Mets under control - what now?

MichelleMoon · 11-14-2006, 12:25 PM

Hello fellow survivors,

I have lurked since being dianosed with Stage 4 lung mets in June. First, let me tell you how inspirational and informative many of you have been the last few months. When I'm feeling down, I pull up several of your notes about how long you've survived with mets...and I have renewed hope!

A bit about me...diagnosed at age 32 in Jan '99 with stage 2 node involvement. Proceeded with mastectomy, AC + T and rads. I really thought all this was behind me until I was diagnosed with lung/chest node mets in June '06. I was triple negative in '99...now I'm HER2 positive but still ER/PR-.

I just finished 18 weeks of Taxol + Herceptin with good response. Enlarged lymph nodes in clavical and lungs are normal now. My original 'big' 3.5 cm lung tumor is now 1 cm. My CA 27-29 dropped from 300+ to teens after 12 treatments. My onc is calling me in 'strong partial remission'.

How badly I wanted NED!!! I'll admit it weighs on me that there's still a tumor in there. My onc reminds me that, short of a biopsy, he has no way to tell if this contains cancer cells.

My oncologist plans to monitor me with tumor markers and CT scans every 2-3 months. I'll be receiving Herceptin every 3 weeks.

So questions and requests for the group...
When are PET scans ordered? Does this help determine any sooner than a CT when treatment is needed again?

Should I insist on also having the her2 serum tests if CA 27-29 has worked so far?

Is there anyone out there with lung mets who has kept this monster at bay for years successfully? How? I see lots of people with bone, liver, and brain mets, but not too many lung.

Many thanks. Health to all,

Michelle

jessica · 11-14-2006, 01:22 PM

Congratulations! That's great news to hear you've had such a successful response to treatment!
I've been StageIV since my primary dx in 2002 - liver mets & questionable lung nodules. I was initally followed w/CT-every 6wks while on clinical trial, but eventually every 12weeks while on regular tx w/TH. Now PET's every 12 weeks are standard for me.
TH also did wonders for me, & after 12 cycles I went from "innumerable mets" to NED...however, the CT scans still showed the masses, but the PET revealed that the masses were actually non-metabollic, SCAR TISSUE.
A PET is a reasonable alternative to a biopsy, at this stage of the game. If you've responded well to tx & your CT's have been stable,TM's are WNL (within normal limits) now is probably a really good time to get a PET. A PET will light up anything that's metabollic/alive, but just keep in mind that PET's are less accurate picking up things under .5cm. (27.29 vs. Her2serum? - I guess it's up to you-especially if you feel like they've been acurate for you, but I think the overall concensus is the Her2serum test is superior.
It's the end of the year,I'm sure you've met and SURPASSED your deductible-as I'm sure we all have for 2006 - may as well get all the tests we need sqeezed in NOW!

Congrats again! That's darn good news!

Keep the Faith~

tousled1 · 11-14-2006, 05:36 PM

Michelle,

You should definitely have your oncologist do the Serum HER2 test. First one is used as a baseline (under 15 is considered "normal"). After that it should be repeated every 12 weeks. At least that's what my oncologist plan is. My other tumor markers have always been low so I don't have much confidence in them.

MichelleMoon · 11-14-2006, 07:01 PM

Thanks for the advice about testing, Jessica and Kate. Even though a PET won't change my new treatment plan (Herceptin only), having (temporary?!) peace of mind through confirmation that this is scar tissue may be worth it.

I'm somewhat surprised my oncologist never mentioned the HER2 serum test. It seems many of you use it to check progression. I'll ask about that during my next appt.

Thanks again! Wishing you continued health and peace!

Michelle