Moving forward with the Iovance TIL trial

[Judy M2]

FYI, I have my arms by my side for both PET and CT scans, and they strap you in.  It's comfortable but chilly, so I get a nice heated blanket. Just don't wear any metal, and wear a cloth face mask with no metal nose bridge. There is no "contrast" like in a CT scan, only the radioactive tracer in a glucose solution. It's actually pretty boring, especially sitting in the recliner for 45 minutes after the injection. Drink lots of water beforehand. And then treat yourself when it's over! 

[Jesse L.]

Oops...I feel like I've had so many scans that I get them mixed up. Judy M2 is correct in that it is a radioactive tracer (glucose solution) that is given to a person and you must wait 45 minutes in a recliner for that tracer to circulate throughout your body before you can get the PET scan. However, I do remember having to hold my arms over my head for the  whole time of about 45 minutes for the scan. I hope it is that you don't have to do this as it is very uncomfortable to say the least. Oh, and it is very cool in there, but they do provide you a blanket. No fidgeting now...must have clean scans!

[LexieCat]

15 hours ago, Jesse L. said:

If you haven't had a PET scan yet that would very much surprise me

I've had two PET CTs--one when I was first diagnosed (before my lobectomy) and one when I had my recurrence. I've asked about having one when I was going on maintenance and was told I'd have one only if there is progression. I was surprised when the doc didn't see the need after the recent progression. I think his point is that we can see where it's progressed--it won't tell us anything important we don't already know. 

Anyway, I know the drill and trust me, the fasting is the least of my concerns right now. In four years of dealing with this I'm pretty sure I've had just about every diagnostic test I could have--most of them multiple times. I think the only new one for me has been the echocardiogram (yesterday--reminded me of the ultrasound when you're pregnant, only longer). Oh, and I've never had the cardiac stress test, which I'm having in a couple of hours.

[LexieCat]

Whew! Survived the stress test. The nurses who ran it were super nice and assured me that if for some reason I couldn't do the treadmill, they would do whatever it took to get the approval to have a nuclear test (using medication instead of physical exercise) in time for my trial. As it was, though, I made it. They were nice enough to tell me I was "ALMOST there" and "Can you hang on 10 more seconds"--which really helped. Light at the end of the tunnel and all that. Even though I could barely talk when I got off the treadmill, my breathing was back to normal after just a few minutes sitting with a glass of water. It would have been a lot easier if I weren't so out of shape. 

[Jesse L.]

Whew...I was sure you had all the tests imaginable. And believe me the VA has given me about every test as well to include an EKG; haven't had the echocardiogram yet, but will probably get that in the near future too. Their motto must be, "We never give up; we'll keep poking till we find something wrong!" 

I'm glad you survived your tests; another few steps done towards your trial. My significant other just had the whole battery of heart tests somewhat such as what you went through and if she can survive that anyone can. She just changed health care providers due to a job change and after initially complaining of particular chest pains, they put her through the whole gamut of heart tests. The Dr.'s at the new provider were afraid she had an aortic aneurysm so she had an EKG, an echocardiogram, a nuclear imaging stress test, and to polish it off, a tresdmill stress test too. I did state above that if she could survive all that, then anyone can because she is not in very good physical shape. Oh, don't get me wrong, she is only 5' 5" tall and goes maybe 120 lbs. wet but she does nothing physical whatsoever if she can possibly avoid it. I try to get her to go walking with me but she never has yet and her idea of eating is to eat maybe only half the good food she puts on her plate. The rest she throws out in the ditch for the country critters and then she fills up with junk food on the couch the rest of the night as she watches TV and or reads a book. I try to talk some sense into changing her habits for the better but it's like talking to a wall; she is just going to plain do what she wants to do. Stubborn and health ignorance are a bad combination and can only lead to big problems down the road. And of course she won't listen to that either...

I hope the rest of your tests go well too and you eventually end up on trial (different context than you've ever heard that before I'm sure!). Stay in touch...  

[Jennedy]

@Jesse L. I hear you! My husband rarely puts anything healthy on his plate. He's diabetic, had his first heart attack at 38 y/o, spent his 50th birthday recovering from quadruple bypass, and has had 2 heart attacks since. We always thought he would be the first to go. Then along came NSCLC to show us a thing or two. 

@LexieCatI'm fairly certain I wouldn't pass those tests today. Maybe a few more weeks away from Carboplatin, and I'll feel differently. I'm cheering for you!

[LexieCat]

Cut it close, but got both of my tests done today. I showed up at radiology 10 minutes earlier than the 6:30 time they told me to be there for my PET CT--the appointment was for 7 am, the notice said be prepared to stay for two and a half hours--and my PFT was 25 minutes away and scheduled for 8:50 am. The research nurse said to ask them to expedite and if they claimed they couldn't, to give them her number. Fortunately, after some initial doubt, they were pretty sure they could have me done by 8:30 am--and they did! 

So then I tore over to the hospital for the PFT and that was relatively quick/easy. Last time I had one done (four years ago, pre-lobectomy) it was much longer and they had a gazillion exercises. This time, it was only two exercises, which they repeated a few times. At the end, they had me inhale albuterol and repeat the first test. I asked why, and the nurse said if you don't hit a certain number, we try this and see if it's any better. I said, was mine that low? She said she couldn't tell me anything but that my doctor would have it soon. Hard to say, it felt pretty much the same with and without the albuterol. But I really have no shortness of breath unless I'm exercising pretty strenuously.

So the only test left is the brain MRI scheduled for Monday. I hope I hear from my surgeon soon as to whether he thinks he can do this.

You'll probably never be asked this again, but keep your fingers crossed that I have a few cancerous lymph nodes--just enough so he can get a good sample.  

[Dallasdoug]

Good luck, LexiCat!

[Jesse L.]

Knocking those tests off one at a time...good show!! Hopefully your MRI goes well too, but that's a he** of a thing to wish for to have affected lymph nodes. I suppose though given the context then I dearly wish that for you as well. May your surgeon's words be what you want to here! 😆 

[LexieCat]

No news yet, re PET CT.

Just read the posted echocardiogram report--everything there normal.

There's a "result" posted for the stress test, but no actual info posted. Presumably it's normal-ish, since the echocardiogram was normal.

My surgeon may be busy today--I think he generally has surgeries on Fridays. So I might not hear anything till next week on whether this trial is a "go." I know he will call me at his first opportunity once he's had a chance to look at the scan.

Can you tell I'm antsy??

[Jesse L.]

No...can't tell in the slightest! And I'm a bad liar too! 

I hope it all goes your way!!!😆😆

[islandgirls]

@LexieCat I have not been on here for a few weeks, as I was fighting a big kidney stone... which I finally gave birth to on Friday... technically 5mm but it had a little spike on it that measured top to tip at 8mm. I named him Slate... lol

So I am happy to see you have made a decision on your trial options. I have been researching Car T studies and have briefly touched on your TIL therapy, so the timing of this is interesting.

Although it sounds a bit daunting, I feel like this may just be the boost you need to get rid of the nasty intruder in your body, once and for all! With your knowledge and your self-advocacy, you will do well. My and Boyfriend’s thoughts are with you... go get ‘em! 💜

[LexieCat]

Eww... I've never passed a kidney stone, but I hear it's a pretty unpleasant experience. Maybe you could make a piece of jewelry out of it. 

Thanks, hopefully I'll find out tomorrow whether this is a go or a no-go. 

[Judy M2]

OMG @islandgirls, kidney stones are awful! My husband used to get them all the time until he changed his diet to exclude oxalates (found in many "healthy" foods). Knock on wood, it's been 13 years since his last hospitalization for kidney stones. I hope you recover quickly. Drink that water! 

[Jesse L.]

I wish I could state that I know nothing about kidney stones, but unfortunately I do. It is however fortunate that I've only had one so far in my life, but that was enough for me to know I never want one again, not ever! By the time I got to the exam room at the walk in clinic, I could barely walk, talk, or even move much without pain. Nevertheless, while waiting for the Dr. in the exam room I became so ill that I violently lost my stomach (not trying to be graphic mind you) in that little sink in the room. After that I started to feel better and within two hours I was almost back to normal. Apparently whatever I did was so violent that it loosened the kidney stone and it passed. However, I spent two hours there after that just so they could make sure I was alright.

So, that's my story and I hope against hope to never be that ill again. That was terrible...😣😳😵

[TJM]

One of my scans mentioned a kidney stone. None of my team has remarked about it.

Guessing, as a Male, I will eventually experience that birth thing...

😎

[LexieCat]

Welp, unless this morning's brain MRI shows brain mets, we're a "go" for surgery on Friday. Surgeon called me while I was at physical therapy and was going over the PET-CT while we talked. He said there were plenty of lymph nodes he could relatively easily access for the tissue needed for the trial. That was the good news. I asked whether there were other spots of concern on the scan, and he said there were a few new lymph nodes, my lower right lobe (which is where the primary tumor is, so that was no surprise), the spot on my sacrum is still lighting up, as well as a couple of other spots on bone and one or two "suspicious" spots on my liver (that's a new one). So that was the not-so-good news. I haven't seen the report yet--I should be able to get a copy tomorrow.

I mentioned that if my brain MRI shows any mets, that would disqualify me for the trial. He said, "Only if they are untreated--if any show up, hopefully we could get you treated quickly and get you back into the trial." No idea how long that would take, though, so we'll cross that bridge when we come to it. 

I guess the results make me feel even more strongly that an aggressive approach is the way to go at this point.

[LexieCat]

Brain MRI is CLEAR!! Research nurse just texted me to let me know: "You have a brain and no cancer there!!?"

THAT is a relief!

 

[Jesse L.]

Wow...a brain with no "extras"!! There's your last positive sign it's going your way. And they're moving right along with the surgery on Friday already. All is positive excepting of course for the the few new spots that lit up, but then that's why you're there in the first place; complete elimination if I recall.

The best of luck (so far so good) that it all works out in the end. I'm pulling for you...!!😆😆

[Jesse L.]

TJM...if passing a kidney stone is what birth is like, I'm so unbelievably glad I'm a male. I hope to he** to never feel that lousy again. Compared to that chemotherapy is a breeze...!!!😃😄😅

[LexieCat]

24 minutes ago, Jesse L. said:

if passing a kidney stone is what birth is like, I'm so unbelievably glad I'm a male. 

If men had to give birth, humanity would have died out long ago.

[LexieCat]

Ugh (non-medical): I went for my Zometa infusion at Penn this afternoon and put a dent in my car backing out from a bad parking job. NOT what I needed at this moment. I think it's a small dent and hopefully can have it pulled out. It's a leased car or I wouldn't care, most likely.

 

[Lisa Haines]

7 hours ago, LexieCat said:

Brain MRI is CLEAR!! Research nurse just texted me to let me know: "You have a brain and no cancer there!!?"

THAT is a relief!

 

     Great News!!!!!!   

[BridgetO]

Great news on the brain! Bad news on the car. Wait, maybe it's good news that you're hurting inanimate objects instead of yourself.  😆

[Rower Michelle]

Yowza.  It’s only Monday & what a week you’re having!  What I’m thinking is your team has very good clinical instincts. They didn’t rush to cancel the surgery, explored the other options & kept the ship steady in light headwinds.   They are probably just as excited as you are about this clinical trial.  
 

As for the car, oh well, personally I think all this new technology is making cars more difficult to operate.... carry on!