Is anybody here stage IV & not taking Herceptin?

If so could you please let me know why.

I am in the U.K. and am HER2+, I had bone mets diagnosed in Feb 04 but seem to be okay at the moment.

My onc. has said that I am entitled to Herceptin but he doesn't want to give it to me until if and when I have another recurrence.

I spoke to a nurse at CancerBacup yesterday and was told that Herceptin isn't usually given until mets to the vital organs are involved.

I'm not really sure what to do and would appreciate any comments.

Thanks,

Love Ally xx

Hi Ally,

You are very smart to be asking around about having Herceptin as Rx.

I am just a little confused bo your cancer history. Did you mean to say that your original diagnosis was at Feb '04 with bone mets, and now you are in remission, and then your onc doesn't want to give to you until if/when you get another recurrence??

For mets ladies, there is no official rulebook to declare that they have to take Herceptin for a certain number of years. In fact, most of us stage 4 ladies here in the U.S. are on maintenance Herceptin indefinitely.

Of course, it is a different story for early-stage women with NED... usually 1 or 2 years in length on Herceptin (with or without chemo).

Good luck!

Ally,
I am in the US.

Was dx'd with mediastinal nodal mets with spot on lung, spot on pelvis in July of '02. I did Herceptin/Navelbine for just over two months...scans came back clear. It was my choice to stop treatments at that point. I was offered to stay on Herceptin for another yr. However, since the Herceptin didn't help my brain mets, I declined.

I have remained NED in body now...nearly three years with NO treatment at all. If I had stayed on Herceptin, I COULD be saying the Herceptin has kept me NED. But, here I am anyway, NED body, with brain mets, no Herceptin.

So, I would say try to feel ok about this. .. Waiting until you need it again, (if again) when scans/tests show progression.

If you would just 'feel' better being on the Herceptin, then try for that ofcourse.

I do hope this has helped in some small way....
hugs,
pattyz (p.s. I am HER2+++)

Hi Jojo

Thabks for your response.

My original dx was Oct 03, the bone mets were dx'd Feb '04 with bone mets. (which I had prior to Oct 03).

They seem to do things a little differently here in the U.K. with regards to testing and treatments. I had my last bone scan in Jan 05 which was clear but no other tests so although I hope that I am in remission, I really have no way of knowing if I have mets elsewhere other than how I am feeling. That said at least this way I am able to get on with my life and live in hope and I am feeling as well as anybody can on Arimidex :-)

And yes, my onc doesn't want to give to me Herceptin until if/when I get another recurrence.

xx

Hi Patty

Thanks for your reply.

I'm not sure that I do really want to take Herceptin yet but of course if I could be sure that taking it would keep me alive for longer then I would fight for the Herceptin now, but that is the $6,000,000 dollar question isn't it.

How are things for you at the moment, do you have any scans coming up?

Love Ally xx

Yes, indeedy! the big $$ question is right.... but I hope my body NED state gives you something to grab onto.

I have been very responsive to the CA27-29 marker and it remains low normal. If it shot up, or I had any other suspicious symptoms, my onc would order more kinds of tests/scans.

I am on Temodar/Xeloda for my brain mets...... hoping for some kind of response. Started my second round today and will have MRI on the 29th to see if this is working or not. I will be glad for any kind of response ie: stable would suit me. I have had severe dizziness 24/7 that began Aug 12. But four days into this chemo combo it lessened a bit. Didn't have the tipping over events anyway. The largest met at moment is on pons/brainstem. Very worrisome to say the least.

I was also given something to help with the dizziness and it also seems to be doing a good job. Just must still be aware of what I'm doing/moving etc.

Thank you for asking xoxoxpatty

Hey Patty,

Your words about NED in the body certainly did give me something to think about, thank you.

I didn't know that those brain nasties had started up again, I am really sorry to hear that but it seems like this lot of treatment could be doing it's work for you. I will keep you in my prayers and keep everything crossed too (even my eyes) for good results on the 29th.

I am ashamed to admit to burying my head in the sand when it comes to brain mets and I know very little about them. Obviously no mets anywhere are good news but is the pons/brainstem a bad place to treat?

Take care

Love Ally xx

Ally,
Keeping head in sand may be a great coping skill no matter what anyone says! I never suspected MY BRAIN tho' so was a surprise to me...

I had one treated on my pons before.....along with the 15 others at five different times..... so the cumulitive effect of the rads I've already had pretty much prohibits more of same without incurring permanent damage to brain.

The WBR now recommended would also carry much higher chance of leaving me with damage. So, will have damage with or without...causing death or high disability eventually leading to death.

Unless my lovely cocktail works for me. Or something similar.

Don't hurt your eyes dear girl! Thanks for the good wishes.
xoxopatty