Good news and not so good news...

[Rich66]

History below at link.
But basically...PET/low dose non contrast CT suggests:
Much insulted liver as free from activity as 2/7/11. Yayy!!

But....

Stubborn left lower lobe lung met (down to one) seems to be going strong. Although I have some questions about the measurement accuracy (always do) this may be a too close to home rendition of my oft mentioned suspicions that multiple met locations can have very different behaviors.
Hard to argue with the contiunued great results in the liver...the issue that almost swept a jaundiced, confused mom away in '08.
And a unique weekly Zometa approach seems to have removed the C4 spinal met from the equation...hopefully helping the larger picture somehow too.
But damn if that big lung met isn't turning out to be the focal point.

So....biopsy of some sort to discern the difference? Seems unlikely enough could be had for chemosensitivity testing.

It's probably too big a met to recruit someone to do local therapy like ablation etc...especially with systemic mets.

Roll the dice and add a random agent to the regimen? She's on Tamoxifen, low dose xeloda (3), Cytoxan, Tykerb (4), metformin and supplements as listed. Maybe add herceptin in case it's a hyper her2 thang?
Oy......

6/8/11 PET/CT: Lung mass from 4.1 x 3.4 (or 4.4 x 4.0) to 5.8 x 4.4 cm at maximum axial dimensions. SUV max from 11.6 to 14.7. No mention of extending into chest wall. Relevant to measurement? No other nodules noted.
2 Retroesophogeal lymph nodes insignificant size change, but SUV max from 5.4 to 8.8. Significant or due to more FDG and slightly longer wait before scan??
No uptake in liver!
No uptake in C4 (spine)!
Obviously a difference in behavior between liver and lung.

[Jackie07]

Rich,

Glad to hear the good news about the liver. I would think the tumor in the lung would have responded the same way. As long as it's not enlarging, I'd think it's safer to continue the course.

Have you considered getting 2nd opinions from other specialists?

[Rich66]

Inserted relevant data into initial post.

If results are to be counted on, suggests growth in lung met.
Just got results late today...digesting...

[michka]

Oh Rich, I am sorry about this lung met although there is also good news.
I don't know what to say but yes you could put Herceptin back in for synergy with Tykerb unless there was a good reason for taking it out. Is Halaven an option? My thoughts are with you. Michka

[Trish]

Fantastic about liver. Given the jaundice in 2008 that is an extraordinary result-what do you think was the essential ingredient in the success? My liver mets are on the increase so I am very interested.
Not so good about lung. Does Halaven have superior results with lung mets? Good luck with finding the ingredient to contain that lung met-you are such an diligent researcher and sharer of your researches that I am hoping you will find an angle. Your mom is certainly very lucky to have you on her team but I feel we are lucky that you share so generously with us.
Trish

[chrisy]

Rich, I think that is mostly good news for sure - just curious, did the report actually say "much insulted liver"? I know mine feels that way.

If the lung met is stable, that is good and staying the course would not be unreasonable. But I totally understand why you would focus on the one that seems to be getting away while the others have been brought to heel.

I don't know about throwing random things at it - although with all the "interest" in these approaches I understand the temptation. Instead, can you get a biopsy of the baddie? Even a small one could be tested for changes in ER/PR/Her2 status and give you more information. You want to know what you're dealing with.

[Rich66]

Heh.."much insulted" is my characterization...although it's not much more odd than some of the medical terms used.

Just to clarify, if the latest read is accurate, the very uncooperative lung nodule has increased. I have some question over the discrepancy between the previous read of the 2/8/11 scan and the current read/reference. The previous read listed slightly larger size than how the current read mentions it. I guess each radiologist redoes the measurements when they compare scans. Gets a little confusing. The report from 2/8 also mentions it extending into chest wall in a way that I thought made it harder to measure. This report makes no mention of that. Measuring odd shapes in the real world seems subject to some variability. But...whether the previous size was roughly 4.1 x 3.4 (current read)or 4.4 x 4.0 (previous read) comparing either to the current estimate of 5.8 x 4.4 cm suggests growth.

If I had to guess what the largest contributor is to the liver calm, probably little ole Tamoxifen. But a bit hard to tell given she is on a variety of things on the metronomic side.
Really hate to change what's working there. Seems like it would be better if something could be added to address the lung tumor and nodes. Despite continually borderline negative Her2 FISH, Mom did have a period of calm on only Herceptin in '09. When there was slight progression on that, Navelbine was added and her wbc counts were not allowing a normal Navelbine schedule..things seemed to get significantly worse in liver after that...so it was thought Herceptin wasn't worth keeping. Wound up on Tamoxifen and some supplements for some time and things calmed down to a surprising degree...especially in the liver. Some progression in the lung prompted a switch to Tykerb/Femara..and things, especially the liver..acted up again. So...here we are with good results again in liver and lung acting up again...although there were other lung nodules along the way that are no longer showing up. I've been told that it could be the stubborn lung tumor could be a very Her2+ or triple neg variation. So..a needle biopsy might glean that info. And given the size, it might be possible to get a sample for chemosensitivity testing...although I have the sense that would be fairly invasive.
Probably the easiest thing to do short term would be to add Herceptin. But the poor results when it was combined with Navelbine treatment makes that cloudy.
Anyone had a lung needle biopsy? It had been suggested a while back when we were looking at cryo for the lung nodule. But I asked whether that would make a difference for cryo and never heard back. Well...since most ablation options seem to be off the table due to size and systemic involvement, maybe some kind of biopsy is prudent. If you've read this far..thank you

[chrisy]

Yeah. Pretty frustrating to have the numbers and interpretations of the diagnostic tests be moving targets. As I just said to someone else, I'm waiting for the darn Star Trek medical tricorders to get FDA approval. (and while they're at it, make it the ones that can not only diagnose but cure the problem!) In the meantime we have to do the best we can with the imperfect tools we have.

Reading all the way to the bottom of your post...the only thing that is clear is that truly there has been no clear pattern. Trying to guess based on response of a variety of problem areas to a variety of theraputic agents is tough.

If you can reset with some "actual" data, say a fine needle aspiration that might be very helpful. I don't have any experience with that in the lung but perhaps others will chime in. I have had a liver biopsy (and am getting ready to do that again) and it was pretty tolerable.

For you and your mom it may be FAR more tolerable than all the uncertainty and may clarify a path forward.

[Joan M]

Rich,

Perhaps it would be good to add Herceptin again. Despite your mom's treatment failing under Herceptin before, the combination of that drug and Tykerb has been shown to give a superior benefit. This might be an easier solution without upsetting the apple cart. The shrinkage in the liver is going in the right direction, which is really good.

I'm also borderline HER2, but my test results were considered borderline HER2+, not borderline HER2-, which you noted.

Joan

[ElaineM]

I hope everything goes well no matter what the docs recommend.

[krisvell]

Rich,
Wishing your mom gets the right treatment for her. I'm starting to learn it's not a perfect science; a real balancing act. Luckily, we have the wisdom of the people on this site that share their experience and knowledge.
Hugs and Prayers,
Kris.......

[schoolteacher]

Rich,

Sorry about your mom. Let us know what treatment is decided on. Thank you for all the information you give to this board.

Amelia