No Mutations? - 1252307

kate0228
Posts:36

Well, Tony is EGFR-, ALK-, ROS1-, KRAS- ....any other suggestions?!

Forums

Dr West
Posts: 4735

Those are really the ones that have any clear impact on treatment decisions right now. You could get a consultation at someplace like Mass General or University of Colorado for a big battery of rare mutations, but the implications in terms of what to do with that information, if you happen to find one, are not at all clear. Most likely, the leading option would be a clinical trial through that center (and there's also the risk that his significant medical history would render him ineligible for a trial).

Otherwise, we just usually consider that a good workup for "driver mutations" and move ahead with chemotherapy-based options...

-Dr. West

Jazz
Posts: 279

Kate,

Was Tony tested for PDL-1 expression? He could still try anti-PD1 therapy if his tumor expresses that. See link for locations near you:

http://clinicaltrials.gov/ct2/show/NCT01295827
I mention this because FeistyD, a member of this site, has no mutations either, but her tumor happened to express PDL-1 and she's had great success with the above trial.
http://cancergrace.org/topic/anti-pd-1-immunotherapy-clinical-trial-upd…

Also, was he tested for a BRAF mutation? There's a trial for that at UC Irvine (and I don't know where else).

Good luck,
Jazz

kate0228
Posts: 36

Thanks. I think finding out he had no mutations stunned me more than his cancer diagnosis! I guess I just automatically assumed he would have one of them. Crazy me for assuming anything when it comes to lung cancer!

kate0228
Posts: 36

Tony's scan indicated stable and maybe even slight improvement. Doctor would like for him to stick with Taxotere but maybe at a lower dose. What has your experience been with lowering the dose on people who didn't tolerate the drug very well? Do they still give it every 21 days at a lower dose or do they give it in closer intervals at a lower dose? Just curious if people tolerate a little better with the adjustment.

Dr West
Posts: 4735

I think it's very reasonable to cut back on the dose and give every 21 days, or perhaps to go out to a 28 day schedule. More often I've cut back the dose and kept the same interval. Not surprisingly, the lower dose is typically better tolerated.

Good luck.

-Dr. West

kate0228
Posts: 36

Taxotere was much too harsh for Tony and he refused to go back on it. It would knock him down for 11-12 days and by that I mean he was in bed that whole time. He had several major side effects and just felt like this drug was too much. He started on Abraxane Monday and so far, so good. He hasn't felt bad at all and is maintaining his normal pace, which is working ten hour days as well as keeping up with our 12 year old's school and sports activities. I love that he's not on steroids because they wire him out and he always has such a horrible steroid crash. He appears no different today than before treatment. Now the question is...will this stuff keep him stable. I guess time will tell.

catdander
Posts:

Good luck Tony. It's good to hear he's feeling so well on the treatment.

tikicat
Posts: 28

This is FeistyD. As Jazz says, I also have none of the main mutations, but I am doing very well on the Merck 3475 anti-PD-1 trial. In fact, I could go as far as to say this trial has saved my life. No one who doesn't know me would ever guess that I have cancer (the judge at jury duty seemed a bit suspicious). My clinical trial is still recruiting- http://clinicaltrials.gov/show/NCT01295827.

My doctor mentioned the possibility that not having the mutations may be one factor in my response (also, my tumors express a lot of PD-L1). He said that it's possible that this may be a factor in why the drug is also having great success in fighting melanoma, another type of cancer that has many mutations.

catdander
Posts:

FeistyD, I'm so glad to hear you're continuing to do so well! If you don't mind me asking, how often do you need to go in to see the trial doctors?
Thanks,
Janine

tikicat
Posts: 28

I have an infusion every 3 weeks and scans (brain MRI and CT scans) every nine weeks. So far I have had 12 infusions.

Dr West
Posts: 4735

That's really terrific. I'm hopeful that more of our patients will have their biggest problem be that people don't believe they actually have cancer.

-Dr. West

wadvocator
Posts: 79

Feisty,

With the clinical study, how long are you suppose to have injections.

Thanks.

tikicat
Posts: 28

The trial is for two years, unless something changes. I have done eight months. Anti-PD-1 is being shown to have a durable response:

Durable Cancer Regression Off-Treatment and Effective Reinduction Therapy with an Anti-PD-1 Antibody.
Lipson EJ, Sharfman WH, Drake CG, Wollner I, Taube JM, Anders RA, Xu H, Yao S, Pons A, Chen L, Pardoll DM, Brahmer JR, Topalian SL.
Source
Authors' Affiliations: Departments of Oncology, Urology, Dermatology, Pathology, and Surgery, Johns Hopkins University School of Medicine and Sidney Kimmel Comprehensive Cancer Center, Baltimore, Maryland; and Department of Internal Medicine, Wayne State University School of Medicine and Henry Ford Hospital, Detroit, Michigan.

PURPOSE: Results from the first-in-human phase I trial of the anti-programmed death-1 (PD-1) antibody BMS-936558 in patients with treatment-refractory solid tumors, including safety, tolerability, pharmacodynamics, and immunologic correlates, have been previously reported. Here, we provide long-term follow-up on three patients from that trial who sustained objective tumor regressions off therapy, and test the hypothesis that reinduction therapy for late tumor recurrence can be effective.EXPERIMENTAL DESIGN: Three patients with colorectal cancer, renal cell cancer, and melanoma achieved objective responses on an intermittent dosing regimen of BMS-936558. Following cessation of therapy, patients were followed for more than 3 years. A patient with melanoma who experienced a prolonged partial regression followed by tumor recurrence received reinduction therapy.RESULTS: A patient with colorectal cancer experienced a complete response, which is ongoing after 3 years. A patient with renal cell cancer experienced a partial response lasting 3 years off therapy, which converted to a complete response, which is ongoing at 12 months. A patient with melanoma achieved a partial response that was stable for 16 months off therapy; recurrent disease was successfully treated with reinduction

kate0228
Posts: 36

Good for you FeistyD! I admire people who have the courage to think outside the box and try something new where there are no guarantees! That takes a lot of courage, strength and faith!