Archives for December 2022

When I was diagnosed with stage 4, incurable cancer in November of 2014, my oncologist gave me 16 months to live. When we asked her about clinical trials, she said, “That would be very expensive.” If it weren’t for my physician father, we might have accepted that answer. In which case, I would not be here today to share my story. I ditched that doctor, and we got a meeting with Memorial Sloan Kettering in New York City where I enrolled in my first of four clinical trials. Our goal at that point was to buy me more time – more than 16 months.

This post is specific to my fourth clinical trial done at UPMC—Pittsburgh in 2020 for metastatic ocular melanoma (OM) (or uveal melanoma). Unlike my previous trials that were specific to melanoma, this treatment is open to patients with the following cancers: uveal melanoma, biliary tract cancers, gastric or esophagogastric cancer, sarcoma, mesothelioma, neuroendocrine cancer, squamous cell cancer, merkle cell carcinoma, mismatch repair deficient and/or microsatellite unstable cancers. If you are newly diagnosed with OM, my post called The Best Worst Thing recounts my initial diagnosis and treatment when it was contained in my eyeball. When it comes to navigating treatment with metastases, I always tell people, you have to be very careful in your treatment selection as some treatments might make you ineligible for others. I have been incredibly blessed to have a team of doctors all over the country, including my father who is an internist, working together to find the best possible treatments options for me. Get a second opinion. Build a team. Be the squeaky wheel. Make sure all the OM docs know who you are. You can see who many of these doctors are in my post about My Clinical History.

TIL treatment is laborious (like most cancer treatments). Before the extended hospital stay to receive TIL, there were a few steps involved. I’ve mapped out that and the treatment itself below. This was based on the protocol at UPMC—Pittsburgh under the care of the incredible Dr. Udai Kammula in 2020. The steps below are from my chemo-brained memory. If you’re exploring this treatment, I recommend watching Dr. Kammula explain it himself here. If you’re preparing for a TIL hospital stay, you can view my packing list here.

A couple of things to note:

• I dropped about twenty pounds during treatment. Pre-treatment, I worked out a lot to get my body stronger, and I did NOT count calories.
• Every individual experience is unique, so your timeline could look different than mine (especially if you’re receiving treatment at a different hospital) and results vary.

Extract Tumor(s)

Dr. K laparoscopically removed a couple of tumors from my liver. This is no simple procedure (it does involve a major organ). I think it was a two-night stay in the hospital. We flew to Pittsburgh for the procedure. It left me feeling very sore and breathing was difficult. I had this procedure on July 23.

Cell Analysis by Dr. K

We then waited for word from Dr. K on how my cells responded when he tried to grow the TIL (tumor infiltrating lymphocytes). He told us this would take about two weeks (we heard from him just shy of two weeks) and that one of three things would happen (the first being best case scenario):

1. I grew the TIL and there was strong reactivity, and we’d move forward with treatment. However, there are no guarantees of effectiveness.
2. I did not grow any TIL, and we would not move forward with treatment.
3. It was hard to tell the level of reactivity, but since I grew the TIL, we’d still move forward, unsure if it would be effective.

Leukapheresis

My result was best case scenario, so I flew back to Pittsburgh for a leukapheresis procedure (which would happen for 1 and 3 above), where they circulated my blood in and out of my body four times to extract white blood cells. This was an uncomfortable, daylong event (perhaps six hours in total once I finished with IR  and TBH, I cannot remember what they put in me/on me in IR). It made my whole body numb and tingly (a result of calcium deficiency from the procedure) so they fed me ice cream which I did not complain about, and I watched shows on my computer. It was tough, but when it was over, I went back to feeling totally normal (and had an encouraged milkshake for dinner). The point of this was to extract my white blood cells which were then fed to my TIL to multiply it from the millions to the billions. This took place August 25.

TIL Therapy Hospital Schedule

Monday, Sept 7: arrived in Pittsburgh
Tuesday, Sept 8: COVID test, met with Dr. K
Wednesday, Sept 9: check in, get port, day 1 chemo
Thursday, Sept 10: day 2 chemo
Friday, Sept 11: day 3 chemo
Saturday, Sept 12: day 4 chemo
Sunday, Sept 13: day 5 chemo
Monday, Sept 14: day 6 chemo
Tuesday, Sept 15: day 7 chemo
Wednesday, Sept 16: TIL infusion
Thursday, Sept 17: IL2 (x2)
Friday, Sept 18: IL2 (x2)
Saturday, Sept 19: IL2 (x2)
Saturday, Sept 19 – Tuesday, Sept 22: felt really crappy and around the time of my free haircut
Wednesday, Sept 23: turned a corner
Thursday, Sept 24: removed port
Friday, Sept 25: discharged
Saturday, Sept 26: flew home

Hospital Check-In and Port

My husband and I arrived in Pittsburgh on Labor Day (Sept 7). I had to have a COVID test, otherwise, we would have arrived a day later. On Sept 9, we checked me in to the UPMC—Pittsburgh Shadyside Hospital and Spa. I received my tri-fusion port (which strongly resembled a nipple tassel) that afternoon and decorated my room like a dorm room.

Chemo

I had chemo once a day for 7 days, starting the day I got there. The first two days I had cytoxan chemo treatments, both lasting 2 hours. The worst side effects were drowsiness, nausea, and being hooked up to a machine 24/7 (making me pee for what felt like every fifteen minutes) because I required lots of fluids. I was mostly lower energy (but still had some). Friday evening, I broke up with my robot and felt so free walking to the bathroom alone. Saturday morning, I was able to shower, and it was glorious (although showering with the port was tricky). The next five days, I had the second form of chemo (fludarabine) daily. This was a 30-minute drip and the side effects weren’t as bad because they gave pre-meds each time I had chemo, which helped with nausea but made me very drowsy. I developed an itchy rash on my neck and scalp. They weren’t able to give me any form of steroids, even in lotion, so I powered through it with calamine lotion (provided by hospital) and ice (this is when having a scarf to hold the ice-pack was helpful – see my packing list post). The beautiful thing about being in the hospital when getting chemo is that the amazing nurses were there to play whack-a-mole with any side effect that popped up.

TIL Infusion

TIL day! This was actually super uneventful. My TIL was in a small IV bag and took 22-minutes (my lucky number) to administer. I felt nothing out of the ordinary.

IL2

Shit got real when IL2 started, which was administered over the course of three days and six infusions. It’s important to note, some patients cannot handle all six and they will stop giving it to you if that is the case (and that does not mean it won’t work). My room went dark for about four days (started feeling cruddy on day three of IL2). It was tough. I lost my appetite and only got out of bed to use the toilet. Don’t worry, I was on my period which made it even more fun and led me to need a blood transfusion because as my husband stated in my Caringbridge update “aunt flo is quite heavy handed it seems.” I described IL2 as having a simultaneous stomach and respiratory flu: sore throat, congestion, banging headache, nausea, vomiting, diarrhea, hemorrhoids, body aches, incessant hiccups, rash, fluid in the lungs, low-oxygen levels, and rigors (crazy, teeth-chattering chills). And my hair started falling out during this time. Again, the nurses were at the ready with anything they could provide to combat the symptoms. And for some reason, Dr. K was super excited to see me feeling so crappy (I guess it’s a good sign!).

Discharge

Once I finally turned a corner, I had to stay in the hospital to wait for my ABS neutrophils to improve. I ended up getting released on Sept 25 (day 17).

Back Home

Dr. K wanted me on a high calorie diet once back home and that is truly one of the greatest #cancerperks (I dropped about twenty pounds). I was very tired for several weeks. I think I took daily naps the first couple of weeks. I went back to work after 1-2 weeks home, probably part time to start. As the chemo flushed through my body, I had a weird rash that kinda moved about. I reported EVERYTHING to Dr. K. I was perimenopausal which caused hot flashes and fun-for-Nick mood swings. Then my period ended up coming back. Over all, it probably took about six months to finally start feeling like myself again.

Follow Up Care

Thankfully, due to the pandemic, I was able to do scans from Denver. I responded really well to treatment with the exception of one tumor that was misbehaving. Dr. K ended up surgically removing that in Sept of 2021 and rendering me NED (no evidence of disease). He continues to “watch me like a hawk.” I wouldn’t have it any other way.

I saved my packing list from my hospital stay for TIL therapy in 2020, and recently was able to share it with two friends starting TIL. I dedicate this post to Lindsay, Chrissy, and Monique’s partner. You can read about my experience with TIL therapy here.

Set Your Routine

I got some great advice from a friend who had a long hospital stay for a bone marrow transplant. She told me the most important thing was to have a routine each day. This was mine:

• Open the blinds
• Eat Breakfast, Drink Coffee
• Shower
• Get dressed and put on sneakers
• Set a goal of walking a certain number of steps in the halls each day (this varied depending on where I was in treatment) and try to stand once an hour
• Do an activity (I brought a travel yoga mat and would stretch, I wrote letters, I knit, colored, listened to music, read, and, of course, watched some shows)
• After dinner, back into PJs/slippers & close the blinds
• Movie or read
• Lights out at a decent hour because those nurses will be coming for your vitals and weight soon 😊

What to Bring:

Pillow & Blanket: Hospital bedding is not cozy. I bought a plush Ugg Blanket and brought my king-size down pillow. 100% worth the space in the suitcase.

Wraps (3 qty): someone gave me the wise advice to avoid zippers because they will catch on your nipple tassel (what I called my tri-fusion port). I bought a Nordic Beach wrap (this thing is heaven) and also brought a couple of long wrap sweaters that are open (for port access) without a zipper.

T-shirts (6 qty): I brought a combo of short sleeve and long sleeve—all v- or scoop neck (again, port access). Some were designated as PJs/night time.

Scarf: Because I run cold and my shirts were scoop necks, I brought a scarf and wore it frequently. It was a lightweight infinity scarf and came in quite handy to hold an ice pack around my neck when I developed a rash.

Fingerless Gloves: Again, always freezing.

Spaghetti-strap Tank (2 qty): Wasn’t really in the mood to wear a bra, so I brought one for travel there and wore spaghetti-strap tanks with built in bras for my hospital stay.

Pants (5 qty): 2 PJ (lighter weight and heavier weight) and 3 regular (all leggings, nothing fancy).

Laundry Bag (1 qty): Once or twice I sent clothes home with Nick to wash.

Socks (4-5 qty): Including a couple that are no-slip.

Shoes: Slippers (1 pair) and sneakers (1 pair).

Headwear: A knit beanie and a bamboo beanie (for when my hair fell out).

Underwear: Enough for your time there or less if you’ll have laundry access.

Shorts (1 qty): I brought a pair of running shorts just in case I was roasting at any point (I don’t think I wore them).

Eye Mask and Earplugs: This is essential especially for daytime naps and to drown out the beeping of machines and noisy neighbors.

Things to do: Yoga mat and resistance bands, knitting, books, etc.

Snacks: I’m gluten free, so I brought gluten free crackers, power bars, tea, and lemon heads (good for nausea).

Sign: I had way too much fun with this Felt Letter Board.

Electronics: I brought my SurfacePro to watch Netflix, obvi my phone, headphones, chargers (I got a 7-foot phone cord), AN EXTENSION CORD!, and if your phone does not have a kickstand, bring some sort of tripod or way to hold it up.

Décor: Diffuser, essential oils, and crystals. I loved my little zen corner. I also brought my Fuck Cancer cross stitch and put it on my wall along with a huge gallery of photos of people I love and me doing adventurous things to remind myself I’d be #OutLivingIt again soon. I packed sticky tacky stuff to adhere pics to the wall.

Other: Dry erase marker and ruler (I drew a calendar on my window of the schedule of events. My doctors loved it.) Canvas zipper bags to store electronics, crafts, etc. I like to feel organized and sitting in a bed with a pretty small tray felt crowded and chaotic at times (especially when they brough my food!) It was helpful to have the canvas bags to keep things in their place.

Toiletries: They gave me things like toothpaste, body wash, and lotion. If you’re on your period, you won’t be allowed to wear tampons so don’t bother bringing those and be prepared for the whole world to know about “aunt flo” as my husband called her in his Caringbridge updates.

Hair Stuff: I needed headbands and hair ties until I didn’t. Nick and I brought a barber kit, and he shaved my head when it was coming out (and his). Some hospitals might supply this.

How to Get Support

We found using Caringbridge as a way to keep friends and families informed super helpful (vs. individually texting everyone you know). Other people I know set up private Facebook groups.

Throughout the years and big events, I’ve had a few ways of getting my supporters involved:

1. Eye-patches: For eye surgeries or works for TIL (for uveal melanoma), too, ask your supporters to wear an eye-patch in your honor and share a pic to social media as a way to raise awareness and show their support (this could be done on the day you receive the TIL infusion).
2. Superman Ts: My husband and I wear our Superman T-shirts every scan day. My family does the same on big days (including TIL day) – any super hero shirt works!
3. Playlists: When I had Gamma Knife, I asked my friends and family to send me their favorite fight songs. I made a playlist that I still listen to (and listened to when I walked the halls during my TIL stay).
4. Gallery Wall: I printed pictures of friends and family and made a gallery wall in my hospital room. You could ask people to snail mail you pictures ahead of time.
   
5. Fan Mail: As soon as you get settled into your hospital room, share your address on Caringbridge or Facebook. Set expectations though! Discourage people from sending you anything because you’ll need to get it (and your slow self) through the airport. And suggest any mail arrive before a set date.
6. Provide GoFundMe or Venmo: People just want to help! This is particularly helpful for the caregiver. We gave Nick’s Venmo and people sent him money to buy him a beer or dinner while he took care of me. SOOOOOO many people sent us DoorDash and Grubhub gift cards which was incredibly helpful when we returned home.
7. Mealtrain: If someone offers to set one up for when you arrive home, SAY YES.
8. Hair Loss: My brothers, brothers-in-law, fathers-in-law, nephew, and father all shaved their heads with me.

I hope this is helpful! Be sure to check out my other blog on What to Expect with TIL Treatment.