Great News!!! Plus, 1 wk or 3 wk dosage?

[Linda in Calif.]

Hi All: First I would like to thank everyone who responded to my earlier post about CO-Q-10. I started taking it and (drum roll, here!) my insurance company approved my use of herceptin so it's a good thing I started the CO-Q-10 when I did. My Onc had me do an echo-cardiagram to measure my ejection fraction. It came back at 66. Not as good as I had hoped (previously I had measured 79) and I thought for sure my Onc was going to refuse to give the herceptin to me. Low and behold he said he would leave the decision up to me as long as I absolved him should I experience heart damage (kind of a scary thought!).

My next question for all of you is what would be the best schedual to recieve the Herceptin. I know you can get it either every week or once every three weeks. Every three weeks would be a lot more convenient but because, previously I had heart damage while taking the Herceptin, I thought maybe a lesser dose more often would be easier on my heart. Does anyone have any thoughts, info or comparisons about the two different dosing scheduals?

Thanks in advance, Linda in Calif.

[Lolly]

Linda, CONGRATS on getting Herceptin! As far as the weekly vs the 3 weekly, I've done both and my ejection fraction has remained steady with both. It's not great, in the mid to high 50's, but it's been that from the beginning so we're assuming that Herceptin hasn't damaged it. My oncologist has said any effect usually shows up early rather than late, so he feels I'm pretty safe after over 4 years of Herceptin.
Since you did experience some damage from your previous Herceptin, maybe you should think about starting with the weekly since it is a smaller amount (after the loading dose, which I think is also smaller than the 3 weekly loading dose). If your ejection fraction holds up, then you could think about switching to the 3 weekly, which really is more convenient. I'm hoping to switch back to that myself after the vaccine follow-ups.

<3,
Lolly

[*_Tami_*]

Congrats Linda -

I have been on herceptin every 3 weeks since last August - my ejection fraction was 65 pre-chemo and dropped to 55 after chemo. I pushed my onc for herceptin and we do Muga's every 3 months. My ejection fraction has stayed between 52 and 55. If it ever dropped dramatically the plan was to stop the herceptin for a period of time and let the heart recover. I have no idea on the difference between 1 week vs 3 weeks. 3 has definitely been a breeze for me. I have 2 treatments to go!.

Best,
Tami

[StephN]

Dear Linda -
I recall how upset your were when you had to go off Herceptin - there were several posts about that. And now your body has cooperated and recovered enough for you to go back on it! HOORAY!!

Seems to me that Lolly's suggestion is a reasonable one. Try the lower doses, and then step up if all remains well.

I think you will have more peace of mind back on Herceptin.

[SusanAnne]

Hi Linda,

I started Herceptin with an EF of 55. Because I received it thru a clinical trial and would have been booted out, not to be let back in, if my EF fell below 50, I consulted a cardiologist when one of my MUGA's came back at 51. He put me on an Ace Inhibitor and a Beta blocker, which he does for most patients with weakened hearts, and I was able to finish my full course of treatment.

Now I know that some people and doctors don't believe in taking one drug in order to take another, but it was so important to me to be able to get the Herceptin. The trial results only reinforced my belief that I did the right thing. Besides, how many women take Lupron shots in order to take an AI?

I have never met anyone else who has done this, so I'd be curious to know what your cardiologist has to say about it. 66 is a good number right not, but should you drop back down, I wonder if this would work for you. Here's hoping you won't have to find out.

Susan

[*_Linda in Calif._*]

Hi All: Thanks for the response. My Onc and I have decided to start out with me getting Herceptin every week rather than the 3 week schedual. That way my heart doesn't get such a strong "hit". After I've done that for a few months, if my ejection fraction remains OK we might try the 3 week interval. I have an appt. for next Friday to get my loading dose. Keep your fingers crossed for me....this is my last chance to get the Herceptin.
Thanks again, Linda in Calif.

[Gina]

Appreciate your question..glad you are finally on the herceptin...will be interested to know how the co-q 10 works for you...I personally prefer magnesium/walking/onions and beets to protect the heart, but I know co-q 10 is great for congestive heart failure and other heart damage, but with ejection fractions as high as yours...seems your heart is in super shape...Anyhow, my two cents regarding treatment options. I am currently getting 6mg per body weight dosing once every 6 weeks and LOVE it. I have taken herceptin alone (plus diet) off and on (in almost every conceivable format) since early 1999 and find this works great for me...but to do it...you have to CONVINCE your onc to carefully and scientifically monitor your CA 27/29 and serial serum her-2 markers on a regular basis to be sure that WHATEVER dosing you decide on is keeping your numbers in check...meaning (per my unpublished research) a CA 27/29 at or below 10 and an serum Her-2 in a normal range (below 12 or 15, depending on the assay) Hope this is helpful, Best of luck, Gina For more information you can email me direct at GPOPP@Comcast.net. Cheers.