Tumor Infiltrating Lymphocytes (TIL) milestones and a personal journey.

Tumor Infiltrating Lymphocytes (TIL) milestones and a personal journey.

This is written for a patient and/or caregiver in mind but for all if you want the nitty gritty details.

Disclaimer: My writing is from my personal journey through a TIL clinical trial. If reading as a possible TIL patient or caregiver – please rely on your care team to clarify how your process could be. I also share lots of details so please do not let this discourage you from the trial because even as hard as it was, I’d do it all over again if promised HOPE to keep me alive. The process and research behind the treatment is truly mind blowing.

Overall thoughts:

• Caregivers: I would strongly recommend a caregiver joining you for each step of the way. I had to travel across the country so not only did I rely on the physical support but the emotional side as well. During my long stay, the actual TIL trial treatment, I had 3 caregiver handoffs – my sister to my husband to my parents. If possible, I would recommend you have someone with you as much as possible again for physical and emotional support and try to enjoy special alone time and make memories even though it’s not your ‘dream’ way to make memories.

• ***Please know each step, phase, milestone in the journey is NOT guaranteed and truly a blessing. My family and I cried happy tears and danced with each milestone I was able to meet and conquer.

• TIL is becoming an option for many cancers and close to FDA approval. Even if your oncologist does not present it as an option, I would recommend inquiring.

Milestone and Steps:

Step 1: Find the TIL site you would like to apply/be admitted to. For OM patient focus, I was only aware of MDA and UPMC. I spoke with both oncologists but ultimately UPMC was my first choice as the focus was truly OM and I had a close OM friend that had completed the same trial a few years before me. Also, the UPMC doctor (Dr Kammula and his team) has been doing the study and research for many years.

Step 2: Once you determine your location(s), reach out to the research contacts to determine the first step of the admittance process. I had to submit labs, disks of my scans reports and complete a questionnaire. 

Step 3: The research team reviewed my health records and files and agreed I may be a good candidate to move to the next step. We scheduled a virtual meeting and reviewed my history and what to expect at a high level if I complete the TIL treatment. My doctor was very clear that he will remove my big aggressive tumor (the whole tumor) and see if it grows Tcells but to be very aware and set very clear expectations once the tumor is removed it could go 4 ways:  

1. Nothing grows – Not a candidate for the trial.

2. Grows but with low potency and based on research would probably not be a good candidate to move forward with the trial.

3. Grows and is medium potency and based on research it could not work or could perform better in the body than in the lab – hard conversation and decisions with doctor.

4. Grow and is high potency and would be an ideal candidate for the trial.

At that time, I decided to move forward with removal of my whole tumor that was growing fast and causing lots of concerns. 

Step 4: Harvest Time. Currently surgeons are harvesting by a biopsy or removal of the whole tumor(s). The options can depend on size, location of tumor or preference of the surgeon or patient. By biopsy which although can be painful, a friend that went that route walked out of the surgery and enjoyed dinner out with his wife. In and out of the hospital. I chose removal of the full tumor. My full tumor was causing much concern and the location was easy to get too. My surgeon removed the 3rd segment of my liver containing the tumor. It was laparoscopic through my belly button but under with general and awoke in much pain and was on pain meds for a few weeks.  The removal of the tumor was painful, and I stayed 2 nights in the hospital just getting my systems functioning again and manage my pain. If I was local and could have gone home I probably would of just stayed 1 night but since I traveled in, I opted to stay in the hospital with good care instead of heading back to the hotel. The first 2 weeks was hard to get out of bed, move, I didn’t drive etc. By week 3-4, I hosted a surprise party for my husband’s 40th (with lots of help) but couldn’t carry anything heavily. I attended kids events just needed help setting up my chair, etc. Probably by week 5-6 I was pretty much back to normal driving. Prob took another month to be fully exercising and active again.  

Step 5: Did I grow TIL? About two weeks after my surgery, I got a call from my surgeon oncologist with the best news that my TIL grew and was very potent. The day we all prayed for and felt so blessed because I have met many to date that did not get that news or even make it to step 5. At this time my TIL was frozen until it was time to use it. 

Step 6: Now that my largest and most aggressive tumor was removed, I was scanned (MRI of liver and CT of chest, abdomen, and pelvis). These scans would then determine how fast I needed to start treatment. My first scans after the harvest were stable so we waited 3 months to check for changes. My second scan post-harvest showed growth of lesions left behind and at that time the research team prepared me for the next phase. 

Step 7: Leukapheresis: a laboratory procedure in which white blood cells are separated from a sample of blood and then the remaining blood is returned to the body. I headed back to UPMC and I had a temp IV (PICC) line set on my chest for an easy blood drawl and laid in a hospital bed for around 4 hours. I would expect longer but I felt lucky to be done so fast. The white blood cells are then added to the thawing TCells so the counts go from millions to billions. This combination will then be added to your body come TIL infusion day. This process was not painful, just a little uncomfortable but emotionally draining. Having to process why you are doing what you are doing and then laying there – super fatigued. The nurses are super amazing and bring you food and ice cream the whole time. The temp line is then removed and I headed home.

Step 8: The research team is combining the TIL and white blood cells and starting to wash the cells and prepare for treatment go time. The TIL continues to grow from the millions to billions. It was about 2 weeks between the Leukapheresis and being admitted into the hospital for treatment.

Step 9: Study baseline research labs, MRIs and CTs and clinic visit to review and final plan and prepare for the big treatment. 

Step 10: GO Time – put your big girl pants on. The true battle is starting and it’s going to take everything you have. I was in the hospital for 16 days but would expect longer. I didn’t know until day 14 I could consider leaving and day 15 I would probably leave the next day.

Day 1: Admitted to the hospital. Another temp PICC line (but more secure) is set on my upper chest for the duration of the treatment. This was amazing as all labs, chemo and TIL infusion are administered through this line. Thank goodness because I am a difficult IV stick so nice be to pain free with many draws each day.

Hair cut: With my specific chemo I would lose my hair. Please ask and double check just in case. My doctor recommended I shave my head before I came (I was not ready), once admitted before the second chemo infusion or at the very end. 

Also on Day 1: I had my first chemo infusion. The chemo doesn’t kill the cancer but wipes your immune system allowing room for the TIL to run rampant in your body. 

My sister set up my room. I didn’t know how long I’d be in the hospital – planned for 3 weeks so my sister decorated the room – I felt like a college dorm room. Party lights, tons of pictures of my family and friends, journal, comfy blankets, other surprises she had up her sleeve and a message board we could update daily to track the journey. I was also told, I could not leave the room – no walking the halls, nothing.

Day 2: another round of chemo and my sister shaved my head. Beyond emotional losing my hair but kept saying…this is good as I was admitted into this trial, I have true HOPE this may work and so many I know have tried to be admitted but unable to. Nausea was the main side effect and took meds to manage the intensity as it came and went.

Day 3: chemo infusion – nausea and really blah. Could still enjoy eating here and there and being with my sister who was my caretaker during the beginning of the stay.

Day 4: chemo infusion – nausea, fatigue and really blah

Day 5: chemo infusion – nausea, fatigue and really blah

Day 6: chemo infusion – nausea, fatigue and really blah

Day 7: chemo infusion – nausea, fatigue and really blah

Day 8: (Day 0) TIL infusion day. This was the best day emotionally. I was greeted by the nurses celebrating the day and from that day on I had my own nurse. My TIL is treated first class. On TIL transfer day my TIL had a private escort from the lab to my room. The Tcells looked like milk but could and would stick together easily so the bag was continuously shaken, massaged, and babied until it was put in the IV line to my body. Although I was so happy, I was emotionally drained and overwhelmed. It’s took around 17 minutes to infuse the TIL into my body. It was cool and could actually see the cells in the IV line. HOPE, true HOPE.

My doctor explained I should have an easy afternoon and night after the TIL infusion and the battle would ramp up after my first Interleukin 2 (IL-2) infusion. 

But my Tcells activated on their own and early evening I started the trial side effects: extreme nausea, vomiting and so fatigued. 

Although I had my own nurse, I was so blessed to have my husband by my side during this time. There were a handful of moments when it was ‘all hands-on deck’ helping get me comfortable again. Vomit bag, warm blanket, medication to stop the riggers, excessive and non stop vomiting and nausea, etc.

Day 9: IL2 #1 of 6, every 8 hours infusions. About two hours after the infusion, I would have extreme nausea, and riggers (uncontrollable shaking) chills – it was horrible. The first I didn’t know what to expect so waited until my body was in so much pain but lucky the drugs kick in and helped. At this point for several days – I struggled to focus, eat, read, etc. it was truly an out of body experience I had never experienced before.

Day 10: IL2s (completed all 6 infusions). Not everyone completes all 6 as specific labs must be taken and confirmed before. I felt lucky to get through all 6 but it was the worse experience of my life. BUT…again felt grateful I was able to be in the trial.

Day 11: Blah – Beyond fatigued, I struggled to focus, eat, read, be on a device, etc. Mainly slept and laid in bed all day.

Day 12: Beyond fatigued, I struggled to focus, eat, read, be on a device, etc. Mainly slept and laid in bed all day.

Day 13: Beyond fatigued, I struggled to focus, eat, read, be on a device, etc. Mainly slept and laid in bed all day. Was really over it waiting to turn the corner.

Day 14: Started to feel human again – I think I looked at my phone this day and had some crackers. Started to enjoy a conversation with my parents who were my caregivers at this time.

Day 15: White blood cell (WBC) low – had an infusion to help bring the numbers up. Ate a little more and felt a tid better than the day before.

Day 16: Another WBC infusion, final labs, PICC line removed, packed up my ‘dorm room’ and flew home.

There were various other little things that happened during my stay as my doctor explained I had to share everything, every symptom, every little thing. That led to more doctors involved than I wanted, one of them being infectious disease but with my levels and immune system being so low – they took every precaution and I was grateful.

After TIL Treatment:

6 weeks: Returned to UPMC for scans, research labs and clinic visit review side effects.

• Extreme fatigue, night sweats (walking from bedroom to bathroom was exhausting)

• Lost all hair on head, luckily kept my eye lashes and eye brows – head was so sensitive and hurt to touch.

• Weird bumps on arm

• No menstrual cycle

12 weeks: Returned to UPMC for scans, research labs and clinic visit review side effects

• Extreme fatigue

• Menopause like symptoms – night sweats, hot flashes, irritability

• Body completely out of wack, not balanced.

• Anxiety

• Hair started to grow back

Consulted with: OBGYN, PCP, Therapist, Oncologists

• Acupuncture 

• Therapist (mental health)

• Started back to workouts – Orange Theory.

• Non hormonal menopausal and anxiety meds

It was about the 5-6 month mark that I felt my body was getting to a good place again. I was fully back to Orange Theory – running and lifting weights, therapy helped my mind and well being and shortly after I returned to work full time.

Tips, takeaways:

• Remind yourself – each milestone is a blessing. Celebrate each milestone.

• If you get through the phases, in the hardest of days be blessed you got to this stage as so many don’t.

• Accept help: meal train, kids carpools, laundry. I hate asking for help but having help and my village was truly not only helpful for me but Paul and the kids as they were fully part of the process too.

• Journal and take lots of pictures along your journey

• Make a music play list – my fav songs for power and strength were ‘Turbulence’ by Pink and ‘What I have’ by Kelsea Ballerini

• Celebrate, Celebrate, Celebrate each and every milestone

Packing List and other suggestions from a close friend: My good friend Katie (OM Katie) wrote the below on her TIL journey – Katie continues to celebrate NED (No Evidence of Disease) and continues to provide so much hope and inspiration to our OM community and those along a cancer journey. She included a detailed packing list and other suggestions. This is a great blog and was so helpful to me and my family as we prepared for our journey. Hers is so good and detailed, I wanted to include it for all.

◦ Katie’s packing list https://futurehappyself.com/2022/12/29/tilpacking/

◦ Katie’s experience on what to expect (amazing for similar info but another perspective): https://futurehappyself.com/2022/12/29/til/

Best of luck with your TIL journey. My OM journey has been impacted for the best because of those that supported me along my journey.

I am forever grateful to my home care team in CO at UCH, all the doctors around the country consulting in my case and Dr Kammula and his team at UPMC. Truly amazing people.

Please reach out if I can be of support to you and your family.

Always LOVE and HOPE!