Traveling through TILs with Tennille

Paula "Tennille" Creekmore Obituary 2023 - Smith Funeral and Cremation Service View Paula "Tennille" Creekmore's obituary, send flowers and find service dates or sign the guestbook.

Hey everone it’s Richard Tennille’s husband. Yesterday evening I did the hardest thing in my life. I had to say goodbye to the love of my life. My sole mate. My person. Tennille fought as hard as she could until it was time to be with the lord. You guys know she was one of a kind. The greatest person I have ever known. When I tell you she fought, she fought. She fought more than anyone could, so strong. How do we go on with such a wonderful person gone. Thank you all for being her friend and loving her. Please take a minute to set and think about Tennille and what she meant to everyone.

This is Lindsey, momma for those of you that don’t know has had complications with keeping her o2 stat up. We are back at UT and they are running test to see why fluid keeps building in her lungs. They are working hard to figure it out. Tennille is doing well just scared. I’ll update more will we figure this thing out.

Again thank you all so much, just keep praying please.

Hey all, it’s been a while, I apologize. I wish I could explain how sick I’ve actually been, things have been pretty rough. and I’m not near the top of my game yet.
They figure that all this is from TILs, a slow overwhelming inflammatory process over my entire body. They told us that I was going to die. Thank God my oncologist came in and figured things out in time to get the right meds started.
I am so swollen from steroids and other meds that I do well to hobble through the house. BUT I’m not in the hospital and that is a huge answered prayer.

My question for you all. I am having to receive blood about once per week until my marrow can catch up. As everyone knows that gets expensive. Are there those willing to donate in my name? Would it be easier to set up a blood drive to keep things in one date/spot?
I appreciate the love and support from everyone. Give me opinions below if you don’t mind.
Love T

Today, after 38 days of inpatient (2x) and a 7 day rehab stay, I am going home.

I want to first apologize for not responding to texts, messages or snaps, honestly I’ve just been too sick. I haven’t picked up my phone hardly at all, I was too exhausted.

My first stay was for 3 weeks for chemo induction for TILs. Everyone knows how that turned out; water weight gain of 24 pounds, kidney failure and inability to eat.
The day that I was sent home I knew something wasn’t right, I couldn’t put my finger on what it was but I knew. I even cried while they were giving me discharge papers. I knew.
When I got home I had no reserves, nothing to keep me going. I was breathing fast but couldn’t catch my breath. My Apple Watch did show sats in the 80’s, respirations in the 40’s and I didn’t feel good at all. So Richard took me back to the hospital that night. I was really sick. I stayed 24 hours in the ER at UofL waiting on a bed, I never recommend that - that place is off the chain!
The prompt diagnosis included kidney failure, large Pulmonary Embolism and some heart strain - ALL RELATED TO TILs!! So that stay was from November 28 through December 12. My heparin drip was turned into eliquis after a week or so and they got my kidney failure under some control. I still wasn’t able to eat. I was oxygen dependent.

On December 12 I was admitted to this rehab facility. I’ll just say this - never again.

That’s my short story. I’m sorry to keep you all waiting, I really have been to sick to do anything.
Thank you all for your love and support, especially Richard and my mom who didn’t let me stay one night alone.

This is Lindsey typing for my mom.

Her counts met criteria yesterday so she was discharged home. It was a hard ride home as she is still very ill. Please no visitors at this time. Thank you all for all the prayers.🖤

They give me a sleeping pill here at the hospital, they say most BMT patients receive one. All that does is make me sleep early and wake earlier 😂.
I am quite pleased this morning as my nurse drew my labs at 0400 and just came in to talk about my counts. My WBC is 0.3!! This is HUGE! Hopefully this is my body trying to get back to normal. I’ve been at zero since chemo!
My kidney function (creatinine) is slowly going down, it is 2.19 this morning. My platelets are still a bit low at 21k but they are coming up on their own, I’ve been running around 4k for platelets.
I am so excited about my labs!🥳🥳🥳 All I am waiting for to be able to go home is my labs to normalize. I’ve been in here, in this room, for 2 weeks and 1 day today. That’s tough BUT I have had the best nurses and techs one could possibly have take care of me. The staff on this unit, they want to be here. That makes a huge difference in attitude and conduct🖤

As for the rest of me, I am up 22 pounds from admission day. That’s pretty miserable, FYI. It all has to do with my kidney injury, being unable to give me lasix, and the fact that they keep BMT patients “wet”. My renal doctor told me yesterday that they prefer to keep chemo patients “wet” vs “dry” when it comes to weight. All I know is that I am swollen in places that shouldn’t be swollen 🫠 and I am bruised from head to toe (from no platelets). So this is just a jolly good time! 🫣

I want to thank each of you for all of the support during all this. Honestly I don’t remember much about the last 2 weeks because I was so sick, but you do. And you prayed for me. There is no better friend than one who prays for another, I simply cannot thank each of you enough.

Deuteronomy 31:8

2am musings that come from being ”locked” up.

On this last Sunday Richard and I agreed that I would be fine so he would leave for home that day and work Monday through Wednesday and drive back up on Wednesday afternoon and be up here for the Thanksgiving holiday. Great plan 🫠

On Sunday afternoon, after he left, I got a nosebleed. Not a big deal, right? Absolutely a big deal. I was up all night Sunday night because it wouldn’t stop, my nose poured then some areas in my mouth started bruising as well as my lips. Geez. My lips were so cracked they just bled all the time. I was miserable on Monday. I’m not sure how many packs of platelets I got on Monday but it was a few. Tuesday comes and I have to have PRBCs because my nose has bled so much and more platelets. My nose bled all Tuesday night. There was no sleep! I was so tired that I didn’t answer my phone and was simply unable to send a text message. That tired. Sorry to all that keep texting me daily with no response, I’m trying. My nurse didn’t let anyone come in my room on Tuesday, I needed rest so bad, glad she could see that.
Wednesday was not such a bad day. My nose bleeding slacked off quite a bit and I was able to walk in the halls. And Richard came back Wednesday afternoon! 😍
Thanksgiving day (yesterday) was a nice, quiet day, totally opposite of what I’m used to on this my favorite holiday. I missed my family so much. Thanksgiving dinner was catered for the staff, each patient and a family member. Very nicely done. I went ahead and shaved my head yesterday afternoon. My hair was falling out and it was everywhere! That’s gross, so Richard shaved it for me. I was a little upset but, I knew coming in that I would lose my hair so, don’t mess with my hat. You try to take off my hat and you will bring back a nub. Deal? Deal. 🥷🏼
Today we are back to the same old grind. Richard is still here, I’m currently getting some platelets, gotta take some mag and phosphorus 🤢in a few minutes. My creatinine is 2.2 this morning, a little lower than yesterday!! 🥳
We are celebrating every step we can and praising Jesus that I have done well thus far. Specific prayer requests; that my body starts making platelets, that my kidney numbers continue to go down and that my WBC will come up. Right now I have zero defense against anything.
Thank you all for following and praying.
Love T🖤

I am thankful for each of you. 🖤

I have been pondering on how to adequately describe to you the arid way they keep this floor, it has so far escaped me. this unit is dryer than any desert 🏜️ I have ever been to. My nose bleeds all the time (they are getting a nose spray for that), my lips stay soooo chapped. I am grateful for chap stick! The inside of my mouth can most accurately be described by that scene in “Me, Myself & Irene” where Jim Carrey
has cotton mouth so bad! That’s me!

Anyway, on with it; yesterday I was telling my nurse about my mouth dryness and she told Richard to pick up some lemon drops for me. So, being the awesome husband that he is that is exactly what he did. I like lemons, love lemon in my water so…I popped one in my mouth. Instant saliva, I had found heaven! It was glorious!! For a few minutes. I was unaware that the middle of the lemon drop tasted sickly sweet. There that went along with the 3 bites of grilled cheese I had managed to eat yesterday🤮. After that I was mainly rolling in a ball on my bed gagging yesterday.

Today, im hanging out in my chair. I have been repeatedly told that “the bed is for bedtime” so im in my recliner with my feet up.😬
My doctor did visit this afternoon, everything looks stable right now. they turned off the bicarb drip to help my kidneys, stopped the lasix and all of the other drip’s except antibiotics. Gotta keep those.
My WBC is 0, they are being fantastic with precautions with me. My platelets are at 14, maybe part of the nose bleed too. My creatinine just barely moved but it went down which is what we want to see! All other electrolytes get replaced when needed.

As far as the TILs go: I DID get my TILs, everyone that they made for me. The iL2 was supposed to come after the TILs to give them a boost is the medication that I didn’t get. The iL2 is very important in this trial, it’s given with TILs. Every time. But we were in a time crunch, there were multiple calls across the country to different physicians, and the decision was as made to not give it to me. It would have finished destroying my kidneys. I respect that decision.
So what next? I guess we wait until I scan and see what’s going on. I have no idea what’s going to happen but God does, He sure does. So this, again, is a leap of faith.
🖤T
Hebrews 4:16

I guess it’s time for an update. I’ve been completely out of it from the premeds they give prior to transplant or, my “Super TILs”.

Day one of TILs is 25% of the total dose
Day 2 of TILs is the other 75%.
So, the total number of TILs I received is between 2.5 BILLION to 1.5 TRILLION TIL cells ❤️

Now for the hard part. I am supposed to start a drug called iL2 the day after my TILs. But I can’t.
During the chemo phase and during the time my body was massively depleted, my kidneys took a huge hit. So I’m in kidney failure now. We are praying so hard about my kidneys turning around and not having to start dialysis. The renal doctor just came by. They are going to do more detailed urinalysis and an ultrasound of my kidneys. I am really praying that they can figure it out.
Please keep those prayers going.
🖤T

Hey all. Sorry for the delay. I have been so tired, just had no energy.

Being upgraded to ICU; in the Bone Marrow Transplant Unit there are 3 classifications of patients. They have:
Med surge type transplants (probably afterwards)
Step down type patients
ICU type patients. Stuff like I was or on transplant/iL2 days.
I wasn’t moved from my room, I just got a new set of nurses, more skill set to my bedside.
I am still considered ICU care.

When I was admitted I told them that zofran did not help me and one person said that drug was listed on the trial so 🤷🏻. Well, when I’ve taken phenergan every night for 3+ years, it makes a huge difference. That is part of why I was so sick Friday night and all day Saturday.
My Rapid Response was called on Sunday night.
My heart rate was 170’s
My respiratory rate was in the 30’s
My systolic BP was in the 70’s. (I sweet talked them out of an arterial line, ain’t no one dropping one in me if it isn’t Lori Smith. Period.
I really felt bad.
The room filled up within 2 minutes. They did a quick ECHO and saw heart strain and maked a fast diagnosis of “volume depletion”. They gave me 4 liters of NS and started me on a Levophed drip. And they gave me PHENERGAN to stop me from yakking all the time. I won 👏🏻👏🏻👏🏻!! It was also decided no chemo for Monday, let’s get me settled. I agreed with that! Monday was a recovery day for me, that was nice. AND! My counts were zero! They said Tuesday’s chemo was debatable, depending. So, this morning - counts are still zero!
I finally ate half a cup of soup from Panera this afternoon. It was delicious 🤤 and I’m drinking tons of water.
Super TILs start tomorrow 🫠 I’m nervous, scared, excited, emotions are everywhere. My nurse just came in and reassured me that TILs days are the best days -no worries.
So that’s where I’m at. I get 25%of my TILs tomorrow and the other 75% on Thursday. Pray hard those little soldiers do their thing.
I love you guys, thank you for everything.
🖤T

Super short update. Due to some complications I have been upgraded to ICU. I covet your prayers.

I’m sorry for not updating or answering texts. Yesterday afternoon and last night was awful. They are working on finding the right combination of meds to help me get through this.
This is hard. Day 2. Same chemo as yesterday.
Just pray that I start feeling better please.
Only 3 more chemo days left and I only have to take one.

I’ve been pre medicated.
Chemo has started!
Chemo #1 goes over 2 hours
Then chemo #2 goes over 30 minutes
Mesna (protects my bladder) goes for 22 hours
That’s today’s schedule.

My nurse is fantastic and she has a cute lil student with her.
Getting this done! I’m so glad Jesus is here with me. No way I could do this without him and Richard.

Edit at 1047am. Central line placement 0/10. Do not recommend. That wasn’t fun AT ALL. Carry on.

They work fast around here. I was to show up at 6am to be admitted and readied to go to Interventional Radiology for a quad lumen central line placement.
By 0640 my admission was done, I was weighed, port accessed, labs drawn, in a gown, ready!
My nurses (they are night shift) are fantastic. They “get” me. They have that twisty humor like most nurses do, it’s fantastic. They LOVE my cape and hat. Love it. They said I had the right attitude showing up like that. 😬
The nurses gave me ”the talk” about everything that I need to do from my side to help things along. Stuff like getting out of bed, walking as much as possible, using an incentive spirometer, all of the stuff.
So, at 8am IR will come get me for my central line placement. I’m not really looking forward to this but, I gotta do it, so .. on with it!
I’ll be starting chemo soon after I get back from getting my line. I’ll be posting lots, mainly for myself to look back on later but I’m glad you all are along for the ride.
Patient Number 3
Super TILs
First In Human
Let’s Go Make History
Pray that I am strong enough 🖤
No Visitors other than Richard. My immune system wil be way to compromised to risk it. You guys can love me from afar. We will get together when I break out of here ❤️

Last night my parents came to see me (masks and No hugging, quarantine style) before I am admitted for Super TILs and brought some surprises. Thank you to those that sent special things, I am going to try to write thank you notes while I’m locked up.
They also brought a banner. To those that put this together and made it happen and those that sent well wishes, I thank you. This will be hanging in my hospital room for all to see. I will post a better picture when it’s up in my room. This is unexpected and absolutely fantastic. THANK YOU, I love you all! 🖤

I wanted to post some pictures throughout my melanoma journey, since August 2017 up to yesterday, mainly so I can have them all in one spot. 🖤

Well hello! I’ve thought for a while about making a page to document my journey with stage 4 melanoma and since I’m getting ready to start a phase 1/2 trial, what better time?
I’m a 46 year old woman with a wonderful husband, 2 fantastic children, 3 protective brothers, 3 hilarious sister in laws, 2 amazing parents, a HUGE supportive extended family and countless friends and co-workers. My support system has made the last few years tolerable.
I am a registered nurse with experience in ER, critical care, flight and currently a stroke coordinator. I am passionate about my career, teaching and building others up.
I love traveling! Anywhere and everywhere is on my list.
I also have stage 4 melanoma. This journey started in 2017 when I noticed a mole on my lower slightly left abdomen changed. At the time I thought the waistband on my scrubs had irritated it. I “doctored” it for a few MONTHS before I went to my dermatologist. He knew immediately that it was melanoma. After the Wide Local Excision and Sentinel Lymph Node Biopsy I was diagnosed as stage 2b. At the beginning of 2018 I met my oncologist and started immunotherapy (Opdivo). I was one of the first in the nation to get immunotherapy at stage 2b. All went well for the first 6 months until I got toxic on the drug. I had severe colitis and ended up in the unit for a week on high dose steroids. It took me another 6 months to recover from that and I also gained 50 pounds from the high dose steroids. I had a time. I couldn’t scan for that 6 month recovery period because inflammation will make a PET scan look positive, I didn’t need that. So I didn’t get to scan until January 2019. And melanoma was found in my left lung, the lower lobe. Stage 4. I was devastated and very afraid. I had surgery to remove that part of my lung, that wasn’t as terrible as I thought it might be. Hard but not awful. After that I started a combination oral therapy called Tafinlar and Mekinist. I was on this combo for around 3 months. It was terrible, the high fevers, rigors, flu like feeling, a terrible and very painful rash on my legs .. I was afraid to stop this therapy because one had already failed, could I afford to let another fail? My oncologist made the decision to switch to another oral therapy, Braftovi and Mektovi, kinda the same mechanism of action but didn’t have the side effects. My next scan and the following 2 years if scans were NED. We celebrated. Until June 2021 when “multiple tumors” were found in my left o***y. Another surgery, complete hysterectomy, and stay on the current treatment. My scans were NED again through March 2022. The night before that scan in March I rubbed my hand across my upper abdomen and felt something the size of a pea. I almost panicked but I was scanning the next morning at 7am and I was able to get it through my head that my scan wouldn’t be clear. My concern was where would it be? I ended up having 2 subcutaneous lesions, the one I felt and one behind my right kidney. My oncologist decided it was time to refer me to another university for evaluation for TIL Cell Therapy.
TIL = Tumor Infiltrating Lymphocyte.
I was terrified to leave my team. I trusted my team, my relationship with my physician, nurse practitioner and nurse was amazing. I love them.
Luckily the physician I was referred to is in the state that I live in (Kentucky) and is only a 3 hour drive from home. And he, his nurses, residents, surgeons and clinical research nurses welcomed my husband and I with open arms. And as it turns out, I qualify for the TILs trial!
So let’s talk about TILs;
when melanoma tumors are removed lots of them will have “brisk, active TILs” present. That’s good, it means my body is trying to fight the melanoma but there just isn’t enough TILs and they aren’t quite smart enough. So, for this process, a tumor is removed (that’s already been done) and sent to a specialized lab for TILs extraction. They take the TILs and genetically modify them to make them able to recognize the cancer better. Then they grow billions and billions of them. This step is done.
The next step is for me to be admitted into the hospital, get IV chemo for lymphodepletion and then receive the TILs. This trial is very promising and could lead to a cure for me.

Things to know:
1. I love Jesus and will talk about my faith a lot.
2. Be nice or I will delete you, no drama needed here
3. Please don’t send me “natural alternatives” for treatment if melanoma - believe me, I’ve looked at them all.
4. No political posts here

Thanks for being here. I’m in quarantine now waiting on my admission date for TILs. My story will continue in a few days as I’m admitted. You are welcome to travel along with me and let’s all pray for my miracle.