Lutathera #1

 Nothing is impossible, the word itself says “I’m Possible” Audrey Hepburn

After a month of fighting with insurance and pleading with Novartis, Lutathera was started yesterday. It was a real win to be able to get this medication for free and to have insurance pay for all expenses associated with it. It turns out this is something that neither Duke nor Mayo has ever had happen. Amidst the fighting, Eric and I decided it would be best to exhaust every possible option.Before hearing from Novartis we had scheduled an appointment with a doctor at Duke who has a lot of experience with the treatment. About 2 weeks ago we drove down to NC and met with the doctor. His initial reaction to meeting us was “what do you think I can do, you are coming from MAYO” Ha! I think he was flattered that we came from Mayo to talk to him. He specializes in GI tumors so did not know much about Thymic Cancer but really, who does?? He was even more shocked that I was able to get the medication covered by the drug company, stating that he has never been able to do that.  Anyway, he was helpful, optimistic and reviewed a number of different options all of which lined up with Dr Dimous. And he did agree that Lutathera may be beneficial and is worth a shot- so our mission was completed. We wanted to get another research education facility to recommend the med and he did- we can put that in our back pocket for now use it if insurance causes any more problems. Additionally, I was able to find the physician who studied Lutaherea during phase three drug study. He practices at Moffitt Cancer Center in Tampa, FL. I reached out to his team who was very interested in my case and had my sister follow that phone call up with a visit to his office. YUP that's right, she drove to Tampa and delivered some medical records to his staff. After a little ‘boo hooing’ she convinced the nurse to get the records to Dr Strosburg. When they called me back, you would not believe the first available appointment he had…….November 24, the day before Thanksgiving. If it were anywhere else this would seem impossible but instead- it gave us a reason to go to my sisters for the Holiday. I can not wait to get his thoughts on the medication and nuclear medicine treatments. 

Eric and I arrived in Minnesota Sunday evening. It was an eventful trip this time, with my sodium dropping mid flight. I ended up doing the dry heaving nastiness in the middle of the Atlanta airport. And as Murphys law would have it, we ended up checking our bags at the gate in Norfolk to go directly to Rochester so I did not have my lasix or anti nausea with me. In order to try and get some of the fluid off I did what I had too—- look like a crack addict ——and nibble off a little piece of an extra tolvaptan pill and double up on NaCl tablets, and down some salty french fries (which I will admit was a bonus!) I started feeling better and releasing fluid just before having to board the next flight. Monday was Prep Day. The alarm went off real early after a long day of travel. Appointments started at 7:15 with a covid test, then CT of chest abdomen and pelvis at 7:30, blood work at 10 and later that afternoon was medical oncology consult and lastly Nuclear medicine consult. 

First up, the results. Well I'm not pregnant and I don't have Covid. SO that's a start. As every scan, this one does show some progression and some improvement. The newest tumor (and the reason we ordered the CT) is in my left rib and explains the pain I've had for 2 weeks. I suggested we just take the rib out, I mean after all God took one of Adam's ribs! I did get Dr Dimou to laugh a little at that, but regretfully he rejected my proposal. All in all he feels we are in a much better place than we were in March and April and was excited that we would be starting Lutathera! We decided to reinitiate Sandostatin, the very first medication used to help with tumor activity. Studies have shown increased efficacy of Lutathera when used in combination with Sandostatin. This will be given IM every month we are not in Many and the day after treatment in the months we are at Mayo. The “first” one will be today at 3pm. Pending Insurance approval. What they once covered in February without any authorization is now being denied!!! Here we go again. At the end of the appointment Dr Dimou made me laugh when he sounded as if he was about to start singing imagine dragons “radioactive”! It was very entertaining.

The consultation with Nuc Med was interesting to say the least. I had shared a link on a prior post (September 23) that talks about how the medication works and Monkia also shared it on facebook, so I won't bore you with the details. Monday night we met Lori and Jason out for dinner. We had a great time, some good laughs but we missed seeing her amazing kiddos. 

Tuesday was showtime! YIKES. The treatment took place in a hospital room and for starters the bathroom was lined with plastic and resembled a crime scene. So bizzare. Eric was able to stay with me during the prep (which was shortened because I was unable to get one of the nausea meds because of my allergy) and for the first thirty minutes of amino acid infusion and then had to leave when the radiative box entered the room and was not allowed back until completion of treatment. There was an episode of vomiting following the initiation of Lutathera but that subsided after some IV compazine and the rest is a blur since that knocked me on my ass and I slept almost the rest of the time. I say almost because I was able to order free meals during treatment so, to save a buck on meals later, I ordered hospital food for breakfast and lunch. 😂. I finished up around 3 with a sodium check which was, to no surprise because of fluids, low at 134. 

Before we even returned to the room, the strict precautions were- well-sad. After a very draining day I walked out of treatment and was not even able to hug Eric. It was official, I was radioactive and even had a membership card to prove it. Poor Eric had to sleep on the couch and will remain there for the next two nights. We needed a bigger room so we could maintain distance while he worked all day and I recovered, but none of the larger rooms came with double beds. We have to keep our toiletries, soaps, towels, drinks, food and clothes seperated. I have to rinse the shower out after every shower, let the water run after every hand wash, and double flush with the lid closed after using the toilet. As most women in their 40s, sneezing and not wetting myself has been a challenge but so far so good. If that happens there are a whole other level of precautions. If I get blood or vomit on any article of clothing, bedding or towels it has to be sealed in a bag for 60 days before it can be thrown away- yes thrown away, not even washed. The rules are crazy. After this evening I can be closer to Eric when we eat or pass by each other but must remain separated for sleeping and prolonged periods of time. We can not fly home until Friday so that I do not expose anyone at the airport gates or anyone I sit close to with radiation. I'm thinking it's time Eric gets his pilot licenses- that would simplify everything. 😦Kidding. After Friday the precautions loosen up and by day 7 I can resume normalcy. The doctor did say that I can swim on Monday which is safe for everyone unless I pee in the pool. HA! I'm looking forward to that. Its been one thing after another and with tumors in both hips and sacrum my goal of really getting back to running has been put on hold. Let me be clear, it has NOT BEEN CANCELLED. I will get back out there one day but in the meantime I just have to make do. 

My sister did post on FB about the prayer to Carlo Acutis, I will share below. 

Also, my friend Erica was able to get in touch with Franklin Grahams team. He is the son of Billy Graham and is here at Mayo right now. She asked his team to please pray for me and would you believe it, they responded. I will share that communication below as well. Again, thank you for every single prayer, thought, blessing, card, message, everything. Things are going to improve, I just know it. Miracles are going to happen. Love to all. 

https://www.padrepiodapietrelcina.com/en/prayer-carlo-acutis-ask-miracle-intercession/

From my friend Erica to Franklin Graham 

Hi! I know this is a bold

request. But, my dear friend

is at Mayo Clinic in the fight

of her life right now with a

rare neuroendocrine cancer.

I know Mr. Graham is there

recovering. If your team can

speak her name and pray

for her, I would be so

indebted. Your work is

amazing and I feel like I had

to ask.

She is a nurse practitioner

herself, a lover of Jesus,

and a mom of two beautiful

kids.

Please pray over her name.

Kate Scerbo Nelson

Thank you for spreading the

love of Christ.

His teams response……. 

Thank you for sharing this

with us. We are so sorry to

hear about this situation.

We are praying right now for

your friend at the Mayo

Clinic. We are praying for

Kate's health and that

God's comfort would

surround her.

God bless you both.