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Moving forward with the Iovance TIL trial


LexieCat

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A dent is a minor thing soon forgotten when we are celebrating your NED from a groundbreaking successful trial that blazes the path to a new effective treatment modality. 

God speed, good fortune, and stay the course councilor!

Tom

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8 hours ago, Rower Michelle said:

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.  

I agree. I know Dr. Hong (running the trial) and Kristine (head research nurse) are excited about it, and I think both Dr. Shersher (surgeon) and Dr. Bauml are rooting hard for this, too, now that it actually seems to be happening. I messaged Dr. B to let him know, yesterday, that barring a problematic brain MRI, we were a "go" for Friday and he messaged back that he was "glad" (in quotes) that there were enough lymph nodes to harvest. (I'd told him what I was hoping for and he agreed it was an odd position to be in--hoping for cancerous nodes--but he understood.) Then when I messaged him that the brain MRI was clear, he messaged back, "Hooray!"

I'm really gonna miss Dr. Bauml when he goes in July. But the more I think about it--and I'm again getting to compare overall care between the two institutions--I'm inclined to continue follow-up with Penn, regardless of how well this trial goes. I know I can switch at any time, but even little things like being able to have my port accessed for tests and blood draws--Cooper won't do it; Penn does it routinely. Yesterday, after I had the IV removed for the brain MRI, I had to run home to change before my  physical therapy appointment because I had a blood-soaked shirtsleeve. I NEVER bleed after IVs--I clot pretty fast. So they must have done a job on the vein. Plus if this trial doesn't work, or doesn't work as well as we hope, and the cancer stops responding, I'd rather already have a relationship with an oncologist at Penn.

Today I meet with my surgeon to go over all the consent forms and have my pre-surgical testing (getting stuck AGAIN). Apparently that's just "typing and screening"--hard to imagine they need to do it again when I had 15 vials of blood taken last week, but I think this is protocol for the hospital for every surgery.

Talked to the kiddos' dad yesterday, and texted both kiddos. I asked my daughter who she wanted me to list as the primary contact for the surgery. She has meetings going on that day, so she asked to have her dad be the primary contact. Which her dad and I are both fine with--I just didn't want to make her feel excluded. They (daughter and her dad) are both medical proxies. How many people would trust an ex-spouse with the power to "pull the plug" if necessary? I do, thankfully.

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Just had pre-surgical visit with my surgeon. He tells me that if his procedure goes the way he hopes, I can go home the SAME DAY. His plan is to do a mediastinoscopy and get all the lymph nodes in the mediastinum. If that doesn't give him enough tissue, he will do a VATS-type incision and get some of them from the sides. In that case, he expects I would go home the next day.

He says this should be MUCH easier on me than the lobectomy, because he won't be touching the lungs. 

He also told me that when I go in for the lymphocyte depletion and infusion, he and his team will make it a point to come see me in the hospital. He said it would be strictly social, since that part of it will be managed by Dr. Hong, but he knows it will be boring being in there for two weeks. 

Now, how cool is that? :) 

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Another reason to love Shersher and his team, plus they get a front row seat to the trial without having to wait for data to be published.  I'm thinking they can't wait to peek in the chart.....  a science nerd's dream..... onward....

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WOW!  Surgery and potential discharge the same day!  I'm amazed, but admit I am NOT at all familiar with any type of Lung Cancer Surgery as it was never an option for me.  Of course, I have read about Lobectomies and VATs  many times, but never really knew how it all worked and never ever would have imagined you'd potentially be able to go home the same day!  

Once you get done with this procedure how long will it take before you'll be able to move on to the next part and go into the hospital and start on that.  I'm really fascinated with this and thank you for sharing the full experience with us.

I also think it's wonderful that you have such a great relationship with your Ex, that is amazing that you are that trusting!   

Continued wishes for everything to go along well !  🤍  

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It sounds as if the dominoes have fallen into place for you fairly well with just a few dings, or should I say dent? And believe me, it is just amazing to me that you have that much trust in an ex. I've been happily divorced from my ex now for nearly 41 years and since she's a functioning alcoholic/drug addict, I wouldn't trust her for anything at all. The worst part of that whole thing is I have two fully grown daughters that live 16 and 20 miles from me and I have no relationship with them at all. Worse than that still is I have three grandsons and one granddaughter that I've never even met. Given their past pattern of cruelty/meanness I haven't even told them of my health problems. I wouldn't even like to think of what they would be wishing for me if they knew. At least I'm glad others have better family relationships than I do...   

Maybe I missed it somewhere, but how long does the trial take from start to finish for an individual such as yourself? And then too, how long before they would be able to recognize definitive results, one way or another? 

I'm sure you'll keep us informed and thanks for that. It is quite interesting...

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12 hours ago, Lisa Haines said:

WOW!  Surgery and potential discharge the same day!  I'm amazed, but admit I am NOT at all familiar with any type of Lung Cancer Surgery as it was never an option for me.  Of course, I have read about Lobectomies and VATs  many times, but never really knew how it all worked and never ever would have imagined you'd potentially be able to go home the same day!  

Once you get done with this procedure how long will it take before you'll be able to move on to the next part and go into the hospital and start on that. 

With a VATS lobectomy, you're generally in the hospital only 2-3 days--occasionally you can be released as soon as the next day. There are three tiny incisions on your side/back (I think the longest was a couple of centimeters), through which they pass the camera and instruments, and remove the lobe. I posted a video of the procedure and it's fascinating how they can remove half a lung that way. This procedure will be somewhat similar, but the incisions will be at the base of my neck and they will go for the nodes in the mediastinum. Since no lung is being disturbed, it's pretty simple. Doc even said he was going to ask for smaller breathing tube to minimize sore throat after the anesthesia. The procedure he's doing is not common as a "lung cancer surgery"--he is doing it strictly to collect tissue to use for the treatment.

Not sure exactly how long before I'm admitted for the treatment. It takes 21 days to process the cells, and since it takes a few days for the lymphodepletion, maybe I can go in sooner so I'm ready as soon as it's made. I'd guess it will be 2-3 weeks from the date of surgery.

 

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5 hours ago, Jesse L. said:

Maybe I missed it somewhere, but how long does the trial take from start to finish for an individual such as yourself? And then too, how long before they would be able to recognize definitive results, one way or another? 

As I said in my reply to Lisa, I think the treatment part will begin in another 2-3 weeks and will last somewhere between one and two weeks--till my immune system is back to normal. I forget what the scanning schedule is--every six weeks I seem to recall? Not sure when the first one will happen. I'll see if I can find out. Dr. Hong did tell me the one guy in the basket study who had a great response has had his tumors smaller every time they scan.

My ex and I have always gotten along. There are some people who are really nice people that you just don't "fit" with over the long term. I love his wife, too--I stay at their house when I go out to see the kiddos and she always makes me feel welcome. Needless to say, I make it a point to be the world's most considerate guest. LOL, we used to joke that the only thing we fought about during the divorce was the Nintendo--he wanted me to take it and I wanted him to take it (those MIDI tunes still haunt me). Once I was visiting and they brought me with them to a potluck. After my ex introduced his wife, I said, "And I'm Teri, the mother of his children." It was fun looking at the expressions.... :) 

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So, from your explanation I would venture that anywhere from three to five weeks for the therapy and then scans every six weeks thereafter to determine efficacy. That's not too long to wait I guess... I hope everything works splendidly for you. I know I've stated it before, but it bears repeating...the life you save may be mine!!

I find that just amazing the situation you have with your ex. You see one of the largest problems we have here in WI is alcoholism. I'm not just saying that; by all means look it up. Maybe it's the unusually long winters, maybe it's just a culture thing, or maybe a sports thing (Go Pack!), but alcoholism is rampant here. My ex father in law was an alcoholic (now deceased), my Dad is an alcoholic, and my ex is still a functioning alcoholic. My Dad's alcoholism was so bad that the courts took away his rights and remanded him to the permanent care of a nursing home in his late sixties. He lost everything to include his house, his second wife (my Stepmother, a really nice person), and his freedom. And now in his mid eighties his mind is nearly gone too; he just stares at the TV all day every day. My ex was no different in regards to irresponsible behavior due to her alcoholism; when we were married (late 70's) there were many times per week when she would just take off and party all night and then expect me to take care of the kids after I had worked all night (third shift) while she slept it off. What was most egregious to me was the fact that even though my wife at the time told me that my youngest daughter might not be mine, she actually had me thrown out of the house because she told the authorities I was threatening her. Well long story short, she got the elevator and I got the shaft. The courts in keeping with past precedent gave her everything to include my daughters; it was of no relevance that she was an alcoholic/drug addict because back then it was no big deal. However, it is a big deal now and most likely if the same thing occurred in the present she would never get the children. Am I bitter about it...I would have to say yes I am. I swore to never marry again and I've kept that promise; sure I have a significant other now and we live together, but she lives in my house at my discretion. I have made it well understood to her that if I want her gone, she will go and she is agreeable to that. And no, WI is not, repeat is not a common law marriage state. Believe me I checked that out every which way.

I figure it like this, if I could give up an incredibly addictive habit such as smoking, then any one of the a**holes in my life could have done the same with alcohol. Therefore, they chose not to and they deserve all the care from me that they gave me. In other words nearly none. 

Sorry for venting, but the end result of the above is I have nealy no relationship with either of my children or my grandchildren. And what makes it worst is they are well aware of what their Mother is; even knowing of their Mother's cheating. In one of the last letters I got from my oldest daughter, she told me that they had genetic testing done to determine if her Sister was her full real Sister. It was a positive which means she is absolutely my daughter.         

Oh well, more venting... I don't know if things will ever be right in my family, but I'm not about to go out of my way for people that apparently could care less about me; I don't care who they are. I wish it were different...

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@LexieCat i have a friend who has a good relationship with her ex as well. They celebrate all major holidays together her,, her ex, her significant other, all the kids (hers and SOs), same with grandkids. Sometimes, SOs ex will join them.

@Jesse L. I'm sorry you don't get to know your grandkids. They really are great!

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Unbelievable...that's all I can say...just astounding!

Just a quick story... My parents got divorced when I was 12 yrs. old and the breakup was not the least bit harmonious. The police were called on each other many times and cruelty ran amok, especially as it referred to the children (my brother, my sister,  and I). Back then my parents couldn't even be in the same room with each other without minimum threats of physical violence. And then it got worse... My older brother (by one year), who had chosen to live with my Dad (while my sister and I lived with my Mom), was involved in an accident at the age of 14 at the high school (different city than my sister and I lived). He slipped on the tiles by the pool, fell, and hit his head on a wood bench. Well, despite the somewhat small injury, he was in a coma for seven days, never woke up, and just died. You can imagine that funeral service; nothing could have been more bitter.

In any case, my parents stayed away from each other for many, many decades after that; even to the point of my Mom moving to the west coast. After my step dad died in 1995, my Mom moved back to our area (by my sister and I). So, just as a happenstance when my parents were both in the same Dr.'s waiting office when they were both age 80, do you think there might have been any issues? In fact my Dad didn't even recognize my Mom and my Mom barely recognized him. As it turns out they exchanged pleasantries, gave each other a hug, and went their separate ways. And they never saw nor will they ever see each other again...my Mom passed away two years ago.

Against all odds, a relationship that went out with a whisper...        

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So I go in for my surgery tomorrow--they want me at the hospital at 5 am. The woman who called gave me a raft of shi_ for my brief (fully-masked) trips to the (uncrowded) grocery and drug store today--she said she'd have to report it to my surgeon and let him make the call. Of course, they don't tell you about the quarantine requirement until after your COVID test--I told them then that there were a couple of places I'd have to go, but that I was fully vaccinated. They told me then, "Well, do your best," and now I get scolded like a kindergartener. There's no way my surgeon is canceling/postponing anything based on this, so I'm not worried, but I was a bit annoyed.

It's interesting how I feel about this surgery, compared to the lobectomy. Instead of sorta dreading it and going through with it reluctantly, because I had no choice, I feel this time like I'm taking a positive personal step toward eliminating this disease. From the way my surgeon described the procedure, I'm imagining I'll feel more or less like I did with the port implant, which wasn't bad at all.

I'll hit you all up when I'm fully conscious and coherent, lol--or at least what passes as coherent for me. 

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Wow, was that a surgery or did they just breeze by you with a scalpel and a hemostat...? I wish my surgery would have went so well..

 Let us know the scoop!!😆😆😆

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Just got home--my poor neighbor waited like 45 minutes after they said I'd be ready--they wouldn't let me leave till chest X-ray read, which took forever. Neighbor had to leave to take his partner for a medical appointment so I had to call another friend who lives like 15 minutes away. Fortunately, she could come get me.

I haven't talked to surgeon but my ex did and apparently all went great. The trial team was there, too, and the research nurse asked if I wanted a souvenir pic of the tissue they removed. Of course I said yes. :) 

Dr. Hong tells me that Iovance will keep them advised of how the tissue-growing is going, but it sounds like I'll probably be going in for treatment in a couple of weeks.

What's funny is that the nurse who was prepping me for the surgery asked why I was having this done, and I launched into my elevator speech explaining the trial and she cut me off: "Oh, the Iovance trial? I was in that unit before and worked with two of the patients--it is so cool that you're doing this!" Kristine, the research nurse, tells me I'll be a celebrity while I'm in the hospital--everyone will want to come see me. LOL, I'll have to work on my autograph signature.

All in all I'm feeling fine--especially now that I'm re-caffeinating. My throat is pretty sore, but that's it. I have one small incision at the base of my neck, which I have an ice collar on. So far that's not hurting a bit and they're recommending just ibuprofen or Tylenol, and if I need something stronger they'll call it in.

I had to beg to get them to use the port for blood draws and anesthesia, and the nurse made the necessary calls to get approval. Everyone was terrific (except for the very slow radiology department). 

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Holy cow, that was really fast!  You'll be like the fish living in an aquarium, everyone will be looking in on you in awe!  So glad and relieved you are feeling well!   Woo hoo!  

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Oh, BTW, I asked Dr. Hong whether this would affect the immunity I've acquired from illnesses or vaccines, requiring me to be re-vaccinated. He said no, the immune system would be greatly diminished, but not entirely wiped out. He said for something like a bone marrow transplant they actually DO completely wipe out the immune system and those patients do have to be vaccinated for everything. But this is less drastic and there will be enough immunity to fight those diseases/infections.

As I said, that wouldn't have been a deal-breaker for me, but nice to know I won't have to get all those vaccines.

 

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