Still NED....what next?

Hello!
Just wanted to report that I had another PET scan on Wed & got the result back yesterday. Still NED! Yipeee! I can't believe it's been a whole year since that stubborn spot popped up in my liver again & that it's taken RFA + 34 weeks of chemo to get to NED again. The past 2 scans have shown that the liver is all cleaned up & has stayed that way. That's the good, great, wonderful news...
But, as Lisa said, "there's always a but..." . Since NED 9/03, all my PET scans have shown lung nodules that pop up in different places in my lungs, always "subcentimeter, no increase in FDG uptake" & "too small to biopsy". The nodules don't "behave" like mets- growing while off chemo, then shrinking & disappearing while ON chemo, like the liver met does.
For expample, back in July, the PET scan showed the liver NED, but reported two small nodules in my lungs. This most recent scan shows the liver still NED (YEAH!), & the two previous nodules are gone, but two NEW ones have popped up, in different places, again, "subcentimeter,no increased FDG uptake & too small to biopsy". We're anxious to identify what those nodules are b/c I'm considering having the "problem area" in my liver resected out. I certainly don't want to go thru such a big surgery to my liver, if there's any chance that those mysterious nodules are mets.
Anyone have any ideas? Experience anything similar to this?
In the meantime, Radiology is reviewing my scans over the past 2 years to see if they can identify any kind of pattern or if it's completely random. For now, I get a break from chemo! Yipeee! Time to grow some hair!
Oh, one other question...I'm looking for a trial that I might be approriate for,combining maintenance Herceptin w/another targeted therapy.Any ideas?
Keep the Faith everyone!
Prayers, Faith & Courage~
Jessica

Hi
I just wanted to say CONGRAT's on the good news !!!!!!!!!!!!!!!!!!!!!!!!!
I don't have any experience with liver or lung met's. But I am sure someone on this board will be in touch with you.
God Bless
Bonnie T

Hi
Congrats on your good news. I can't be of much help re: mets to liver and lung since I've had neither-- at least so far !!! did have micromets to nodes.
Anyway, I have a questiond to ask you.
What is NED and what is FDG ??
I'm a bit new to all this lingo. Thanks.
Carol

Hi,

NED is no evidence of Disease and the other, I don't have a clue...as to liver mets...well, yes, I guess you could say I have uh ummm. "experience" first being diagnosed with them in April of 1999...I have watched them come and watched them go, watched them increase, watched them decrease, checked out my ct scans and measured them with ruler for myself..ha ha, yes, I know them well.

In my experience, using herceptin alone coupled with a healthy diet and good supplement plan wipes them back every time...sad but true, I even have COLOR pictures of my liver with the white milky/lacey looking surface lesions on them. Liver spots don't worry me too much any more and seem to be par for the course if you are her2+++. If you know what your tumor markers are (especially CA 27/29 and the serum her-2), you can wipe the markers way down and keep the liver lesions from coming back by being certain that you take enough herceptin on a frequent enough basis to stay "NED"

I would DEFINITELY NOT do any SURGERY to the liver for spots..no way.

Have you tried Co-Q10 for lungs in conjunction with herceptin. I do not have lung mets, but I help many people with cancer, especially ER-PR-her-2+++, and I had this one truly remarkable woman who despite having colon cancer mets to the liver, lungs, bones and pancreas, lived an amazing high quality of life for 2 years after DX using a basic supplemental regiment that included moderately high doses of pure magnesium, Vitamin A&D in fish oil, zinc, a multi, olive leaf, and Co-Q10. Despite a CT scan that showed more than 90 percent of her lungs and liver covered in mets, she walked outside every day for 30 minutes and in general, lived her life till she was given an accidental overdose of meds in the hospital for something else and died. She did not die from the cancer and she felt the co-Q10 really helped keep her breathing well, despite the lung mets--she never even required any assistance oxygen. This is just anecdotal, but I watched her live for such an incredible time, unbothered by spots...she was also not from this culture and did not seem to share the "fear" of spots that we have embedded in our brains. At one point, I had 12 lesions the size of nickles, quarters, and dimes in my liver and only one of them bothered me...the one that encroached on the small space inbetween the duodenum and the small intestine...which of course, was serious as had I not gotten to the herceptin and as my case was inoperable, I would have most likely died due to obstruction or hunger as when I would eat it would take HOURS for my food to drip through the tiny opening..like a clogged drain. This is the main concern with tumors and lesions in critical locations, but as long as the lesions aren't doing too much obstruction, I would not have surgery and would explore uses of Herceptin dosing strategies and dietary and supplemental intervention only. I have not had any chemo since 1998...just herceptin off and on since 1999 and am now on regular herceptin every 6 weeks. Fyi, Gina

[StephN]

Hi Jessica -
You wrote:
"Oh, one other question...I'm looking for a trial that I might be approriate for,combining maintenance Herceptin w/another targeted therapy.Any ideas?"

I am assuming you have been/ are on maintenance Herceptin. The only other targeted therapy that might be effective against HER2 cancer activity is Lapatinib that I know of.

Great news that you are deemed NED and can get off chemo - hopefully for a LONG time! Would be curious as to what you are doing now that chemo is finished.

Thank you for sharing your great news jessica, we are all so haappy for you! And it is so inspring. I have some weird lung spot too, teeny tiney never change much and yet the reports always say too small for FDG, but probably mets or CT can't determine, but probably mets. I never know what to think about it all. My liver and nodes wiggle a lot, but never these. I'm excited that you have radiologists taking the time to evaluate 2 years worth, who know what helpful insight could come of that. Kudos to them.

Steph mentioned lapatinib, whcih all of a sudden i can't remember if that is Avastin or not. That is what i was going to suggest was a herceptin/ avastin trial. Gina has good advice for exceptional self-care with herceptin. Not only does it really help, but it makes us feel as if we are in some control and we are not sitting ducks.

Keep us informed and CONGRATUALTIONS!!!!
love, joy

Hey Jessica, CONGRATS!

The only targeted therapy with herceptin are the vaccine trials. The one in Seattle may suite your needs because they like you to be NED. It's also a HER2 based therapy.

Good luck,
Al

[Esther]

There is a clinical trial combining Herceptin with Iscador, the Mistletoe extract you are injected with. I believe it is somewhere in the East Penns?

I have now been on Herceptin and Iscador only for 6 months, and am stable, NED without chemo. Iscador has been working great for me. During one period when I ran out of the vaccines, my liver enzymes and CA 27-29 began to slowly climb, as soon as my new supply arrived and I began my Iscador injections, the liver enzymes and CA 27-29 began to slowly drop again.

You need an MD to order the injections for you.