Heart function decresed
 

Hi Ladies,

I recently had a gated heart test as my ejection fraction had dropped on the ECG test and it has come back with a 49%!! I am now not able to finish the last 2 herceptins unless after a break I show some improvement.
My question is does anyone know anything I can be doing to try to help my heart recover the Onc said no but I'm thinking Hawthorn tablets or similiar??
Also and this is of course a big also - does this bode badly for any future use of Herceptin I may need? Of course I am hoping for the best but preparing for the worst this is probably the wrong mind set but I have such small babies - Eddie only turned 1 last week and I find I need to plan contingencies as much as possible!
Any input would be gratefully received

Jenny xx

Re: Heart function decresed
 

Jenny, my echo score went down as low as 45% but it did not take too long to get back up to 55%. I took fish oil and also exercised. Dont know if that helped but did no harm.

Re: Heart function decresed
 

CoQ10 baby. And walk as much as you can.

Re: Heart function decresed
 

I agree with Chrisy on the CoQ10 (Co Enzyme Q10).
Ask somebody about it. Do you have naturopathic physicians over there? They know its benefits.
Some nutritionists and herbalists know too.
Fish oil with omega 3 might help too. So does exercise.
Take good care of yourself. Blessings

Re: Heart function decresed
 

Elaine and Chrisy - I already take 150mg of CoQ10 but I am maybe not regular about taking it every day which I will now be!
I do go to the gym but only once a week I am like so many others extremely time poor as my little ones (1 & 3) are still very dependant I will try harder!
Thanks for responding ladies I appreciate it.
Would you not worry about not getting the last 2 herceptin doses??
Thanks Jenny x

Re: Heart function decresed
 

Jenny,
I'm in the same boat as you. My EF is down near 45, and I'm on a Herceptin Holiday too.
Nerve-wracking!!
I'm feeling soooo tired. Have you had that experience? I'm wondering whether it's my heart, or my emotions. Maybe both.

Hope you're back above 50 soon. And Happy Birthday Eddie!!
Denise

Re: Heart function decresed
 

Hi Denise,

Nice to know I'm not alone with the low heart function but really wish we both weren't here! It's a bit scary isn't it when the miracle drug makes you sick?? We will have to make a pact right now to never need Herceptin again as it just isn't any good for us!

Have your oncs suggested anything to increase your fraction?? Mine said nothing to do but I seriously doubt that! I am not especially tired but do have a tight/weird feeling periodically in my sternum.

As an aside have you wondered why they call it 'fraction' when it is measured as a percentage??

Stay well

Jenny xx

Re: Heart function decresed
 

Hi
A lady at my centre experienced low ejection fraction on herceptin around 45. They stopped herceptin for 2 doses and rechecked but was still low. She was referred to a cardiologist who prescribed a short course of treatment ( sorry can't remember the name of the drug)and it improved. She then completed her 12 months of herceptin. I know this is in England but a few years ago there was a post on the board from someone in the States who had an identical treatment.

Hope this helps.
I totally understand the fear and anxiety that this causes. Unless you are on this road it is hard to understand how stressful these blips are and what an impact they have on your psychological well being.
Ellie

Re: Heart function decresed
 

Ellie,
Thanks for posting. So thoughtful and kind of you to reach out to us!

Jenny,
I was referred to a cardiologist, who prescribed enalapril. It's an ACE inhibitor, which, if I understand her correctly...which is never a certainty on my part...reduces the "strain" on my heart and allows it to recover faster. I take it twice a day, and so far there don't seem to be any side effects. Apparently it's used to treat high blood pressure too, but that's definitely not an issue for me...I usually hover around 110/70...

She also did blood tests for a heart enzyme (troponin)which would be elevated if there had been any permanent damage. It was not elevated. (Thank you, Jesus!)

And... yeah! what's up with the fraction/percentage thing?! Good catch (and thanks for the giggle)

I'm "all in" on the pact to never need Herceptin again, once our 12 months is up. Would that be a dream come tue, or what!!! And yet, right now....I waaaaant myyyyy Herceptin, and I want it NOOOOOOOW!!!

I feel like I'm just drifting...no direction to my fight. I hope I'll be okay with not having 'H' once my year is up. By then, I'm hoping not to be so stinkin' tired all the time....and I'll be busy living my regular life. But right now, I have too much time on my hands...and that allows my brain to wander to places better left unvisited.

Stage IV sisters who are reading this...please forgive me for wallowing and whining...when I think of what you deal with bravely, every single day, I'm humbled. You are an inspiration...and in my weak moments...I look to you, and know that I'll be okay, because you are blazing a trail for the rest of us. But, I bet you understand how scared Jenny and I are right now.

so...Jenny...I see the cardiologist on Thursday (just how I wanted to spend my 47th birthday!) and if I find out anything new and useful, I'll be sure to let you know. I'm definitely going to ask her about CoQ10 - heck! if Chris recommends it, that's all the endorsement I need!

Praying for all of us,
Denise

PS-I remember when my boys were 1 and 3...you must really be exhausted at the end of the day! But, what a great time that was! I envy you all the hugs and kisses you get each day! My boys are 12 and 14 now...I have to chase after my hugs and kisses!

Re: Heart function decresed
 

Hi Jenny and NEDenise,
My EF dropped to below 50 after herceptin number 9 and was put on a herceptin holiday for 6 weeks. My Onc thought I had no chance of it improving to his minimum of 60, but it did, thanks to some advice from Brenda and Chrisy. I took loads of Fish oils Ubiquinol (CoQ10) which is more easily absorbed by the body and got my butt to the gym everyday and after 6 weeks it was back up to 64- my Onc's face was a picture when the results from the Echo came back. You can do it....positive mental attitude and all that!! Lots of love xx

Re: Heart function decresed
 

Denise - happy birthday!! Hope your visit went well with the cardiologist?

I just went to see my GP and he was about to prescribe a drug similiar to yours but I could use the high blood pressure aspect of it however he decided to wait until my next echo to see if it comes back up on its own so we can def say its the Herceptin. I have been having strange pains and tightness in the chest area also some dizziness so we will wait and then see. I do have a referral for a cardiologist as well so again wait and see.....

Thank you everyone for responding its good to know you're not alone especially when things go a bit bumpy!

Jenny x

Re: Heart function decresed
 

Jenny

You need to take 390 mg of CoQ10 for it to be therapeutic for heart function. Do not take it all at once and wean yourself into this dose and when you want to scale back, wean your way off this dose.

I know you are taking 150mg now and I don't know how you take it but you could increase to 200mg right now.

100mg at breakfast, 50 at lunch and 50 at dinner. Do this for 3 or 4 days and then increase to 250 by doing 100mg at breakfast, 100 mg at lunch and 50 at dinner (always keep the dinner dose low as for some people, CoQ10 interfers with sleep).

A couple of days after that do 100-100-100. If you do have sleep problems because of it, switch to 150-100-50. I think you get the picture. Do this until you are at 400mg. There is evidence that this daily dose does work for many people. I used this dose during Herceptin and was able to finish even though my echo was dropping.

When its time to scale back, also scale back as above, cutting out 50mg every 3-4 days.

Re: Heart function decresed
 

Hello Everyone,

I am now on full scale make my heart strong!! Gym, food(I always eat reasonably well anyway) fish oil - I even went and got liquid so it is more effective and increase COQ10 I have 150mg tabs so will go and purchase lower strength ones today. I have a referral for a cardiologist and hopefully I can get in this week to check out my dizziness and chest tightness and I have had blood tests as well to see if anything shows up!
I got all weepy today and pretty depressed but am trying not to wallow - I really have no information to wallow about! So it business as usual unless I get told otherwise. I always feel dissapointed when I get upset when really I have so much to be thankful for.
Thank you all so much for all your input and hopefully I will soon update you with some good news!
Have a lovely day
Jenny xx

Re: Heart function decresed
 

To Jenny and Denise,
Good luck with the heart issues. Today I had my 5th dose of herceptin. (It was my first time without the other chemo drugs, so I am making some progress!). Thursday I have an echo. I'm hoping it will be ok. I have been having a little bit of tightness in my chest also, but am hoping maybe it's just anxiety. And tomorrow my regular doctor wants to see me about my high blood sugar. It came back as 265 on my last blood test...I think it just went high from all the steroids I was taking with the chemo. But I'm glad he is on top of things and wants to check me out, since the cardiologist never even mentioned it. And I know what you mean about feeling bad about feeling bad, when there are so many other people who are dealing with much worse! I got upset last week when almost all of my eyelashes came out! I'm used to having no hair, but no eyelashes too! This stinks...and yet, really, it's just eyelashes!!!!!
However, going on a date with a wig and false lashes (not to mention uneven breasts with no nipples!) creates some challenges! LOL!
I think everyone on this site really is strong! The things we go through!
Good luck!
Pat

Re: Heart function decresed
 

I had the same thing on a clincal trial... and risked being left out. I was told there was no such thing as too much CoQ10... I take minimum 300 mg a day of it, and I take Lisonpril as prescribed by the Cardiologist, which is very specific to the Left Ventricle. And if you are able, Omega 3 is very left ventricle friendly. I also walk walk walk religiously. 30-45 minutes a day, as well as no caffeine or alcohol (I drink non-alcohol beer and decaf tea and coffee.) It all helped me get mine to 55% within 3 weeks... best wishes!!

Re: Heart function decresed
 

My naturopath has me take D Ribose along with the CoQ10, Omegas, ets. D Ribose is often prescribed to folks experiencing congestive heart failure and is good for supporting the heart muscle. My Oncologist and Cardiologist both approved it. If you look at my protocol, I was given Adriamycin and Herceptin at the same time - something seldom done because of the cardiac toxicity and I did great.
Google D Ribose to get more info.

Re: Heart function decresed
 

Hi, friends! So, I just got back from the doc. My EF is at 50. They told me to keep going on Herceptin, but come back in 2 months for another echo to see. I've only had 3 treatments of Herceptin (1 every 3 weeks).

Jenny, I get it. I thought Herceptin was the miracle drug, and now I may not be able to take it?! Am I being insane? I had a complete pathological response with the chemo before my bmx--I chose to be really aggressive with the surgery. As I'm thinking of this more tonight, I'm getting more scared. My little boy is just 5.

Re: Heart function decresed
 

Profbee,

You're not insane just human it really is so scary when you look at your little ones and wonder if they will get a Mummy to grow up with!
On the plus side for you the complete pathological response puts you in a good place you know just need the 'insurance' package you signed up for! There are drugs they can give you to help EF and of course you have read all these other suggestions on this thread. I wish you well.
I have my echo tomorrow so fingers crossed I can get another Herceptin in and then only 1 to go.

Denise how did your echo go??

Jenny xx

Re: Heart function decresed
 

Hello Everyone,

Just a quickie to let you know my EF is now at 57%, thank you to everyone for all the good suggestions, and so I am to have my final 2 herceptins!! Big sigh of relief!

Thanks again for all the love and support it means so much

Jenny xx

Re: Heart function decresed
 

Im so glad for you that it all worked out. My prayers are with you.