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Moving forward with the Iovance TIL trial


LexieCat

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I spoke with Lexie on the phone this morning. She called to tell me she is feeling "1000%" better now. That said, she still has challenges with excess fluid and low WBC and reports a UTI and pneumonia as ongoing problems. She's receiving medication to address those symptoms.

We spoke of her losing all her hair and of the importance of a port for those in cancer treatment or extended hospitalization. Her persistence in changing medical hearts and minds to draw blood through the port rather than a vein has hospital staff rethinking the use of a port. Some are coming around.

She reports a healthy appetite but the food quality is just horrible. Typical of many hospitals, catering is "contracted out" and meal quality suffers. She had a discussion with the dietician but doubts that will change the quality problem.

Her surgeon who performed a lobectomy years ago is stoping to chat and lift her spirits. Her doctors are encouraged about her recovery. She told me that several had to drop out of the study because it is a "slug". But, she intends to stay the course.

Tom

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Great Update!

  Happy to hear that you are 1000% better depsite some ongoing issues that they seem to be addressing and treating.  Hoping these too will quickly pass and she'll soon be on the road to recovery.   I have been following the updates on her Caring Bridge and it's great to know she continues to improve each day.  She's one brave lady and this is truly such an inspiration to us all.   Hoping each and every day will get better and better and that this will be a huge success.

Sorry that you are NOT loving the food, but hopefully soon you'll be home and/or can have some Yummy food brought in!    As for hair loss, that's a hard one for some of us, but thankfully it does grow back and there are now lots of stylish wigs and hair coverings you can use in the interim.

I can not agree more about how much easier it is to have a Port when dealing with cancer treatments and lots of blood draws and tests.  I  have now had mine for over six years and it's been such a blessing and has never given me any issues.  I highly recommend a port for anyone who is having treatment by infusion.   So happy to know you have a port, they truly are amazing gadget ! 

Best wishes to you 🌺

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Lexie....even the meat loaf sucks? I call foul. Tell me the lime jello is still a classic?

Peace

Tom

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Thanks for the update.  Lexie is a brave lady and I'm amazed how bravely she is facing all of the side-effects you mentioned Tom.  
Keep going Lexie, we love you and miss you here on the forum.

Lou

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So probably will have to fill in details later, but didn’t want to get too much further behind. Yesterday it was 2 weeks since I went in, but feels like forever. Happy to be out of ICU, as noted, but frustrated with how long it’s taking for blood counts to get back to normal. So far I’ve had 2 units of whole blood and 4, I think, of platelets. And more antibiotics than you can shake a stick at. I’m thrilled when I’m cut loose from the pump for an hour or two.

I’m told this just takes time. They beat the hell out of my immune system and it takes time to come back. No one seems concerned this is/will be an intractable problem. 

Nice perk: there’s another woman here, Linda, on the exact same trial only a week behind me. We met just before she went up to ICU. So far she’s doing OK, though she’s starting to say it’s “ruff.” Her daughter comes every day and wanted to know if there were anything she could bring me. I told her a soft cap to cover my newly-naked head. They found me a cotton scrub cap but it’s not good to sleep in because of the knot in the back of the neck. AND she brings her mom fast food every day. So yesterday I got a bag of 4 beautiful soft knitted caps. And a BK double cheeseburger with a Diet Coke. Anyway, nice to feel like I have a friend nearby.

As I said, I’ll try to get back and post more detail later, just wanted to get something down before I turn to my 600 unread emails (mostly spam, obviously).

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Patience Lexie. I know..easy for me.

I cannot remember how long it took for my sons marrow to start showing signs of life..seemed like forever.

A bit surprised your out of ICU if your counts are still low. 

Peace

Tom

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Lexie

It's so good to hear from you again.  And a good burger is always a joy, especially in the midst of all you've been through.  It's also nice that you met an "outside connection"...so you can get some treats when needed.
Stay strong and know we are all pulling for you.

Lou

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Encouraging labs this morning—platelets, RBC, WBC, and neutrophils all up. Still have a ways to go and we have to keep the trend positive but at least no transfusions for today.

Water on ankles/feet down—close to normal. One more dose of Lasix. 

My buddy Linda texted me at 5-something am asking me to call her—she got moved and “You should see my new crib!” I called and it turned out last night was a heavy trauma night (we’ve been in the Trauma ICU) so they needed her room (so far, she’s had an easier time than I have). They moved her to the “penthouse suite”—expansive view of Phila skyline out one side and of Camden out the other; huge and roomy. I told her to invite me when she throws a party up there. Her daughter is bringing me more goodies today.

So yeah, I wanna get cut loose but things headed in right direction.

Thanks for all the continued good thoughts/support!

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I'm glad to hear from you. It sounds like you're your usual feisty self. Too bad you didn't get the penthouse suite. I was going to say "hang in there", but I know you will and you don't need my advice. 

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That's a great update.  Glad to hear that all the right things are increasing.  Enjoy those goodies.

Lou

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Great to hear your update and again hoping that each and every day improves.

I was talking to another LUNGevity member today and she is in the process of looking into two new Clinical Trials, and once she started to describe one I realized it sounded much like this trial and I told her that I knew you were doing this and turns out is the same trial.  She often joins our Zoom Calls mostly on the day calls, so I do not think you've ever met or seen one another. 

Her name is Ellen and she lives in NY.    She has Stage IV NSCLC and is KRAS+, but has not had much success with any of her treatments.  To date she's had over 100 doses of chemo and nothing has helped, so she is very interested in this trial and would LOVE to talk to you when you are feeling better.  She is on Facebook and I gave her a link to the forums and told her you were sharing your journal here and on Caring Bridge.

Hopefully, once you are up to you too can connect.   Feel free to message more for more info and I'll get her email address and any other contact information you may want to share.

It would be wonderful for you both to compare notes and she does sound like she is ready to move forward and start this process of getting into this trial in NY.

 

   Lisa

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Teri

  I am going to send you a Private Message with Ellen's contact information.  Ironically, she rec'd a call from her doctors today and the trial is filling up fast, so she set up an appointment to go on July 1st and if it all goes well here surgery will be on July 13th!  I wish you both the very best.  

   Lisa

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I’d be glad to talk to her, Lisa. I’ll probably be more encouraging once I get the heck out of here. 

Linda is still living it up in the Penthouse. Her daughter tells me she’s on her LAST IL-2 infusion, so she’s already got me beat there. Not a competition though and I’m so happy for her it’s been easier on her than it was me. Hopefully her immune system comes back soon, too.

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Teri,

 Thanks so much!    Hoping you all have amazing results on the trial and can all keep in touch and share experiences with each other!   💜

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Lexie

Someday you need to detail your struggles for us late comers. Sounds like your doing well but it also sounds like it's a bit harder than you expected?

Your a cutting edge chick and this is cutting edge treatment. Dont hold it against your new friend that she required more treatments than you did.

Peace

Tom

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No, Tom, that wasn’t it—I was SUPPOSED to have six but they stopped at five because of my breathing difficulties. They were afraid if I did one more round they’d have to intubate me—which, obviously, none of us wanted. But Linda more or less breezed through it, compared to me. I’m plain happy for her.

Hopefully her numbers come up more quickly than mine, too.

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Some good news from today’s labs—my WBC has almost doubled from yesterday. The RBC and platelets had dipped a bit, but not enough to require more transfusions. Saw the on-duty oncologist and he thought I was looking good. Feet/ankles basically normal, no breathing problems. So hoping I can stay on this track.

Sounds like Linda will be in her palatial digs till Monday at least. I told her no faking just so she can stay up there!

Linda’s daughter brought me Taco Bell yesterday and I have leftovers for today. They fixed her what is essentially a taco-kit—with four shells, and the meat, lettuce, and cheese in separate containers so the meat can be zapped at will and the tacos won’t get soggy. Brilliant! She also picked up a six-pack of small Diet Coke cans to keep in the fridge here.

So I’m in good shape overall, just a waiting game for immune system to finish catching up with me.

@Lisa Haines, I talked to Ellen last night and we had a good conversation. She’s also sending me info on the CAR-T trial she’s lining up at the same time. I figure it might be a potential backup if this one doesn’t work (though I have a feeling it will).

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Great news this morning! Labs have me at normal WBC and RBC, neutrophils way above where they need to be. Platelets went down a bit but no transfusion needed. The doc says she can’t guarantee anything (she’s not the primary for this study), but she thinks I MIGHT get cut loose in the next day or two.

Keep your fingers crossed, folks! 

And incidentally, after two straight days of Taco Bell, I can’t say it didn’t put my immune system over the top. :) 

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I’m on the verge of getting cut loose. Doc wants platelets a bit higher, but as of now, WBC is 4.93 (needs to be 1 to go home), Hemoglobin 8.5, Platelets 18. He thinks I should be able to go home tomorrow or next day at latest. 

Friend Linda coming down from ICU today. Her daughter is bringing us both wonton soup. (Yesterday she brought me Popeyes). Linda had a bit of delayed reaction to IL-2, but after a couple of rough nights is doing great. 

EVERYTHING is more bearable when there’s light at the end of the tunnel!

ETA: More good news—they are discontinuing all my antibiotic infusions, so as of now I’m FREE of the pump.

 

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Lexie,

What a rock star!!!  Tacos, platelets and WBC....all at once.  No more pump, just flying along here.  Can't wait to hear that you're out and feeling good.  

Lou

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