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Moving forward with the Iovance TIL trial

LexieCat

By LexieCat
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Jesse L.

Jesse L.

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Good to hear you're doing fine...still pretty darn fast if you ask me, but hey, go with the flow! Now, just a matter of waiting again and not like that isn't something we've all had to do before. So glad it went fine for you. Oh, and by the way, I never want souvenirs of anything that comes out of me; I'd just rather have it all be automatic and work the way it should. I even make it a point to never watch when I get vaccinated, stick my port, or anything for that matter. It's just not my thing I guess...😆

Keep us informed as I'm sure you will...

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LexieCat

LexieCat

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Still feeling great. Because of my long nap yesterday afternoon I fell asleep after midnight and slept till almost 8 am--can't remember the last time I did that. Slept well--didn't need the wedge pillow because no cutting of my lung and no breathing/coughing issues. I took a couple of Tylenol before going to bed and that's the only thing I've taken since I got home. 

Got this email from my research nurse: 

  • Congrats on the tumor harvest!!!
  • Plan moving forward…
  • You will need to see either Dr. Shersher or Dr. Hong for physical, vital signs, weight.  We will also need to meet with you for quality of life questionnaires.
  • Over the next two weeks we will need to also complete the following- waiting on orders to be signed to schedule.
    • Scans
    • EKG
    • Labs- blood, urine and research
  • Admission for chemotherapy planned for 6/2 
  • TIL infusion on 6/7
  • Have an amazing weekend.

So that's the game plan. 

I texted my surgeon yesterday afternoon (I didn't get to see him before I left) to thank him and tell him how I was feeling (the hospital will call today to check on me). He texted back and said he was SO glad he didn't have to do the chest incision. He said he had a really "good feeling" about this trial and that I was going into it with the right kind of positive attitude. He promised again to come see me when I'm in the hospital. 

At one point yesterday there was a cluster of nurses in my pre-op cubicle and they were talking about patients and nurses who couldn't quite believe all the good things they'd heard about Dr. Shersher. I remembered right before my first visit with him in 2017 I met another patient of his in the waiting room, who was convinced Dr. S. had saved his life and told me how much I'd like him. Sometimes it isn't just hype--I struck gold getting him.

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Rower Michelle

Rower Michelle

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Ok. I am struck in total wonder you only needed Tylenol & got discharged the same day.  The whole congratulations on the tumor harvest sounds like something from a     70’s sci-fi movie!   The team’s excitement is shining through even in email.   Guessing that Dr Sheraher will be your follow up choice?   It’s a solid plan & now you have a little bit of breathing room until the admission.  I think pizza & ice cream are worth the indulgence! 

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LexieCat

LexieCat

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On 5/8/2021 at 10:32 AM, Rower Michelle said:

Guessing that Dr Sheraher will be your follow up choice?

Don't I wish! He's strictly a surgeon and not a medical oncologist (though of course he's rather knowledgeable about it). I remember asking him, after he did my lobectomy, whether I could continue to follow up with him. He said, "Well, you COULD, but the thing is, if you ever have a recurrence, it won't be a matter of more surgery, but rather chemo or some other drug therapy most likely. It's probably best if you do followup with the person who would be treating you in that case."

Which makes sense. Dr. Bauml has been great--I'll just have to find a new oncologist for followup. Probably someone at Penn--I just like their facilities/policies better.

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Jesse L.

Jesse L.

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It sounds like things are going excellent for you. Correct me if I'm wrong, but didn't you have all that testing already just to get to where you are now? And it's a bonus on top of all that that you get along so well with all the medical folks on the team you're dealing with. 

May everything continue so well going forward for you.  Who knows...if it all works out I might not be just too far behind you...😆

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Judy M2

Judy M2

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You do have a positive attitude and kudos to your surgeon for reinforcing it. Hoping for the best for you! 

Happy Mother's Day! 

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LexieCat

LexieCat

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10 minutes ago, Jesse L. said:

Correct me if I'm wrong, but didn't you have all that testing already just to get to where you are now?

Yup, but I'm sure the trial has specific protocols for the number and timing of procedures that have to be done to collect valid data. And I'm sure some of the testing is to ensure my health will continue to tolerate the treatment ahead. 

I'm just glad I won't have to have another stress test!

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Jesse L.

Jesse L.

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OK, I guess... Whatever it takes to get the job done! Then let's hope all those tests go well too; don't see any reason why they wouldn't. Hmmm...I've never had a stress test. Actually, with all the walking I do I would kind of look forward to a test such as that to see where I stand. I'm only a few miles from Lake Michigan and it's kind of cool here at low 50's, but sunny so I think I'll do five miles today. I'm on the good span after the second infusion and my next is on 5/17. I'm not looking forward to that...again. Oh well, got to do what I got to do... 

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LexieCat

LexieCat

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Yesterday I got a notification from EviCore, the notorious insurance review company, that they had disapproved my physician's (Dr. Hong's) request for a pelvic CT, on the grounds I'd had one too recently and it was unnecessary. So I shot a text message to Kristine (research nurse) to say hey, I got this, I assume if my insurance won't cover it, the study will?

She responded that that was weird, every procedure they'd submitted was approved. I asked whether this was maybe the "extra" pelvic CT they were talking about before I reminded them that I'd had one just before the progression was diagnosed, and that it, along with my chest CT, was on the disk I'd dropped off. She wasn't sure, but assured me everything would be covered. I told her I'd let her know about any other denials I get, just so we're all on the same page.

Nice to know that with a trial like this, I don't have to fight with the insurance company. 

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Rower Michelle

Rower Michelle

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I spoke to a reporter from Precision Oncology News yesterday, EviCore denied my biomarker testing, PET scan & initial chemo.  I believe their business model is right out of the movie Rainmaker.  They delay, defer & deny most procedures.  Hubby calls them Never-core.  My friend calls them Evil-Core.   @Lisa Haines would probably agree.   I’d give your HR department a heads up because you don’t want to be dealing with claims denials six months from now.   Normal insurance rules don’t seem to apply to Evil Core as they are a vendor hiding in the shadows.  

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LexieCat

LexieCat

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My healthcare (Horizon BC/BS) is through the State of NJ (my retirement from my career as a prosecutor). This is the first denial I've received since I started dealing with lung cancer in 2017. I guess that, up to now, everything has been pretty much according to standard of care. I'm still not sure who paid for my comprehensive biomarker testing. Insurance covered the most common mutations; I believe Penn may have done their own in-house testing (never received a denial for that) and the liquid biopsy would, I was told, be paid by the testing company if insurance denied it. 

Seems like you've had a tougher time of it, Michelle, in the insurance department than a lot of us. It's pretty awful to be forcing sick people to do battle with a company.

In a couple of months I'll be starting Medicare and our Medicare Advantage program is with Aetna. Aetna's had its own share of bad press, but I've found them relatively easy to deal with. I've probably had coverage with Aetna more, in the course of my adult life, than any other healthcare insurer.

LOL, "Evil Core" reminds me of "Mr. Robot"--Elliot always thought of E-Corp. as "Evil Corp." 

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Judy M2

Judy M2

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I've always said that insurance companies are evil. Ugh. 

Medicare is pretty good. I have a regular supplemental plan with AARP/United Healthcare and they've been pretty good too. (The NFL covers things like vision and dental for us.) The only time Medicare denied a PET scan was because the doctor's office miscoded it. Coding fixed and it was covered. 

By the way, one thing Medicare doesn't cover is the Shingrix shots, which makes no sense. You have to pay out of pocket for those. 

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LexieCat

LexieCat

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So I have an appt. this coming Wed. early morning for CT scans (and yay--I insisted that they try to access the port and got that approved). They are trying to schedule an appointment with Dr. Hong for vitals that same day, and then after I see him I can go get my labs (blood/urine) and EKG done. And I believe that's it for the procedures before my hospital admission (which is still scheduled for 6/2). 

I'm glad--it was kind of a pain running around for all the testing they did the first time--sounds like this round I can get all the preliminaries done the same day.

What also works out well is that ny next door neighbor is going in for hand surgery at Penn on Monday. I'm so happy I can partially repay the many rides he's given me to the hospital over the years. So I'll be taking him around 5 am on Monday and picking him up later in the morning. His partner doesn't drive, so I'm more than happy to help out with any errands, etc., until he's up to it. I've had some "issues" (to put it mildly) with this house since I bought it, but I struck gold in the neighbor department. And all things considered, I'd sooner have good neighbors and expensive repairs than a perfect house and awful neighbors. 

Interestingly, this is one time I won't experience much stress over the CT scan results. I already know I have new mets and it's been 50 days since my last cancer treatment, so not much to be shocked/ dismayed about. 

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LexieCat

LexieCat

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CT scans this morning, along with a bunch of lab work and visit with the doctor running the study. He says the CT scans look roughly the same as the ones I had in April, which seems to be good news--we know about the additional mets but at least it doesn't seem to be growing super fast. The "bad" news is that my hospital admission for the infusions is postponed for a week due to "logistics"--nothing medical. Of course, I'm more than anxious to get going on this, but the relatively unchanged CT scans make me feel a little better about it.

This morning was one aggravation after another. This hospital system is SO much less efficient than Penn and I was given at least a couple bits of misinformation about the scans. Worst thing was when I FINALLY got in to have my scan done, everyone gave me blank looks when I said the use of my port for the contrast had been authorized. NOBODY could find the order--which someone had specifically called to tell me had been approved. I was already tired and aggravated by that time, and they FINALLY called Dr. Shersher (my surgeon, who had authorized use of the port when I had my surgery but wasn't involved in this procedure). They got him while he was IN SURGERY (eek), but he authorized it for this one procedure.

The main reason I was insisting on it was that they couldn't use the port for the lab draws, so I knew I'd get at least one IV stick and didn't want to go through it twice. (And, of course, once I had the labs drawn, I again wound up with blood staining my sleeve.) 

There's more, but it gives you an idea how my morning went. I felt kinda bad--the older guy who was the radiology tech kept trying to cheer me up. Which actually annoyed me further, but I tried to be nice because he meant well.

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Sandy N

Sandy N

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Ugh!  Sorry to hear how your day went!  I know how hard it is to try to not take things out on people but they all need to understand the stress that we are under and we cannot be Mary Poppins all the time.  I hope the rest of the process goes smoothly for you!

 

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LexieCat

LexieCat

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Thanks, Sandy. I THINK this is all the testing I'll need before I go in--other than another COVID test right before admission. 

Oh, and the doctor running the study has now put a standing order in my chart authorizing use of the port for any future contrast procedures--and to be super-safe, he wrote me a script to carry with me that says the same thing. 

Which is something, anyway.

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Sandy N

Sandy N

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18 hours ago, LexieCat said:

Thanks, Sandy. I THINK this is all the testing I'll need before I go in--other than another COVID test right before admission. 

Oh, and the doctor running the study has now put a standing order in my chart authorizing use of the port for any future contrast procedures--and to be super-safe, he wrote me a script to carry with me that says the same thing. 

Which is something, anyway.

Awesome!  Hopefully this will make for some smoother sailing!

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