Jump to content

Post-treatment Iovance TIL trial updates


Recommended Posts

I'm a bit late to the party since you already had your scan, but I am sending positive vibes for good scan results!

And I am so sorry to hear about your kitty.  Cat person or not, those little devils tend to bury into our souls and their loss is felt for a long time.  Hugs to you!

-Steff

Link to comment
Share on other sites

Lexi

I just saw this and am sitting her cheering you on and wish you great outcome from your scans.  I understand about losing a pet.  I'm shocked at how much it affects me when I lose a pet, but we all know that they do become family, so I do understand how you feel.  Anyway...I'll be waiting to hear and look forward to it being good news for you.  

Lou

Link to comment
Share on other sites

Welp, the good news is that the doctor doesn't see any sign of disease progression. But the cloudiness has only increased (he gave me antibiotics last time for suspected pneumonia), and the amount of pericardial fluid noted on prior scans has suddenly increased. He thinks what he's seeing in me mirrors what's been going on with Linda (who was there at the same time I was, today) and is guessing it might be some kind of autoimmune response to the treatment.

So the bad news is he's sticking me back in the hospital for a week or so. He's ordering an echocardiogram, having a cardiologist and/or surgeon draw off the pericardial fluid, and having a workup done by a rheumatologist. He did promise me they would use the port for any labs and told me I'd be in the same cancer pavilion as before (comparatively pleasant room). 

The hospital just called and said I could "come right over" and I told them I was told tomorrow. I just got home half an hour ago--sheesh. So they will call me tomorrow.

Link to comment
Share on other sites

Lexie,

I’m mining the good news of no progression first. It sucks with the potential autoimmune problem and sucks squared about your hospitalization. But these are far better problems than progression. 

Keep us posted on your hospital experience if you feel up to it. 

Stay the course. 

Tom

Link to comment
Share on other sites

Lexie,

Glad to hear about the "lack of progression" and not happy about the side effects.  You'll be in my thoughts and know that I'm pulling for you to overcome these symptoms quickly so you can get back home.

Lou

Link to comment
Share on other sites

12 hours ago, BridgetO said:

Can you think of the hospitalization as a vacation? How's the food there?

Last time I was in the food sucked--but now I'm wondering how much of that was the treatment. It took a while to regain my appetite after I got out, so maybe a lot of it was me. Still, hospitals are not known for great food. 

I'm also disappointed because I was supposed to go to NYC this Friday for world premiere of the Mayor Pete documentary, about his presidential campaign (which I was heavily involved in as a volunteer). Oh well, they will stream it the next day so at least I can watch it. Still, was looking forward to the outing and was driving up with a friend. 

Link to comment
Share on other sites

Hey, I’m really sorry you’re back in the big house again.  I do hope they get to the bottom of it.  I remember when you volunteered for Mayor Pete’s campaign and how passionate you are in supporting causes you believe in.  I get the disappointment can overshadow the good news.   
 

Given your celebrity trial status, you will have lots of eyes on you helping you to get better even with the sucky food.  Eat the ice cream first! 

Link to comment
Share on other sites

Finally home--this time it was for a week. I wound up having the pericardial effusion drained with a pericardial window procedure, which was immediately followed by a bronchoscopy to sample what Dr Shersher referred to as the "schmutz" in my lung. Yes, my friend and best surgeon in the universe, Dr. Shersher, operated on me for the FOURTH time (we keep saying we've gotta stop meeting like this). He did the pericardial window and Dr. Wissam, who has previously scoped me, did the bronchoscopy. 

They used my port for quite a few things but I still wound up with 2 or 3 IVs (which did NOT go well--two misses with me yelling before cardiologist used his ultrasound to go straight to the vein) and two arterial lines (even worse/deeper, which--after much protestation on my part--were finally done with the use of lidocaine AND an ultrasound). 

When I first got there I was sent to the "CDU" (Clinical Decision Unit), which is supposedly for ER patients not sick enough to be admitted, but not well enough to be discharged. These are tiny, closet-like rooms and when I said I'd been told I'd be on the cancer unit, they said I could be treated in their unit for up to a week! I told them that was unacceptable and if they couldn't get me a room on one of the pavilions, I was leaving. That got their attention to reach out to Dr. Hong's team, who came down and got busy finding me a decent room (wound up on the cardiac unit and had a GREAT view of Philly skyline from my 9th floor window)..

So the whole admissions process was sort of a Charlie Foxtrot, but once they got me up to P9, the cardiac unit, everything went a lot better. Apparently the biggest concern was my heart, but they determined that even with the effusion it was pumping strong, if a bit fast. After the fluid was drained (200 ml to start and then a bit more after), my heart appeared to be in great shape. EXCEPT I then developed low blood pressure and low O2 level, resulting in my being pumped with fluids--including a unit of whole blood--and put on supplemental O2 for the night. 

But eventually everything settled down and they sent me home today with the chest tube in place. I need to keep draining/measuring the fluid till I see Dr. S. next week (I'll see Dr. Hong week after). Both docs assured me they would call as soon as any pathology results come back. Both Dr. Hong and Dr. S. are fairly sure this will turn out to be an inflammatory response--fingers crossed!

Oh, and just because "special" things seem always to happen to me, the first two days I was there I had a possessed hospital bed. At least three times the bed randomly went up in the air--and I mean 5 feet off the ground! If I'd tried to get out of bed I'd have killed myself. The nurses said the same thing happened with the previous patient in that room but they assumed he was doing something to cause it--there IS a control to raise/lower the entire bed. But when it happened to me, too, they concluded it WAS the bed. They replaced it while I was taken (in the bed) for an echocardiogram. 

Anyway, glad to be home and hoping it will be a while before my next in-patient admission!

Here's the view from my window.  The tall clocktower building on the far right Is Camden City Hall--where I spent many, many days presenting grand jury cases over the course of my career. Philly skyline to the left. 

large.IMG_0020.jpeg.97a8474bda183eea413f15411e08c90f.jpeg

Link to comment
Share on other sites

OMG!!!  That post could become a novel, and a good one too!  You actually had me reading in anticipation of the next paragraph.  All digits crossed that the "smudge" is just inflammatory response.  But, Lord!  It sounds like you had missing veins, lack of skilled phlebotomists and a possessed bed.  Only you can have a cacophony of events like this.

I'm glad to hear that you're home, although having a chest tube stinks.  Now you can rest up and get a chance to recover from that week.  I do want to say one more thing though, the attorney in you is a good example for all of us here to advocate for ourselves regardless of circumstance.  I personally found myself cheering you on for that part of the adventure.

Continue to rest up and improve and all thoughts are going up for you in your recovery.

Lou

Link to comment
Share on other sites

BTW, for anyone wondering, a pericardial window is a surgical procedure that opens a small (1 or 2 cm) hole in the outer pericardial sac that surrounds the heart. They put in a tube to drain the fluid and when they remove the tube, any fluid just drains harmlessly into the chest cavity. 

 

Link to comment
Share on other sites

Geez, what next!  I disagree with Lou about the novel, only because it should be a memoir. Truth is stranger than fiction, especially in your case.

Hurray for you for yelling when the needle sticks hurt! And for demanding a reasonable room. 

Chest tube at home- I know that routine! What fun! Are you able to be up and around with the tube?  From my (former) chest tube to yours- best wishes for being done with soon. 

 

Link to comment
Share on other sites

Yeah, the tube is really no big deal. The incision is right at the base of my sternum, so the tube just kinda goes down behind the elastic waistband of my pants. There are a couple other, parallel, incisions right above that, which I assume was for other instruments. I'm having very little pain--just taking Tylenol for it. Hopefully the tube comes out Tuesday when I follow up with Dr. S.

I mostly just rested today. I didn't have much appetite but I just ordered a sandwich for dinner. 

Link to comment
Share on other sites

What an experience. Imagine if you weren't able to advocate for yourself so effectively. 

Your horrendous vein issue reminded me of when I was in the rehab facility last year after surgery. My veins weren't cooperating so they had to call someone from ER next door to get an IV in. I didn't have it anywhere near as bad as you. Yikes. 

You really could write a book about your clinical trial and tribulations, including your possessed hospital bed. 

Hope you can catch a break soon! 

Link to comment
Share on other sites

Wow. CDU sounds suspiciously like “there’s no room in the inn” or being unexpectedly wait-listed by an airline. People shouldn’t be parked in closets especially if they require hospital admission.   The geniuses who develop that concept really ought to spend a week in that room before implementing it.  It really burns me up because you shouldn’t have been placed in that position in the first place.  (End of diatribe). 
I’m glad you’re home and hope you lose the chest tube soon.  I’m sure you’re feeling better in your own bed.  
 

Maybe we should get a t-shirt for you that says something along the lines of “Don’t mess with me, my lungs are medically famous”.   At least you had a nice view.   
 

Let us know how you’re doing. 
 

Michelle

Link to comment
Share on other sites

Lexie,

I like Michelle's "Don't mess with me, my lungs are medically famous." Tis a great book title about your journey with lung cancer and treatment (hint...hint).

I recall being sent home with an installed tube. I also recall the shock of looking down at the shower tile and seeing it. It fell out! And that began another hospital saga, a story told elsewhere. I hope your tube doesn't interfere with sitting in a car with your seatbelt on.

Stay the course.

Tom

Link to comment
Share on other sites

There's a stitch in the tube to hold it in place. So it shouldn't fall out. There's also a clip behind the drainage bulb, so I can easily clip it to a T-shirt. 

I should be good till Tuesday, when I have my surgical followup. 

 

Link to comment
Share on other sites

Yesterday was rough, in terms of my coughing--I'd go for maybe an hour without coughing but then something would set it off and I felt like I was coughing my lungs out. Last night, though, things seem to have taken a turn for the better. I slept reasonably well (woke every couple of hours to change position but went back to sleep relatively quickly), and woke up with my breathing much easier and a lot less coughing. So far, today, I've felt like it's a big improvement. Also, looks like the amount of fluid draining is decreasing. I still have my spirometer and my  acapella device from my lobectomy--using those seems to help.

Fingers crossed this trend continues. It's hard for me to judge how the SoB is doing, what with the coughing. The surgery supposedly might relieve that, too.

 

Link to comment
Share on other sites

Lexie,

So glad to hear that your symptoms are beginning to abate.  I remember having pneumonia once and I used to get what I called "the endless cough" where that exhale didn't want to stop.  It's a terrible set of symptoms.  Also glad to hear that you got rest, you know how important that is to recovery.  Fingers crossed that this trend continues today and into the future.  Keep moving forward and yes the breath strengthening devices really do help.

Lou

Link to comment
Share on other sites

Dr. Hong (trial doc) called this afternoon with some bad news--the fluid around my heart had cancer cells in it. So the question is, where do we go from here.

He was on the phone for a while with Iovance folks--they couldn't commit to anything but were wondering whether I'd have any interest in being re-treated with the same TIL therapy treatment. He said the only reason they were considering it was that I had such a terrific response, initially, to the treatment. 

Apart from that, there were two trials at Penn I was considering when I decided on this one. One of those might be an option.

Needless to say, I'm feeling rather bummed out at the moment. 

Link to comment
Share on other sites

Lexie,

This is a real shock because, to date, your response to the trial was super.  I can only imagine how disappointed you must be.  Have they talked about any additional tests to see exactly what is going on, where the cells are from, etc.?  I have so many questions, but I understand that you do as well and you're also dealing with this news.  What are your thoughts on going through the TIL therapy again?  What other trials are you also finding of interest?

Know that until you are out of this and well you are in my thoughts and prayers.  

Lou

Link to comment
Share on other sites

Lexie,

I’m so sorry to hear about your setback!  That’s a lot to take in considering what you’ve been through.  Hopefully there are other trials that you can qualify for. 
 

I have a scan next week to see how I’m doing on my clinical trial.  Nervous to say the least. 
 

Sending thoughts your way and hoping you’ll get some good news soon!  
 

Take care,

Babs

Link to comment
Share on other sites

Lexie,

I'm sure "bummed out" doesn't come anywhere close to what you are feeling. Recurrence just plan sucks; yours after such a difficult treatment experience must suck squared!

There is some comfort knowing you are associated with leading edge lung cancer treatment experts. If it were me, I'd reach out to everyone on my team with their treatment ideas going forward. As always...

Stay the course.

Tom

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...