Re-routing the GPS

[LexieCat]

So, with the lovely discovery of cancer cells in my pericardial fluid, I am having to re-route the GPS.

I had a virtual visit with my oncologist, Dr. Marmarelis, at Penn today to discuss next steps. Apparently, of the trials currently being run at Penn, there is only one for which I'm eligible: https://www.clinicaltrials.gov/ct2/show/NCT03329950--a Phase 1 trial of a CDX1140 (monoclonal antibody) alone or in combination with Keytruda, chemo, or another drug. My oncologist checked out the info on the PULSAR treatment Tom posted about here: https://forums.lungevity.org/topic/48886-the-next-big-thing-in-lung-cancer-radiation/ and agreed that it sounded interesting--her questions mirrored my own. Hopefully I can connect with Dr. Timmerman soon to see whether I could be treated with it. Finally, I have an appointment Wednesday with Dr. Hong, who was treating me on the TIL trial to discuss whether re-treatment with that would be appropriate. My two biggest hesitations about that are (1) how daunting it was to go through it the first time and (2) whether it makes sense to deplete my immune system of all these lovely TILs already infused, for the sake of re-infusing them again--I'm not sure what that would accomplish. One of Dr. Marmarelis's questions (which mirrored my own) is whether there's any way to check the level of TILs currently circulating.

So I think it will boil down to one of those three options: the CDX1140 trial, PULSAR therapy (maybe with immunotherapy added in), or re-treatment with the TIL therapy. Hopefully I will have narrowed things down in the next couple of weeks--I don't want to wait too long to resume treatment.

 

[LouT]

Lexie,

Thanks for the update.  My wish is that all three are available to you and then the only question would be which one would be the most efficacious.  Fingers and toes crossed for you on this.

Lou

[Judy M2]

Lots to consider. All best wishes. 🤞

[Rower Michelle]

Maybe you mentioned this earlier but did they do any biomarker testing on the fluid? I really admire your strength.  Keep us posted. 

[Robert A.]

Wishing you success whatever route you take.

 

[LexieCat]

9 hours ago, Rower Michelle said:

Maybe you mentioned this earlier but did they do any biomarker testing on the fluid?

Nobody seems to think it's important when it's been done once. If you've got any sources to show it's important to repeat, pass then along. I haven't found any.

[Tom Galli]

Lexie,

Let's hope you are a fit for PULSAR. I'm a radiation fan. Maybe it is the soldier in me but I like precision "sure kill methods", compared to a maybe we'll get it approach.

Stay the course.

Tom

[BridgetO]

I wish you all the best in making a hard choice!

[LexieCat]

Ugh--Dr. Hong (trial doc) had to cancel today's appointment--he's tied up in surgery. Appointment is re-scheduled for 11/17, which doesn't thrill me. Maybe I'll email him some of my questions--I'm trying to expedite the information-gathering so I can make a decision and get on with it--whatever "it" turns out to be. 

 

[Steff]

Well crap, I am sorry to hear this news LexieCat.  I hope you can get something figured out soon.  We were awaiting mom's initial lung cancer diagnosis over thanksgiving and it was hard to put aside our fears about the unknown and enjoy the day.  While there is never a good time to be in this position, I do hope that you can fight your way to an answer before the holidays.

Thinking of you-

Steff

[LexieCat]

Thanks, Steff,

Thanksgiving isn't that big a deal for me--I usually spend it alone and splurge on my favorite crab cakes for dinner--not exactly traditional.

I WAS hoping to get out to Colorado (where kiddos are) for Christmas this year, but not sure that's happening. Kiddos have said they'll make it a point to come here if I can't go there. 

You're right--there's NO time that's good to be in this position. I know you'll be missing your mom this holiday season. Sending a hug!

[LexieCat]

I texted Dr. Shersher, who was going to talk to Dr. Hong about maybe getting me in sooner. I also emailed him all my questions and told him I'd like to talk sooner than our scheduled appointment.

Just got a call from Dr. Hong's office, who said he had a cancellation and could get me in this afternoon. Whew--I have no idea which direction I'll wind up taking but I want to get all my info-gathering done so I can do that. Re-treatment seems like a long shot, but I'm keeping an open mind till we talk.

[LexieCat]

Really good conversation with Dr. Hong (who apologized for yesterday's cancellation). He has the same concerns I did about what good a re-treatment right now would do--to wipe out the TIL cells I still have and start from scratch. Apparently Iovance has had success with at least one patient who was re-treated, which is why they are willing to do it, but on the whole, it doesn't sound like a great idea. Most important, Dr. Hong is concerned that if I undergo another lymphodepletion, it would take my bone marrow longer to recover, and I could wind up with pneumonia that would kill me. He also agreed with me that I could very well have plenty of good TILs still circulating, which could be re-activated by goosing the immune system, with either immunotherapy or radiation. 

His suggestion was to go with the trial at Penn for now. His reasoning is that I could probably get radiation at any point but that getting it now might foreclose my participation in this or other trials. That makes sense to me--and it suggests questions for both my oncologist and the radiation oncologist at UTSW I'll be talking to next week.

He was very unhurried during our visit, which I appreciated. He asked me to keep in touch and assured me that if he heard of any research or trials of interest he'd pass them along. 

So I'm pretty sure I don't want to go the re-treatment route, but have to discuss with the other two docs next week before I decide between the other two options.

[LouT]

Lexie,

Thanks for the update.  It always feels good to be "moving forward" toward a solution.  I guess it makes sense that the trials won't accept you after radiation, but at least that remains an option if you need it later.  I'm also glad that you got into see your doctor without a long wait.  None of us are very good at waiting.  I look forward to your next update.

Lou

[Cordelia]

Lexie, 

glad you got good information. I’m hoping for good news. 
Cordelia

[Rower Michelle]

That makes sense to me too.  During a recent AlKtALK, Dr Ou recommended actually holding radiation therapy to allow for some of the newer treatments first.  The reason is radiation can cause pneumonitis post treatment and that is a common exclusion for enrollment into clinical trials.  
 

I’ve spent a few days looking for biomarker protocols for you.  Nothing published but a lot of docs on podcasts talking about frequent biomarker testing in their clinical practice.  So clinic protocols would be different than published research.  The reason for biomarker testing is to determine what is the resistance mechanism driving the cancer.  I guess I would be curious because of your clinical trial- if the TILs are still working than did something new pop up that would better assess what the next step is?   Is it worth a call to Go2Foundation?   

[LexieCat]

Met with Dr. Marmarelis (oncologist at Penn) today to go over the paperwork for the trial. It will be about four weeks before treatment starts--meantime there is a ton of testing. They did the EKG as long as I was there today. There will be two biopsies (unless they can find sufficient archived tissue)--one before treatment starts and another a few weeks in.

I asked how many patients they had in this trial there (this is a basket trial for people with all kinds of cancer). I forget the number, but I think it was 60-some. I asked how they were doing. The clinical nurse said most had had to drop out of the trial, due either to progression or to toxicity. He said they had one patient with a head/neck cancer, who successfully completed the trial and was on surveillance. 

So who knows--my hope is that this treatment might jump-start the TILs that I have floating around. And I've got PULSAR in reserve if I need it.

[LouT]

Lexie,

Thanks for the update.  Is there anyplace we can go to learn about this trial?  Wow, you sure have a lot more testing to go through, but it's understandable for a trial to want all possible data.  I look forward to your future updates.

Lou

[LexieCat]

1 hour ago, LouT said:

Is there anyplace we can go to learn about this trial? 

Here's a link to the trial: https://www.clinicaltrials.gov/ct2/show/NCT03329950

[Roz]

Hi Lexie,

It sounds like you are evaluating your options carefully. Making treatment decisions is never easy, especially when there isn't a definitive choice.

Eventually, you choose what you feel has the best chance. I hope the trial goes well for you if that's the route you choose. Keeping radiation in your back pocket in case the trial doesn't work for you,  sounds good. 

Best of luck moving forward. Sending tons of energy!

Best,

Ro

[Babs]

Hi Lexie,

Glad to hear you are moving forward.  Sounds interesting!  It’s always good to have other options.  
 

I had to take a short (hopefully) break from my trial due to toxicity.  Stomach issues and weight loss, fatigue.  Also turns out my vitamin D is waaay low!  Hoping to recoup and gain some strength back.  
 

Look forward to your updates.  Good thoughts,

Babs

[LouT]

Lexie,

Thanks for the information on the study.  I'm assuming that aside from the CDX-1140 your medical team will be involved in determining the second drug.  I've got all digits crossed that this goes well for you with positive results.  

Lou

[LexieCat]

1 hour ago, LouT said:

I'm assuming that aside from the CDX-1140 your medical team will be involved in determining the second drug.

I'm in the part that's getting Keytruda.

[Rower Michelle]

I’m this trial is there an opportunity to switch over at any point? 

[LexieCat]

I believe the parts all have different criteria. I fit the Part 3 group.