TIL Clinical Trial: Day +14: Quick... - Melanoma Caregivers

Melanoma Caregivers

TIL Clinical Trial: Day +14

Quick update while my darling is sleeping, which you know is a rarity in a hospital.

Today is Day +14 since the TIL infusion (that's how they count. Zero day is transplant day.) I'm including a photo of the giant, heavy, metal casing for the nitrogen frozen cells that came 100mg/bag in 4 bag doses. One of our friends said it looks like a giant rice cooker.

Wayne was able to receive 5 of the 6 planned IL-2 infusions following the successful TIL transplant. The IL-2 was rough: within 30 minutes of each infusion completing he went into full on rigors, rocking the bed with very violent full body shakes. They tried Demerol push at 12.5 mg each in a range of every 15 to every 5 minutes, and for the last round tried alternating with morphine, but this would go on for about 45 minutes and then start to diminish. Apparently he is "exquisitely sensitive" to the IL2 (read: overachiever in reacting) even though it is usually 2 hours post infusion when folks get this common reaction, and usually by the 3rd infusion is it significantly diminished. Not for my dear heart.

Round 4 at midnight was the worst experience, probably because the nurses were holding the Demerol for 15 minute increments... Round 5 was met with significant skepticism, but our doc had a discussion with that set of nurses explaining that the meds could be given as soon as in 5 minute increments. We wound up with no 6th infusion 8 hours later because he was not producing enough urine. And he was exhausted (me, too) and the doc thinks because of how reactive he was to the meds he probably got enough. IL-2 is dosed by weight so he got a lot because he's a tall, big handsome fella. Well, handsome is not a dosing criteria, but I thought I should throw that in there.

Silly us, we thought the next days afterward would be like recovery from the flu: dramatic improvement each day and fairly quick. Nope. Side effects are: no appetite, some low nausea, very unhappy GI symptoms which have now developed into C-Diff from all the antibiotics coupled with no immune system, lots of sudden needs to urinate due to lasix to reduce the 32.5 pounds he has gained over the 3 days in fluid weight from the capillary leakage from the IL-2. Everywhere from waist to toes is swollen tight as a tic. Lots and lots of blood draws at 10 tubes each for the study, plus more blood draws for daily labs (twice a day) and cultures to see if infection is growing. Fortunately the C-Diff was gotten under control (weird fact: antibiotics + reduced immune system cause C-Diff but a different antibiotic is the cure…).

On the day our daughter had commencement from Virginia Tech Wayne was released home after 18 days in the hospital. We were able to watch the rainy proceedings via YouTube from the back deck of our friend’s house where I have been staying while Wayne was in hospital. It was a bittersweet viewing. Saturday all the children came to visit for lunch and birthday cake to mark Julia’s graduation and Wayne’s 60th birthday, then we packed the cat and drive home to sleep in our own bed.

Today we travel back 100 miles to see the study doc for labs and check-up. First scans will be June 17. We can see several cutaneous areas that have shifted in appearance: some areas have flattened, others are red/inflamed and darkening. We hope this is the result of the TIL cells going all Chuck Norris on the melanoma. Wayne continues to be pretty tired, but yesterday for the first time he read some pages in a book (he’s a daily and voracious reader at baseline, and hadn’t touched reading material since admission) and listened to music again (also very abnormal as music is constantly being produced and heard in our house). He still walks very slowly, can’t bend to get shoes on easily, and has super fat feet and ankles. And no hair. He had me shave his head about 10 days ago when the fallout started from the first chemotherapy. So for the first time he looks like someone living with cancer.

As for me, I think of this community often with gratitude, and at all sorts of odd hours of the day and night. I’m also tired. I have continued to work at weird hours and around Wayne this month, having used about 24 hours of PTO over 3 weeks. My friends who housed me literally met me at the door with food in one hand and a glass of wine in the other each late night I came home (I stayed over several nights, but it was not sustainable to “not sleep” in a recliner). I don’t think there was a single day when I was at the hospital under 12 hours. Our cat, Miss Scarlett, greeted me at each homecoming and snuggled with me whenever I slept. I feel like I’ve been in constant motion, which is hard to come down from. Being present in the moment has been all I’ve been capable of so far, which may be good at keeping 90% of my anxiety at bay while we wait to see if this treatment has an impact on the melanoma.

Peace,

Missy

11 Replies
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God Bless you Missy and Wayne . You are doing everything humanly possible to eradicate every melanoma cell from Wayne’s body . It will work ! Hugs to you .

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Thank you.

Missy

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You are so strong. Both of you. Many prayers and so much love going your way! I hope you are able to get some decent rest as well.

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We are in a very slowed down space and getting regular sleep again since we are back home. Except now when I’m clearly awake at 1:30 am 😉

Missy

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Missy, wow it certainly sounds like Wayne is really going through an awful lot. I can only imagine how tired he is. God Bless him. I also can understand your feelings of only being present in the moment, and it is definitely a godsend. You are both so strong. Blessings to you both.

Michele

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Thank you Michele. There are also times we are not strong and cry, which is also ok

Missy

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Prayers are with you and your family. So glad you are going home to your bed! :)

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Been thinking about you guys! Glad there are some noticeable changes. And also hope the TIL are going all Chuck Norris 😋 praying he gets better and better everyday. ❤️

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Thank you for this update, I have been thinking so much about you these last weeks. Very glad you are back home after this rollercoaster. Sending much love and positive thoughts your way, hoping the TIL are doing their thing!!! <3

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I am so sorry you are going through this, it sounds exhausting for both of you. Sending lots of love and prayers your way. Keep up your amazing attitude ❤️

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Wow wow wow! Those side effects sound incredibly awful! What brave souls you both are. Hoping for good outcomes after all that. Also hoping that this research brings them one step closer to curing this disease, for everyone:)

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