say is, keep the faith. And I know others will be along to give you a hand.

StephN · 06-01-2012, 09:14 PM

Hello 7 -
Many of us here have had our LVF drop, and have taken a Herceptin holiday to let things normalize. Some of the members here have needed to see a cardiologist and get on a med to get things back to normal. Others of us have just decided to walk a lot and take CoEnzyme Q10 in a dose effective for helping our heart.

If you use the search function, you will find a lot a posts and thread on heart problems.

Assuming your heart function is too low right now to get into the trial?

Best of luck for solving this setback.

NEDenise · 06-02-2012, 04:54 AM

Good Morning!
Yes, indeed! I had to take a Herceptin Holiday in February. After 4 weeks of walking, and two different meds (Coreg and Enalipril)
my EF jumped from the low 40s, back to 60%.

Ironically, my blood pressure was never actually "high"...I think my highest ever was 140/80...but that was high for me, since I usually hover around 95/60. The cardiologist said for me, the 140 was high and was putting strain on my heart...not allowing it to heal between Herceptin infusions.

I honestly just did NOT want to take heart or blood pressure meds...but then I never thought I'd need cancer meds either... anyway... I have to admit...I feel more energetic than I have in quite a while...so I guess the doc was right. She also recommended fish oil. I think her exact words were, "Every adult would benefit from fish oil, heart problem or no", and although she doesn't believe CoQ10 will have any benefit...she okayed that too.

Are you under the care of a cardiologist? Luckily I had agreed to be part of a study regarding Herceptin and heart health...so she was watching over me anyway. If your insurance will allow it, it might give you peace of mind to check in with a cardiologist who is familiar with the whole "Herceptin thing". Maybe your onc could recommend one?

I hope your heart bounces back as quickly as mine did! And good luck with TDM-1!!
Denise

7andcounting · 06-02-2012, 08:14 AM

Thank you for all the advice so far. I ride a stationary bike....is this is good as walking?

I am not able to be on the study due to my low lvf, and the study nurse said it might be that now I have a history of this problem and it will make it so I can't be on the study at all...even if things get better. She is checking on this.

I will get the name of a cardiologist. Good to know that there is something that I can do to try to raise this number.

Thank you!