Heart damage from Herceptin

[lisahammo]

Hi everyone

I haven't really been keeping up with my posts much lately, as I have been feeling so good, but got bad news yesterday, and need a little support. My world is crashing down around me again.

An echo has showed some damage to the lower part of my heart, so I am off the Herceptin. I have been on it for just over 2 years now, with Taxol on/off. I am seeing a Heart Specialist on Friday to rule heart disease, as my father had his first heart attack at 44, but he is still going strong 25 years later, and 2 lots of heart bypass. We don't really think my problem is heart disease, but more than likely the Herceptin. Has anybody else had damage? My onc says I can have another echo in 6 months to see if the heart has repaired itself, and if so, I could go back on it. Has anyone found this to be the case?

Also, just to kick me while I'm down, my liver levels have begun to rise again, so the Taxol is no longer working. I am devastated, and scared out of my brain this time. As I have to come off the Herceptin anyway, we are going to try Navelbine. My hair has just grown back again (for the third time). Will I lose it again with the Navelbine? I don't know anyone at the chemo ward that is on Navelbine, so can't ask anyone about side effects, etc.

I desperately need some input. Thank you for listening.

Still hopeful. Lisa

[Barbara H.]

Hi Lisa,
Navelbine thins the hair but you will probably not lose it.
Good luck with it.
Barbara H.

[janet/FL]

Lisa
Sorry about the new developments, but I think that from what I have read on this site, that you should be seen by a cardiologist and your heart may be on the mends before 6 months. That seems way to long to wait. Hopefully others will be able to give some first hand information to you.
Blessings
Janet

[Toril]

Dear Lisa!

Sorry to hear about your problems.
I was on Navelbine for almost one year for liver mets. It was wonderful. Felt very well, no sideeffects. AND did not loose my hair!! Then the mets started to grow again, and I am now on taxoterre (and bald! for the second time)

I think that Navelbine has worked very well for many of us.

Toril

[tousled1]

Lisa,

Hopefully you won't have to be off the Herceptin for too long. I've read many posts here about women who have had to stop Herceptin for a few months due to the LVEF falling below 50%. Best to be checked out by a cardiologist. Here's hoping that it is nothing serious.

[Lolly]

Hi Lisa; The first thing I would do is ask for another Echo or a MUGA, to confirm. Sometimes the test can be skewed, so push for a retest. Also, if your heart was tested quite soon after your last Herceptin infusion, the test could be somewhat lower. I've seen a difference in several percentage points lower if I have the test within a week of Herceptin. If indeed your Ejection Fraction Ratio is too low to continue Herceptin, the others are correct in that it may not take 6 months for your heart to repair. I remember some who posted with this problem who were retested in three months or less and showed improvement. One who saw a cardiologist because she was in a trial with Herceptin and didn't want to stop was able to go on medications to improve her heart function and protect it from further damage, and was able to remain in the trial on Herceptin. So these are some options for you, but you are probably going to have to be a "squeaky wheel".

You didn't say what your Echo score was. I have MUGA's now, which is just a different (and more expensive!) way of measuring the ejection fraction ratio; I used to be in the mid 60's, dropped to mid 50's over the last few years, and my last test showed me at 49%. My onc is not too concerned yet, and this last test was done just a few days after Herceptin, so the next test will be interesting and I'll make sure it's scheduled right BEFORE Herceptin rather than right after. I'll be very surprised if I'm not back in normal range (above 50%).

Hope this helps, and don't despair, all is not lost.

P.S. I've been on Navelbine off and on since 2001. Very tolerable and my hair just thinned although everyone is unique in their reactions so I hope your's are minimal.

<3 Lolly

[rinaina]

Interesting Lolly that you say Muga's are more expensive. My onc told me the opposite, that echos are more but tell more about the heart function and he prefers the echo over the muga. I have had muga's up to now but getting an echo next time.

[TriciaK]

Hi Lisa! I went into herceptin after a heart attack and was able to stay on it for 15 months. I needed heart surgery after the heart attack but because they found the cancer mets to my lungs while preparing me for it, it was postponed. I was on herceptin and navelbine the first 6 months then just herceptin until my MUGA dropped to 30. I went off the herceptin and did have a triple bypass in May. I am still NED, feeling great, and if ever needed, I can go back on herceptin because my heart is doing very well. I had little reaction to the navelbine, my eyebrows thinned, and so did my nails, but am back to normal now. No hair loss. Think positive and keep in touch! Hugs, Tricia

[R.B.]

Omega threes and sixes.

Omega three is recognised by some of the medical profession as being benificial for some vascular and heart conditions.

You will find lots if you search NCBI on google.

Here is a link to the Mayo clinic site re omega three and heart conditions.

http://www.mayoclinic.com/health/fish-oil/NS_patient-fishoil

Please do discuss any dietary changes with your Doctor.

If you have "Done" the omega three six thing please excuse this post.

RB

[Mary Anne in TX]

Hi Lisa!

I've been on Navelbine and Herceptin for almost 2 months and my hair, eyebrows, and eyelashes are growing like weeds! Yippee! I have done so well on the combination of Navelbine and Herceptin. I get tired a bit but just rest when I'm needing to.
Believe in the new treatment and go for it!
mary anne

[jhandley]

Hi Lisa
I tried to ring you last night ..will try again tonight. You could try coenzyme Q10. I take 200 mg a day with food and my ejection fraction was 63 % and still 63 % 12 months later. I know it definitely helps.
Cheers
Jackie

[Lolly]

Lisa, I can only guess that costs must vary from east to west :) I had to sign for my last MUGA in case my insurance balked at paying, and I was told it costs $1,000; I know the Echo I had a couple of years ago was billed at just half that...
My understanding of the two tests is that they both measure heart function but in different ways; the Echo can actually "see" the structure of the heart and how it's working, and the MUGA "sees" the blood flow and therefore how effeciently it's being pumped.

[lisahammo]

Thank you all so much for your posts. Don't know what my echo score was, as it wasn't recorded on the report. My onc did note this. The cardiologist may want another echo done for this reason. The echo was done a week after my herceptin.

Will keep you all informed of my progress. Thank you again.

Love Lisa

[cherylynnie]

Lisa,
I had a MUGA 6 days after my last herceptin treatment and it came back at 55. So the oncology office called me yesterday to tell me to set up an apt. with a cardiologist.

But I was thinking, before even reading this post, because the MUGA was so close to my last infusion, could that be the reason for the low score? Seems like that is a possiblility. And of course I couldn't get an apt. until after my next herceptin treatment. So who knows what they will want to do with me.

I have been exercising for the last month and thought if anything my MUGA would be better not worse. Oh well.

Good Luck with everything!

[Bev]

Hi Lisa, for me mugas were more expensive due to the nuclear medicine infusion. I like the echos better as the muga makes me feel claustrophobic. Do try the Q10. My scores improved with it. Need to check with your Doc as you shouldn't use it during rads and some chemo. Good luck with everything BB