Question about Herceptin & Cardio-toxicity...

[jessica]

Hello All-
Turning to you for wisdom and advice, once again!I am very fortunate to celebrate a clean CT/PET last week & 8mos NED after 49 weeks of treament.(Next week I will mark mark 2yrs since dx.)
I've been on weekly Herceptin for a year now, the first 14 weeks was Taxol+Herceptin, but since NED 8 mos ago, Herceptin only.I'd really like to switch to q3week dose, but I have some reservations.Would love your input...
My MUGA scans show that my EF has decreased from 67@dx, to 58 after 12 mos, and then 53 after 18mos.That's ~21% decrease.(Fortunately 50-55 is normal range).I've only been on tx for 2 yrs & I plan to be on this drug forever!I don't want my heart function to continue to decrease at this rate!
I feel strong & am able to exercise vigorously.I also take CoQ10.Any other suggestions? How have you ladies dealt w/low EF while on Herceptin?
I went to see a cardiologist last week to ask him specifically about this & he said "You know, I don't know anything about Herceptin...I don't have any experience with it,"which left me a bit frustrated & wondering why he didn't make a tiny bit of effort to review my chart before seeing me & charging me $300 for the visit!He did, however, order an echo & scheduled me to come back to see him...hopefully in the meantime he'll do some research and will have an intelligent answer!
So, I thought I'd take my question to the most educated, knowledgable & experienced people...my friends here on this board...
Thanks in advance!
Take good care & keep the faith!

[jojo]

Jessica, having a cardiologist who knows nothing about herceptin would be a 'shaky' situation. You can always change doctors, only if desired. Remember YOU have the control over your health care.

Good luck! Hugs

[Christine]

Jessica
Your right to come here for more answers to questions your cartiologist lacks knowledge on. It would be better to go back for the echo interpretations, but forget relying on this to get an educstion w/o the necessary experience. You are officially a more educated Her2 BC patient than most in this country. We are being forced to be our own Advocates as a result of such ignorance by so called professionals. This problem seems to exist unfortunately all over the country.
To answer your question, herceptin has been sucessfully administered for well over 51/2 years FDA approved. Based on data from early clinical trials, herceptin taken with adriamycin can be toxic to the heart. However, Herceptin alone does not cause cardiac toxcicity , very uncomom, and is reversible by stopping infusions for a while. Adiamycin should never be given with herceptin, since that chemo combo can risk heart damage.
I would ask 1 or 2 opinions from Oncologists who have a large practice with breast cancer patients.
I have been on herceptin going on 5 yrs with no problem. Presently taking tiple dose every 3 wks for the past 10 months and feel fine. I also take 200 mgs Co-Q10 ,Stress Bcomplex, Flaxseed 1000 mgs oil, 1200mgs Calcium citrate w/D+Mg. Hope you get educated answers from our Her2 support team.
Hugs, Christine

[Linda in Calif]

Hi Jessica: Many people who have posted here have said that if your heart ejection fraction decresses, if you take a short break from herceptin it will give the heart a chance to repair itself. After your heart has recovered you can resume taking herceptin. I experienced heart damage from taking herceptin too soon after getting A/C. It only took about 6 weeks after I stopped herceptin for my heart to get back to normal. I didn't go back on herceptin because I am only at Stage III and my Onc. wants to save it in case of disease progression. (I'm not sure I agree with him but I've been NED for the last year so I am not pushing it.) Hope this helps, Linda

[Steph N]

Hi Jessica -
I had a MUGA exactly 6 months after getting off Adria and Taxotere. My EF was something like 57, which was good enough to get me into the trial I needed to kick out my mets.
Been on Herceptin since that time - first weekly for about 7 months, then every 3 weeks for almost 2 years.
Thus far my test have been very stable and show no sign of heart problems that could be the result of Herceptin. I also take the C0Q10, B vitamins and some other supplements not necessarily heart related.
You should do just fine with the 3 week dose. It REALLY IS a nice move into feeling healed when you can cut down on your visits to the cancer center!

[Elisabeth]

Sheila is right. Herceptin on its own has a much less impact on your heart muscle. It is mostly when they combine in with chemos like taxol, epirubicin, navelbine. My scan before last was 46 while I was on navelbine too, now I am on taxotere with herceptin and my last one was 51. They do fluctuate some. I think this is the least of your concerns. Go for it.
Elisabeth