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Post-treatment Iovance TIL trial updates


LexieCat

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Hey, folks, rather than continue that EXTREMELY long thread about the trial, thought this was a good place to start a new one. I haven't been posting a whole lot because, frankly, I'm still feeling a bit like someone let all the air out of my tires. I've been home for about a month and still feeling fatigued, some loss of appetite, lightheadedness when standing/walking, and I'm a bit sick of it.

HOWEVER. This week I had my first post-treatment CT scans and saw the doc. The doc had warned me not to expect too much from the very first scan--that a good response could occur over time. 

But the doc and the rest of the research team are over the moon with my scan results. All the tumors are GREATLY reduced in size--looks like most by about one-third. All the lymph nodes are back to normal size. Areas of consolidation are thinning out. Spots on liver no longer visible. And the thing is, the way this treatment works, a successful result will show continued reduction in tumors over time. 

My birthday is next week, and the research nurses marched into the exam room singing, "Happy Birthday," with a brownie and a muffin with a candle stuck in it. The scan results  made for a pretty nice birthday present!

As far as my other symptoms go, the doc referred me to a pulmonologist just to rule out any issues there, ordered a lab test for Cortisol to check adrenal gland function, and also put in a prescription for a drug called Remeron, which is apparently an antidepressant but improves appetite and energy level. They tell me it takes some time to work, but I figure it's worth a try.

I'll tell ya--getting this good news already has me feeling better!

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They weren’t kidding when the team said this trial was swinging for the fences. In this case the bases were loaded!  That is great news!!!!  You might have to ask how your case will be designated for research publication so we can say “we knew you when”…..  awesome!!!

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Lexie,

Sorry I missed this yesterday.  I was thinking about you this morning and wondering when you'd get tested.  This is so super I can hardly stand it.  And, from all you say, this is just the beginning.  I can't wait to hear about your future tests.  Congratulations; although you are still fatigued and all I am thrilled with the test results and you deserved the Happy Birthday Tribute.

Lou

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Great results!   Hurray for you and TIL! And happy birthday. I hope the shrinkage continues. I hope your energy increases soon.

BTW, I thought of you the other day when I fell on my butt off a chair I was standing on. 

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Wow! You are an inspiration. Being new at this, I've often marveled at how brave you are in the face of this disease.  I'm so happy to hear about the positive scans!!! Hope you feel better soon too!

 

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23 hours ago, BridgetO said:

Great results!   Hurray for you and TIL! And happy birthday. I hope the shrinkage continues. I hope your energy increases soon.

BTW, I thought of you the other day when I fell on my butt off a chair I was standing on. 

I missed that. Normally when Lexi hurts herself I'm next. Going to be extra careful now..😂😁

Peace

Tom

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Great news, LexiCat! I've been thinking about you since you are usually a regular poster, and the last post I read from u was a bit gloomy.

Happy birthday and hope good news continues to rain down on you!

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My buddy Linda, who is also in the trial, went for her scans this week--unfortunately, she has pneumonia, which is obscuring everything. They put her on antibiotics, and we have our fingers crossed that she gets good news next month.

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Lexie,

Is that you???  Wow!  As Michelle said; "we have a star among us".  Now I want to see you famous for being one of the first true success stories in this trial.  

Lou

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Will do! She's another tough cookie. She got to hang out at the shore with her grandkids last week, so she's doing OK. They've got her on antibiotics and hopefully those will knock out the pneumonia.

Oh, and the other woman, Ellen, who is in the trial at MSK in NYC had her tumor harvest and is going into the hospital to start treatment next week. We're all staying connected so we can compare notes.

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On 8/5/2021 at 5:37 PM, LexieCat said:

Will do! She's another tough cookie. She got to hang out at the shore with her grandkids last week, so she's doing OK. They've got her on antibiotics and hopefully those will knock out the pneumonia.

Oh, and the other woman, Ellen, who is in the trial at MSK in NYC had her tumor harvest and is going into the hospital to start treatment next week. We're all staying connected so we can compare notes.

     Just read an update from "E"-- She is now settled into her room and starts day one tomorrow!  I HOPE she has the same positive results as you !   This is so inspiring to know three of you are all in the same tri

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Nice she got a day to settle in--I had no settling-in time, they checked me in and hooked me up!

And actually, today will be Day -5. They count the day you receive the TIL as Day 0.

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