TimCT

I’m treated at the Smilow center at Yale New Haven, and I went through the TIL treatment there.

Hi Clare,

My white count rebounded pretty quickly. I got three injections of a medication (I can’t remember what its called) while I was still in patient specifically for that purpose. I was advised I might have some bone pain because they were hard at work making white blood cells. It was basically in the normal range before I left. So I think 5-6 days?

Red blood cells have taken a bit longer. My hemoglobin was just about back to normal on the 19th when I was in for a follow up.

I don’t really have a feel for if it’s working. Before I left the hospital, everything palpable felt smaller, though that might have been from the chemo or who knows what. Last Friday everything felt bigger and the tumor spots were pretty sore. My hope is that its inflammation from an immune response and everything is going according to plan and this isn’t progression already. The pain seems to stick around for a day and a half, and then it’s gone and moved on to another site.

Quality of life is a tricky one. I would say it’s mostly normal, though the surgery was serious and I’m still feeling effects from that. But I started working remotely a couple weeks ago which has been fine, and I’m back to doing normal things around the house like loading and unloading the dishwasher, though more physical activities will take more time.

I definitely hope others will find it helpful. An ordeal, yes. It was a hell of a thing. But if its effective, then its totally worth it. I keep coming back to the 80% disease control rate that came out of the latest data. I’m also covered in vitiligo, so maybe this will really kick my immune system into gear to start winning the war against disease. Time will tell.

Finally got out over the weekend! Hoping to put together a TIL write up soon. It was a hell of a thing, but I have a good feeling about it.

Still in patient. All 6 IL2 doses done! Now to recover. I’ve got some sort of rash. But other than that came through with flying colors. Tomorrow will be 14 days. I think. I’ve sorta lost track of the days.

Cells are in and I’m two IL2 treatments in. Oof.

The rigors are something else, but demarol knocks them back. Should be getting another treatment this evening, two tomorrow, then one on Sunday. Then that’s it and we wait for my numbers to rebound before I go home.

 

Trying, Ed! I’m torn between wanting to make sure I can pass on every scrap I can and not wanting to remember any of this for as long as I live!

Thanks guys!

 

Hey guys, sorry for the radio silence. Been a lot of ups and downs. Turns out, all was not lost on TILs. They didn’t come up with the target volume and therefore didn’t make their spec. But, it passed the potency test and we decided that this was still my best option. It took an extra two weeks of tests, the hospital IRB, but I finally got admitted Thursday.

Thursday and Friday were Cytoxan, and Saturday I started fludarabine. Cell day, day zero, is Thursday.

This definitely isn’t for the faint of heart. Ive needed a chest x ray and ct to rule out a clot, plus numerous preventative meds: anti fungal, anti viral, antibiotics, and I’m currently taking ibuprofen and oxi as well, due to everything bombarding my bladder and making it irritated and wanting to very painfully empty itself every 15 minutes.

Further updates as events warrant. But I’m in the thick of the TILs. Interesting to note, so is someone else down the hall, her cell day was yesterday.

So much for the positive signs. Iovance says the cells still aren’t growing like they want, and they don’t really expect them to at this point. So it sounds like TILs is off the table. I have an appointment Thursday morning to see Dr Sznol and determine next steps, if there are any.

Hey Guys,

I’ve been delayed a week. The TILs are still cooking. So now the admission date is July 1. More waiting…

Tim

Thanks guys!

The second of two drains came out this morning, as did the stitches that won’t dissolve on their own. So hopefully the pain will start to recede. Its okay during the day, but at night when all I want to do is sleep, it keeps me awake.

I’m getting my port put in on Wednesday, and my tentative admission date is Thursday. That is reliant on how the TILs are growing, and if they need more time. They’ll confirm with me on Tuesday or Wednesday that the TILs are ready, and then off we go!

Hi Guys,

Well, I made it through surgery. They tell me I was on the table for about 8 hours while they removed two big masses and shipped them off. Reportedly, they were 80% viable for expansion. So thats good news, and the first check box has been filled.

I spent the night in the hospital and was released Thursday morning. Recovering at home since. There is a lot of numbness on in my neck and shoulder because of how the nerve on that side was yanked and stretched during the debunking, but that should slowly fade. The pain hasn’t been terrible, maybe because of the numbness, and can be controlled with tylenol. I’ve got two drains still in, and their output has been steadily decreasing. So everything is going along as it should. I have some swelling around my throat which is unnerving, but I can still breathe and eat fine.

I have a follow up with the surgeon on Tuesday, when they should be removing at least one of the drains. I had CT scans this afternoon, and on Wednesday I had an appointment with Dr Kluger, who does a lot of work with TILs at Yale. Port install has been scheduled for the 23rd. Now if only my liver will hold out a few more weeks…

Thanks Jenn!

Sounds like a good plan for your situation. Cut it all out and get rid of it!

Thanks guys! Today is my last day for the Braftovi/Mektovi, so I’m hoping that while I’m not in a melanoma free fall, the side effects will dissipate somewhat and I can go into surgery feeling a little better. I’m already worried about not being able to eat after midnight and only clear liquids up to two hours before my arrival time.  That’ll be prime puking time if I don’t get something into my stomach.  Zofran, take me away!