Still Surfin in D's Wake, but Board is Cracking - 1258079

slimer
Posts:43

I took my 70th Gemzar infusion in my 22nd month on it as single agent first line, and then had a CT. July is the two year anniversary of my Dx in July, 2011.

I think I now have the unofficial Gemzar record over D, except that D is NED and I have had my first progression. A small nodule that had been stable and not hypermetabolic since my inital Dx PET/CT grew 1cm. Always described as "adjacent" to the primary, it now has grown that 1cm into and joined with the mass.

My onc wants me to take advantage of this small progression (less than 20% on RECIST baseline measurements) to go for the Merck MK 3475 Anti-PD-1 trial. He thinks, if I have the protein, that my small tumor burden and the great shape Gemzar has left me in would be a big advantage. Gemzar can't last, so go for it now. Any other chemo he says will violate my Q of Life priority, and you can't hope to be a super responder again. Plus the median to progression is horrible on all my options.

I had some big reservations. You have be off chemo a month before the biopsy, and what if cancer takes off without Gemza?. And if I don't have the protein, then what, only a more toxic option. And what if the biopsy fails, I had 3 before they could figure out I had adenosquamos, and 2 collapsed lungs, minor, on the needle version.

So we decided to go for 2 more months, not the usual 3, and then another scan. If I progress further, I am forced to go for MK 3475. I have had these scares before, and they were resolved on the next scan, but I think this one with the nodule reactivating is real. But maybe shrinkage? maybe stability? We'll see. Another part of my argument to continue is that all my lymph nodes are normal size, so Gemzar still working. On my Dx PET/CT in July, 2011, almost every lymph node in my chest had adenopathy. So I'm content with the decision and grateful to my onc that he does listen to me, but he has refused a 2 on, 1 off schedule. I remain on a 3 on, 1 off, and maybe that is the right thing to do.

Forums
Full Archive

Reply # - July 19, 2013, 09:05 PM

Jazz
Posts: 279

slimer (where is your avatar, like on Inspire?) ---

It's terrific Gem has brought you this far, and I hope you can get more from it, if that's your wish. The Merck trial has some slots available for those who are PD-L1 negative, but they go quickly. So it might still be an option, although I believe progression does have to be measurable (20%). As for flaring once you're off Gemzar... does your onc believe that's a possibility?

Best of luck with the biopsy, if/when you go that route.

Jazz

Reply # - July 20, 2013, 12:21 AM

slimer
Posts: 43

Jazz,

Thanks for your response and questions. I would only enter the trial if I expressed PD-1. I've viewed the results available. I see on Clinical Trials that the majority are already moving to combining with chemo. So I get the feeling Big Pharma already sees that the responders are in main those that have it. MK 3475 would be the last ticket available if I have the protein, and that's the reason my onc wanted me to go for it before it closes.

I think the 20% can be met by again separating the small nodule from the mass. My onc can deal with that. He is in contact with the trial leader. The radiologist wrote it thus in the Impression: "Slight interval increase in size of the bilobed right perihilar mass. The more peripheral component of the conglomerate lesion has increased in size by approximately 1 cm." Note "the more peripheral component."

And I guess he feels the 2 more months on Gemzar will go against me. As to the flare, that's my gut feeling but my onc admits that a month off Gemzar to cleanse for the biopsy and time to get results would risk a futile return to Gemzar. But who knows for sure in this cancer game.

Are you on UCLA trial now or just keeping on top of immunology trials?

As to avatar, no criticism intended because I am still using XP SP 1 & 2 which is probably the problem, but I have a hard time with this site. Even my history has disappeared, and site will not let me edit it in any case. My Profile can be edited and I keep that up, and will update it shortly.

I had my 71st infusion today and as usual feel absolutely normal. Hard to walk away from feeling like a jet!

Reply # - July 20, 2013, 06:35 PM

catdander
Posts:

That's a real mix bag slimer. I'm sorry things are looking unstable but I'll keep my fingers crossed and my mind hopeful that whatever direction you go...or stay you continue to feel like a jet!

BTW, are you using your "forum profile" to make changes, there a "wordpress profile" also. You want to access by clicking on your avatar/user name. I wouldn't be surprised if the type of browser has an effect.

Janine

Reply # - July 20, 2013, 07:15 PM

Dr West
Posts: 4735

I think the probability of a rebound of rapid progression after several weeks or even a month off of chemo is relatively unlikely, but it's easier to predict if I know the patient and the "natural history", the behavior of the cancer, when not on treatment.

If you do pursue the immunotherapy trial, I hope it works very well for you. I hope you'll keep us updated on how you proceed and how it works for you.

Good luck.

-Dr. West

Reply # - July 20, 2013, 08:12 PM

slimer
Posts: 43

Thanks for your response Dr. West. I do base my fear of a flare on “natural history”, the behavior of the cancer, when not on treatment." Leading up to Dx biopsy and prior to treatment, I had an Xray which revealed the huge 8x7x6 cm tumor and hundreds of small tumors that looked like stars in the sky, then a CT, and then the Dx PET/CT.

Some months later when I was thinking a second opinion, I obtained my full record. In the notes, I read the statement that my primary and some small nodules had significantly progressed from the X-ray, to the CT, to the PET/CT. That all took place over a month and half. And I have to assume that the adenopathy in almost all my lymph nodes progressed, including a 2.5x1.3 hypermetabolic posterior peripancreatic lymph node (PT/CT), that I have yet to find a MD who even knows where it is.

So that early history of rapid progression with no treatment freaks me about leaving Gemzar now for the trIal while technically I still have not progressed 20%.

And Dr. West, do you feel you can comment on my other fear?: that a month or so without Gemzar and more progression however slight would create too much resistance for Gemzar and a return to it if I test negatively for the protein? I was most heartened that on the recent CT scan ALL my lymph nodes are normal by CT standard. My onc believes my presentation at Dx was due to lymphatic spread. So I fear lymphatic involvement once again during a hiatus, not just progression any nodules or the primary.

Reply # - July 20, 2013, 10:23 PM

Dr West
Posts: 4735

I'd say that rebound progression is something we've almost exclusively seen in the setting of a specific mutation associated with remarkable efficacy to a specific targeted therapy, rather than s more blunt instrument like chemo. Also, I tell my patients that if they're clearly getting worse a week or two after a treatment like Tarceva (erlotinib) or XALKORI (crizotinib) is stopped, we can revisit the decision to stop them and potentially restart them (insurer permitting, but definitely much less of a concern with a relatively inexpensive chemo).

As for whether a break will facilitate progression, I wouldn't think so. Time off of a drug tends to lead to a drop in the selective evolutionary pressure of cancer cells resistant to that treatment, sometimes correlating with resensitization to that treatment, if anything.

-Dr. West

Reply # - July 20, 2013, 11:35 PM

slimer
Posts: 43

Dr. West,

Thank you for what turns out to be your positive responses to my negative questions. Very interesting indeed! A whole new perspective. Worst case scenario to a best case scenario. You definitely changed my plans for making this a 2 Atavin evening before bed into a 1 Atavin will suffice evening.

Reply # - July 23, 2013, 05:08 AM

tracey59
Posts: 41

Dear Dr. West:

I just received the blood-test report and X-ray report and am very unhappy. I have been on Iressa since 7/July 2012 and the six tumors seem to have been stablized after initial shrinkage from July to August 2012; however the most recent reports show both the CEA and the size of the main tumor in my URL significantly increased. My oncologist told me to take a PETCT tomorrow morning and if other tumors have enlarged too, then I need to take new treatment. My questions are:
1. I noticed that a doctor said enlarged tumor may be caused by inflammation. Is that true?
2. Can PETCT distinguish an enlarged solid tumor vs. an inflammated tumor?

Many thanks for your advice in advance!

Best,

Tracey

Reply # - July 23, 2013, 08:37 AM

Dr West
Posts: 4735

With patients receiving immune-based therapy, we now sometimes see areas of known cancer enlarge before they shrink later, and if they are biopsied, enlarged nodules can just show a robust immune response. This is increasingly recognized and is known as "pseudoprogression". So that can certainly happen in patients on immunotherapy for cancer, but I'd have to confess that I think this is extremely unlikely that a cancer treated with standard chemo or an EGFR inhibitor like Iressa (gefitinib) or Tarceva (erlotinib) would enlarge due to inflammation, especially if treatment hadn't just been initiated.

Unfortunately, a lesion lighting up on PET scan could be either inflammation or cancer, and the PET/CT can't tell the difference reliably.

Good luck.

-Dr. West

Reply # - July 24, 2013, 05:35 AM

tracey59
Posts: 41

Dear Dr. West:

Many thanks.

I have another question: can lung cancer patients on Iressa or Tarceva take Resveratrol extract capsules? I have read the discussion in 2011 but just wonder whether there is any new research outcome on this issue.

I am indeed very grateful for your advice.

Best wishes,

Tracey

Reply # - July 24, 2013, 02:31 PM

dr walko
Posts: 102

Tracey,

The data we have still indicates that reservatrol blocks the enzyme (CYP3A4) that breaks down Iressa, which can lead to increased toxicity from Iressa. I would not recommend using them together.

Best wishes,
Dr. Walko

Reply # - July 24, 2013, 07:36 PM

tracey59
Posts: 41

Dear Dr. Walko:

Thank you so much for your advice! I actually bought one bottle yesterday and was about to take it but thought that I should have asked medical professionals. I am glad I did.

Dear Janine: thanks for your help on this matter!

Cancergrace is really a very helpful and wonderful webpage. I have learnt a lot from it. It makes me feel that I am not alone in the process of fighting against cancer. Thanks everyone!

Tracey

Previous PostNext Post