Blue Skies in DC - 1246790

blue skies
Posts:69

Aug 14
I live in the Washington, DC metro area. Kaiser has standing agreements with a variety of cancer research centers, including Johns Hopkins and NIH.Terms of referrals for second opinions vary by your "plan." Medicare patient benefits are different from Federal Employee Health Benefit (FEHB) members. Because my onc didn't think my case warranted a second opinion, I paid out of pocket to see the FABULOUS Dr. Charles Rudin at Johns Hopkins and it was the best $600 I will ever spend.

Your local Kaiser team has a "Clinical Trials Coordinator" who, at your doctor's request, will "work up" specific clinical trial referrals on your behalf. Kaiser won't typically approve a Phase ! trial, except under special circumstances (like you're out of all other options but a VERY promising trial like the emerging work on immunological treatment paths). But Kaiser did approve the Phase1/1b BIBW/cetuximab trial for me. Patient safety and potential efficacy loom large in their decision process. And Kaiser will negotiate an agreement with a clinical trial study site that is not one of its routine partners. My wonderful clinical trial coordinator got all the way to the end of the process with the folks at Vanderbilt for the BIBW trial, when the MSKCC folks finally got it together so that I could participate there instead (easier commute via Amtrak).

The molecular testing is part of ongoing clinical studies under the Lung Cancer Consortium: Study 09-C-0103C (Prospective Analysis of Genotypes in Adults Undergoing Therapy for Lung Cancer) and Study #11-C-0096 (Pilot Trial of Molecular Profiling and Targeting Therapy for Advanced NSCLC, SCLC and Thymic Malignancies. Depending on the outcome of the testing, Dr. Giaccone and his team will recommend the most appropriate clinical trial option for me.

Potentially, 3 options in play: a MEK inhibitor trial at NIH, Dr Spigel's PD-1/PD-2 studies in Nashville, and the potential Phase 3 trial at Johns Hopkins that was reported by Dr Braehmer

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Reply # - July 17, 2012, 06:07 AM

blue skies
Posts: 69

The good news: my right lung seems clear of cancer and continues to heal from concurrent chemo/radiation. The bad news: second follow up PET scan shows new areas of activity in C5, pelvis, and right adrenal gland "suggestive of metastatic disease."

My oncologist is looking for possible clinical trials, but we may have to rely on another line of chemo. Is there any specific advantage (balancing effectiveness and symptom profiles) between taxotere, navelbine, and gemcitabine.

I'm concerned that the next round of chemo will mean I will no longer qualify for future clinical trials. Any thoughts on that?

Reply # - July 17, 2012, 09:16 AM

double trouble
Posts: 573

Not a report I wanted to see. Blue Skies, I'm sorry. I hope you're not in pain from any of these mets. I know the others will address your questions soon, I just wanted to let you know you're in my heart. I wish I could take a walk on the beach with you right now to help us both with our perspective. Much love,
Debra

Reply # - July 17, 2012, 09:23 AM

catdander
Posts:

Hi Blue Skies, It's good and bad to hear your news. Like you said the more treatment you have the less likely you'll qualify for the Phase III trials. Certainly phase IIIs have shown to be most promising but with pd-1 and radiation treatment trials for slow moving or partially responsive cancers those understandings seem to be changing quickly. Don't miss the webinar July 19 with Dr. Mehta, info here; http://cancergrace.org/lung/2012/07/01/webinar-july-19th-novel-radiatio…

I don't think you can know going in where you fit into the efficacy and QOL balancing of the 3 treatments you mention. I'm glad D got the chance to try gemzar before taxotere because the side effect profile is harsher with taxotere and gemzar worked. I'd think it would depend on how eager you need to be for efficacy compared to how much toxicity you can handle.

I'll send an email out to one of our docs so you will get an answer in the next 12 hours at most.

As always you remain in my thoughts,
Janine

Reply # - July 17, 2012, 09:32 AM

JimC
Posts: 2753

Hi blue skies,

Apparently Janine replied while I was writing this, but I'll post it anyway:

I'm sorry to hear about the possible progression. Among the three chemo agents you mentioned, taxotere is the one which has been most tested in the setting of second- or later-line treatment, and is FDA approved for that use. And although it's a taxane like the taxol you already received, there is evidence that patients can still benefit from it after taxol use. It can be more difficult to tolerate than the other two options.

Neither navelbine nor gemcitabine is FDA approved or extensively tested in this setting, but some patients do benefit from their use.

Since you've had several lines of therapy already, availability for trials will be on a trial-by-trial basis. Some have no limits on pre-treatment while there are others for which you may already fail to qualify. That certainly can be a consideration when deciding on this next therapy; each of the three chemo agents would be available after a trial, while some trials might not be after another line of standard chemo.

JimC
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Reply # - July 17, 2012, 10:01 AM

Dr Spigel
Posts: 2

Each of those agents (docetaxel, vinorelbine, gemcitabine) are very reasonable choices. I routinely use those as single agents in the third, fourth, and beyond settings. Sometimes I will also consider returning to erlotinib if it's been some time since your initial treatment.

It is true that every treament choice potentially impacts eligibility for a trial down the road, but I think its best to focus on the issue at hand. Ideally, if a trial (phase I/II or III) were available, that would be my first choice. The PD-1 from BMS is exciting, but there are several other PD-1/PD-L1 agents in phase I development that one could still get access to in a thrid/fourth/beyond setting if other eligibility criteria were met. Unfortunately these trials are not always readily accessible, so treating with standard agents like docetaxel, vinorlebine, gemcitabine) is the next option.

Of course every person is unique, so a particular therapy and it's potential benefit/risk should be discussed with your doctor first (sorry...my first post...so have to have that disclaimer)

Hope that helps a little.

Reply # - July 17, 2012, 10:35 AM

catdander
Posts:

Dr. Spigel, Thank you so much for such a speedy and useful response. No apologies necessary the disclaimer it's very reasonable.

And

WELCOME to GRACE!

Janine

Reply # - July 17, 2012, 10:44 AM

blue skies
Posts: 69

Thank you all! Debra, I'm taking a virtual walk on the beach with you and trying to follow my own advice to you and others about taking a ddep breath and dealing with the challenge before me (us). I do not have any pain (these new mets were a cojmplete surprise to me) and the PET confirms that my lungs are continuing to heal (and are feeling better little by little). Will get an MRI to assess the skeletal "mets."

Thank you, Janine, for sharing D's experience with Gemzar.

Jim C! So glad to have you back as an active contributor. I feel better already!

And thank you, Dr. Spigel for your perspective in clarifying that the choices are all "good" ones...and especially as single agents. Always a good idea to add a disclaimer!

As of this morning, my oncologist has agreed to restart Tarceva as we continue to look/wait for a clinical trial (for as long as that continues to be a reasonable course of action).

One trial suggested by MSKCC is open in Detroit and focused on CO-1686, but I am also waiting to hear from Johns Hopkins about when a pd1 antibody trial might open up again.

I will keep you posted as developments warrant!

Reply # - July 17, 2012, 10:54 AM

marisa93
Posts: 215

Blue skies, I just wanted to say I'm sorry to hear about the possible progression and send you best wishes for your next treatment choice. Thinking of you.

Lisa

Reply # - July 17, 2012, 12:53 PM

Dr Spigel
Posts: 2

I don't want to use this forum inappropriately, but I can't help but suggest to you and your doctor to consider contacting me as we have potential PD-1/PD-L1 opportunities in Nashville. Feel welcome to email me at dspigel@tnonc.com

Reply # - July 17, 2012, 01:21 PM

blue skies
Posts: 69

Thanks! My oncologist and I are looking for appropriate clinical trials and know that there are some that are moving toward enrollment that may not appear on the NCI website. After reading your earlier post, I used the PD-1 and PD-L1 "key words" to search the clinicaltrials.gov site to see what was out there.

GRACE faculty members often mention a variety of sites and investigators -- including their own -- who are moving out on new trials or treatments so that those of us with an interest can go looking for what often seems like a needle in the haystack. Dr. Weiss' recent posts about his work to establish a study of the concurrent (?) use of radiation and Tarceva is one such example.

Thanks again!

Reply # - July 17, 2012, 10:35 PM

catdander
Posts:

Well it certainly doesn't hurt my feelings to hear about such promising trials as pd 1 in Nashville from the trialist himself. As you can see below that my husband has squamous cell. We are in Birmingham and I think I could get him as far as Nashville or Atlanta if the time comes and is right.
Thanks again,
Janine

Reply # - August 14, 2012, 11:01 PM

blue skies
Posts: 69

I could not be more grateful for the GRACE faculty, moderators, patients and caregivers who share so much valuable and up to the minute info and encouragement that is so critical to people in our circumstances.

Upon diagnosis, I stumbled on to this website and spent months as a "lurker," absorbing all the information posted here by the faculty and by Ned, and Joe, and Jim C, the irrepressible Laya and so many others. Having been told the likely prognosis was 9 to 12 months, I was ecstatic to find people who had survived up to five years and to see how many ways they could keep the beast at bay.

This site helped me understand what my doctor was talking about and at a technical level that I wanted and needed to understand so I could be confident that I was doing everything one person could do to have the best chance of extending both quality and quantity of life...and hopefully see my two children off to college.

Being acutely interested in my own circumstance, I could be the advocate that Jim had been for his wife and bring the most current thinking, science, and practice to my medical oncologist who treats cancer from soup to nuts and does a very good job of it.

Because of GRACE, I have a team of world class cancer experts offering me insight. I can pull up the wisdom and experience of the GRACE faculty to help understand and weigh the options: Cyberknife or WBR? Stop Tarceva on progression or continue in case it's still helping? Current thinking on post chemo/radiation consolidation therapy? What is the most promising research reported at ASCO and what to watch for?

I have a great medical oncologist, a rock star radiation oncologist, leading researchers that I can email for advice at Johns Hopkins and MSKCC...and now Dr Giaccone's team at NIH and Dr Spigel, who highlighted the PD1 opportunity. I feel like the luckiest lung cancer patient in the world!

Reply # - August 14, 2012, 11:04 PM

blue skies
Posts: 69

Jazz, I am hoping we can both take advantage of the PD1 trial! We'll have to compare clinical trial commuting strategies and experiences. I continue to enjoy following your progress and look forward to hearing what's next for you!

Reply # - August 15, 2012, 01:35 AM

certain spring
Posts: 762

Just wanted to say good morning Debra and hope the MRI passes off peacefully. I always like it when they talk to me through the glass and say "You're doing well!" It's not only small children and animals who respond to praise :)
BlueSkies, very glad to hear from you - I was looking out for your news. Wondering if we might continue the conversation on a new Blue Skies thread (or there is a "Community Updates" thread at http://cancergrace.org/topic/community-updates/page/3/)?

Reply # - August 15, 2012, 03:21 AM

blue skies
Posts: 69

Certain Spring! I've been looking for you!

With the brain radiation, they have me on a course of decadron. As you know, it makes me highly energetic and productive. Over the past 6 years, I have been letting things pile up in a spare bedroom and an entirely too large basement. Well, that stuff is HISTORY now! Everything that should have a place, has one and is in it...or will be before the week is out. I know that you can well imagine....

And, as you can see, after having neither the energy nor the will to engage on line for about the last six weeks, I've been on a tear overnight! Hoping to let the keyboard cool off for a while again. Will check back in (maybe on my new thread) when I hear back from NIH about next steps.

Hope all is well with you!

Reply # - August 15, 2012, 05:28 AM

certain spring
Posts: 762

I think the wonderful Janine, when she comes online, should be able to split the thread so that you (BlueSkies) have one of your own and Debra's continues pretty much uninterrupted. Really pleased to hear from you.

Reply # - August 16, 2012, 01:32 PM

laya d.
Posts: 714

Sending you lots of love blue skies. . .Continued best of luck with your treatment. . .

Laya

Reply # - August 17, 2012, 04:50 PM

double trouble
Posts: 573

No worries! Hijack as needed.

I posted this on the New New Plan thread, but in case you didn't see it there... MRI was clear.
Debra

Reply # - August 18, 2012, 05:52 AM

catdander
Posts:

Written by blue skies 8/14 @ 1:23 pm, "I am so glad I have dropped back in to GRACE and found Debra’s update.
Debra, I feel like we are on similar paths and I understand the emotions that pervade just about every minute. When I last tuned in, there was a discussion thread about whether people like us describe themselves as living with cancer or battling cancer, or other variations on that theme. It made me realize that I feel and act both ways. Mostly, I live successfully with cancer. But, from time to time, I am BATTLING my cancer…and I am in that mode again right now.
You may recall that I had successful chemo/radiation that appeared to eliminate the primary tumor and only really active cancer. But a second follow up scan to confirm that showed that my cancer had decided to “declare itself.” I now have several small mets in my pelvis, one in my cervical spine and one 1.7 cm met in my adrenal gland. When I expressed concern about treating the spinal mets so I could avoid waiting until I was trying to palliate excruciating pain, my doc ordered an MRI of the cervical met that caught 2 tiny mets on my brain. And another scan identified a third one higher up. As all of you know, this was devastating news for me.
My wonderful radiation oncologist said (kind of like the cancer “declaring itself” metaphor), think of these mets as the canaries that enabled us to catch this and take care of it early. My oncologist and Kaiser said the standard of care for patients with metastatic disease was whole brain radiation. But, having been an active reader of this website, I knew that cyberknife was also an option — and the preferred approach of my outstanding radiological team.
I feel great. Taking Tarceva and working with NIH to get comprehensive molecular profile testing completed (at least I have an adrenal met to biopsy), and identify clinical trials. There is one at NIH and Dr Spigel has identified a promising trial at his center that I hope to join..."

Reply # - December 8, 2012, 04:04 AM

certain spring
Posts: 762

Blue Skies. you appeared fleetingly yesterday on the Afatinib/Cetuximab thread, but disappeared ... Please come back and tell us, if you feel so inclined, how you are getting on.
I always think of you whenever there is cupboard-clearing in prospect! We are moving house so it is high time I did some of that, but without the dexamethasone to get me going I am proving very reluctant ...

Reply # - December 8, 2012, 09:51 AM

double trouble
Posts: 573

Blue Skies, I second that. I would love to hear how you are doing.
Debra

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