glass half full or empty?

[Pam P]

I haven't posted on this board for awhile, but I am a lurker. I was dx with inflammatory bc 6/01. Bone mets dx 9/02. I have been on navelbine & herceptin for bone mets for 1 year.

For me the navelbine wasn't bad to tolerate. My main issues were fatigue, constipation, low blood counts for which I took injections of aranesp & neupogen.

I just had a PET scan last week. Good/mixed news on the scan. No new lesions or sights of metastasis. The sites already involved, 4th rib & 4th & 5th vertebrae looked like there was "slightly" more activity in those spots. (A slightly higher SUV number from 10/04) My onc. thought it wasn't significant & thinks at that level of interpretation there is a certain amount of subjectivity about "slightly better or worse".

My CA 2729 tumor marker was a little higher than last done in November, it has ranged from 57-72 over the last several months, but again only slightly higher.

It's not the news I wanted on the scan-- I wanted NED, but this is good too or better than it could be.

The doc is taking me off the navelbine. And I will continue to get only herceptin & zometa which won't have all the side effects so my blood counts, fatigue, etc. should improve.

I'll have another scan in 2 months -- if the cancer doesn't get worse I can keep doing this...... if it gets worse, then it's chemo again.

I SHOULD feel happy that I'm able to have a break from chemo. I know some people do well for quite awhile just on the herceptin. And, I know many have progression soon & are back on chemo. I'm afraid that the "slightly higher activity" in the scan is significant & a sign that the chemo wasn't working and the cancer is on the move.

I SHOULD celebrate the moment, but I can't find a way to do that - it feels like I'm dragging a ball and chain around.

I SHOULD have hope for the future, but I just feel scared.

Thanks for being here, understanding, and listening.

Pam

[al from canada]

Dear Pam,
I think your results are great. (I don't put a lot of stock in tumour markers)
I also think the chemo holiday is a good thing. If you were Navelbine for a year you must have tolerated very well. You never said why you went off it but I assume that it was because it had worked on the mets. Even a short break from the Navelbine, before the cancer becomes immune to it, will allow your body to "reset" itself and leaving Navelbine a future viable chemo option. It's great not to use-up your chemo arsenal! As well, there is no evidence so far that herceptin isn't doing its job.
Enjoy the vacation,
Al

[Kristen]

Pam P,
i am not a mets patient so I feel a little out of place here. I guess and I don't know for sure, but try and celebrate the good news. I hope in 2 months you find yourself NED. Enjoy the off time and rest as Al said and be well. Take Care k

[Lolly]

Hi Pam, I also think your response is very good, considering how hard IBC is to contain, and it appears Navelbine/Herceptin/Zometa is doing a good job in that area. You're probably feeling underwhelmed in part due to being just plain tired out emotionally and physically, and this should improve as you bounce back from the chemo, so for now just try to accept that you can't look too far ahead yet, but as the days go by and you regain your strength, you'll be feeling much more opptimistic and will be ready for what the scans tell you in 2 months.
Also, welcome back and thanks for sharing your story, as it surely helps others in the same boat.

Love, Lolly

[Pam P]

Thank you for your replies & words of support.

I want to know what to expect and I want to know now. And yet I'm afraid to know at the same time. And maybe that's what most of us in this situation feel.

I'm praying that I will be one of those people who can maintain on herceptin/zometa only for a long, long time without progression. How realistic is that?

Thanks. Pam