1/7 PET/CT Results After 28 months on Gemzar - 1261472

slimer
Posts:43

Well, results not great but not horrible. Primary tumor no size change except SUV rose from 3.5 on last PET in March 2013 to 3.9.

Big change is 3 measurable nodules over 1cm spread between both lungs that have not been hypermetabolic since I began Gemzar in Oct. 2011. 2 of them have grown a few mm. and have become hypermetablic, one 1.7 SUV, & the other 2.2, not very high. The 3rd nodule remains the same and not hypermetabolic. But change, progression, nevertheless.

In addition, a new growth of 7mm was found in my middle right lung, a new one, but it is not hypermetabolic - yet. No spread anywhere else and all my lymph nodes are normal. When diagnosed, the first PET/CT had every single lymph node in my chest measurable and hypermetabolic, along with hundreds of small tumors in both lungs, many of which were hypermetabolic. The extent of my disease in my chest was why they gave me only 8 months to live. So with clear and normal lymph nodes, Gemzar is still doing something.

I asked my onc if we can just call it Stable, but he said no, this is Progression, but not "clear" progression, what he would need to call a definite halt to Gemzar. So we are doing another cycle, 3 months then another friggin scan.

He wants us to use the time to prepare me for entrance to a PD-L1 trial that Kaiser is hosting - Hoffman/La Roche MPDL3280A. My onc thinks with my low tumor load and excellent health that I would be a prime candidate if I express enough of PD-L1 ligand for a probability of response. That probably will require another biopsy. So we shall see, He sent me home with all the trial materials to read along with consent forms. I am definitely at a turning point and just am happy that at the end of this next cycle, results good or bad, I will then have had 31 months without having suffered from all the noxious side-effects of chemo treatment and still feeling as though I don't even have Stage IV NSCLC

Also, FISH for ROS1 came back Negative. I appreciate my onc's try.

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Reply # - January 11, 2014, 07:42 AM

catdander
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Good Morning Slimer, I'm sorry the run is about over and still so impressed that you've had such a good response. I'll plan for you to continue to respond well to whatever treatment you move to next. Am I mistaken that gemzar was your first treatment?

I hope you have some time for some worry free time in the next 3 months but know it's not always so.

All best,
Janine

Reply # - January 11, 2014, 11:08 AM

slimer
Posts: 43

Catdancer,

It certainly does look like the end of the Gemzar road is approaching. And yes, it was my first line. But I am going to throw some new stuff at it that in vitro and in one Phase II clinical trial appear to potentiate Gemzar. What the hell do I have to lose! Maybe I can extract another "stable" from it on the next scan.

In any case, I was so diseased at Dx and terrified by the 8 months my first onc gave me, that I am just happy I made it this far without all the debilitating and system destructive effects of other chemos. I will make it 31 months on Gemzar alone at the next scan, and that rivals what the luckiest get from targeted therapies, without the yucky, disgusting side-effects of something like Tarceva. And if I can get into a PD-L1 trial where I actually get the immunology, maybe I'll get lucky again. So not giving up and folding my tent yet. Still live symptom free and feel absolutely normal. So I count my blessings.

All my best to you and D.

Reply # - January 11, 2014, 05:43 PM

Dr West
Posts: 4735

slimer,

It sounds to me like you and your oncologist are giving this a very thoughtful perspective. I think it's fair to be asking if this is clinically significant progression and that it's quite believable that it is, but if you have to ask, it's not dramatic. And knowing where you started, it's clear that you have a perspective on how it might otherwise be.

At the same time, your history illustrates that it's not just that you have a very indolent cancer that would do well no matter what you do or don't do. Though your situation is more reminiscent of the kind of response and progression we often see with a targeted therapy in someone with a driver mutation. In such cases, when you see relatively minor, slow progression and are still with less "tumor burden" than you started with, continuing the same agent is a strong consideration. Obviously, the opportunity for a clinical trial often limits your ability to do that.

I agree that it makes good sense to consider an immunotherapy trial. If there is a situation that lends itself well to an immune checkpoint inhibitor if available, especially since you can always pursue standard (off protocol) treatments later.

Good luck.

-Dr. West

Reply # - January 11, 2014, 10:40 PM

slimer
Posts: 43

Dr. West,

Thank you for your thoughtful response. I have absorbed it and its core meaning.

Perhaps you would be kind enough to give me your impression of something on the written PET/CT now that I have had time to settle down and read it carefully. This radiologist (and I had this radiologist for my 1/13 PET when he found renewed shrinkage), states something I have not seen before and I'm not sure of its meaning. In the Findings, he states in relationship to my primary that it "contains hypermetabolic focal areas with maximum SUV of 3.9 versus 3.5 on the prior study." Is he saying that there are "focal areas" with a SUV 3.9, higher than the surrounding mass, the rest less, or is he saying that there are only certain areas, focal areas, that lit up at all and they had a 3.9 SUV? Or is impossible to know. I have never seen the use of "focal areas" mentioned in relation to my primary.

Reply # - January 12, 2014, 11:06 AM

Dr West
Posts: 4735

I'm sure that the presumably maximum SUV of 3.9 refers to a specific area and not many -- each spot would likely have a different max SUV (so if there are several spots, the others are less PET avid). There can sometimes be ambiguity about whether that SUV refers to a maximum among several areas or just an isolated spot, but I can't say that from what you've got here. I think your best bet is to discuss it with your oncologist to clarify.

Good luck.

-Dr. West

Reply # - January 13, 2014, 06:22 PM

Dr West
Posts: 4735

Actually, subsequent work with these markers has indicated that they are not actually helpful in predicting which patients should receive which chemo. Though there may be individual patients in whom the markers might correlate with particularly good results, trials like MADeIT, presented at ASCO 2013, have demonstrated that populations of patients did just as well (actually better) with them all getting the same doublet compared with an individualized approach of specific chemotherapy regimens based on ERCC1 and RRM1 status.

-Dr. West

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