Herceptin holiday at stage IV?

[Emelie B]

Hello all,
First, I have wonderful news to share. My first grand child was born on June 5th. A beautiful little girl named Lauren Rae. I am leaving on Mon. to go help and love her up.
Second, I met with my onc yesterday and after discussion, decided to stop Herceptin, continue Zometa, do scans every 12 weeks to see how it goes.
Last scan on May 26th still NED.
He said he has not seen any data to show that continued maintenance on Herceptin delays progression vs Herceptin holiday. He also would like to give my heart a break. MUGA still ok at 53 but down from 64.
If anyone has information to the contrary would much appreciate hearing it.
I have to admit I am nervous stopping Herceptin, unless I am one of those most fortunate people that escapes this disease.
Thanks for any help, and I will be checking in while doting on my new baby.
Best to all,
Emelie

[jellybean]

Hi Emelie,

Congratulations on your new grandchild! I would go for another opinion at a major cancer center. I believe that it is NOT standard of care to discontinue Herceptin in stage IV her2 positive women who are stable on Herceptin. In the US, most stage IV women continue on Herceptin as long as it is working, and in many cases beyond progression. For example, I have been on Herceptin since March 2007. Some on this board have discontinued Herceptin, but this was after many years of stability. It makes sense (I think) for you to have a chemo holiday to allow your ejection fraction to bounce back. But this holiday should not be indefinite. You should continue to have your heart monitored and make a decision for further treatment in light of these results. I think it would be highly unusual for a Her2 positive metastatic woman who is less than a year out from initial treatment for metastatic disease not to be on any treatment at all. Unfortunately, I don't have any studies that support this approach at my fingertips. Hopefully, someone else will chime in.

Best,

JB

[Becky]

I agree with JB but have no data. All Herceptin inserts from Genentech only state that it should be given as long as there are benefits and no cardiac problems. It also states you should discuss with your doctor.

I would get another opinion as JB suggests as all the women here who are Stage 4 continue on it (except some stop after being NED for many, many years)

[StephN]

Hello Emelie -
Congrats on the grandchild! Aren't they a wonderful lift to our lot in cancerland?

If your onc has not sent you to a cardiologist, I would get your GP to send you. You had an 11 point drop in MUGA and that indicates a rest period (holiday).

If nothing is found to be wrong with your heart, try taking Coenzyme Q10 and getting in some light cardio workout to improve your heart muscle. Taxol was hard on me in the same way.

In three months, very likely another MUGA will be back up and you can resume Herceptin. Zometa will do nothing against soft tissue mets - only bone.

[Rich66]

It seems there is more and more about benefit of continuing Her2 therapy. Recent articles suggesting extended H could gradually diminish cancer stem cells.

But if you have adequate kidney function and can continue Zometa, there is growing evidence of benefit outside of bone:
http://her2support.org/vbulletin/showthread.php?t=39563

[SoCalGal]

Congrats on the new baby!
I concur with Steph and all. GET ANOTHER OPINION. There are many ways to improve heart function by working closely with your medical team and also the coQ10, exercise, and diet.

Flori

[sarah]

Congrats on the grandchild. 2nd opinion sounds like sound advice. Do you take co-enzyme Q10? I started taking it early on after reading about taking it on this site to help keep the heart healthy and even though I only take 100mg a day (many of here take 3 times as much but spaced out through the day), my heart tests have stayed steady and I've been on Herceptin since 2004 although my onc has talked about stopping. I'll be having a Petscan soon and that should tell more. I don't have distant mets but regional invasive. How do you feel about stopping or not? also are you still taking AIs? seems they need balancing. maybe Lani and others will chime in on this.

[jhandley]

Hi Emilie
I was on herceptin for 4 years and then went off it. 8 months later scans showed multiple small mets in liver and small pleural effusion. I have been back on it (and abraxane) for 8 weeks and the pleural effusion has cleared and I will have a CT scan in 3 days to see if I am back in remission.
I would be very, very careful about going off herceptin. Get some Life Extension Foundation Q10 for your heart and your MUGA will improve to normal quickly..
I went off it to have a break from the sinus problems and I used to feel a bit down on the day I had herceptin..but I am prepared to put up with these minor side effects to stay in remission,
Cheers
Jackie (down under)