December 2022

2022.December.03 - back home

There is a whole NET department at Mayo. They know Carcinoid Syndrome, and yesterday we met with the primary doctor who set up this particular trial.  He went into specifics about how Differentiated and Undifferentiated tumors are completely different animals, just to begin the conversation. Shelli, having the well-differentiated type with high proliferation rate, is the problem-type. We knew that bit of information.


What we didn’t know, was how Cisplatin and Etoposide would never be the first choice to treat this type of cancer. The doctor definitely showed understanding as to why it was recommended to us, however, considering the rarity of Shelli’s cancer – it is an aggressive cancer, and it makes sense that an aggressive form of chemotherapy be used.  He also indicated that a normal oncologist would never be able to keep up with the nuances of something so unusual as this, as the details are easily overlooked. Even if Shelli is not randomized onto the Lu arm of the study, Mayo was absolutely worth the trip -- just to be educated on the the various chemotherapy options.


Chemotherapy Options Explained: The doctor was able to share how CAPTEM would be his first choice of chemotherapy for Shelli’s G3NET, and how there are other chemotherapy options before Cisplatin and Etoposide become something to consider. He mentioned FOLFOX as one, Everolimus as another, and also Afinitor. He mentioned the possibility of the tumors shrinking being only one aspect as to why these are the preferred options for this type of cancer.  But also the G3NETs are slower to develop tolerance to these types – which translates into the ability to be taken for a longer amount of time.


Success with G3NETs currently is that the tumors don’t grow.  That is it.  Even better, is that the tumors shrink.  There is no cure.

With both CAPTEM and Lutathera (the guided missile with the Dotatate Radiation), tumors seem to shrink about 20-30% of the time. Outside of this study, however, they are only testing Lutathera after chemotherapy has already taken place.  The starting point of overall health of those people who have started Lutathera is therefore diminished while the starting point of the cancer is increased.


We may know as soon as Monday or Tuesday, about acceptance into the study or not -- we had previously been told 7-10 days.  The study's lead oncologist doesn't see any reason why Shelli wouldn't be a perfect candidate, but they have to coordinate as a team to look further into the details.

We are praying for 1. Acceptance into the Study, 2. Being randomized into the Lu arm, 3. Schedule working out for travel, 4. Finances coming together.

God works and He is present.  He can work through doctors, or He can provide supernatural means - for our good and for His glory.  Our work is obedience in faith.  Our joy is in Him.  Considering the current expectations of G3NETs, we are realistic.  And we are optimistic.  And we are hopeful.

2022.December.14

We haven't received any official word from Mayo yet, but it could arrive any moment.  That doesn't mean we haven't been in contact with Mayo.

The unlikely, best-case scenario is to start radiation on January 10th, pending:

1. Shelli being accepted, 2. Shelli being randomized into the Lutathera-arm of the study, 3. The shipment of radioactive isotopes arriving in from Austria (Germany?) in a timely fashion after the holidays, 4. A bed available at Mayo with lead-line walls. And other sundry details.

This news was a downer overall. We were not wanting to wait another month to start. It's been 7-weeks since the original diagnosis, and we know that time is of the essence.

Shelli's pain comes in waves, but is manageable overall. It's in those moments when discouragement arrives, and it's hard to be satisfied in the waiting. Then we remember that none of these details escape our Heavenly Father. How things came together 10-days ago was far better than anything the prior six weeks offered. We are sure of Him, as we are connected with the experts who are helping us to (potentially) leapfrog over the standard treatment.

That being said, we could still be randomized into the control arm of the study, which is chemotherapy. If that happens, treatment would very likely start sooner.

We are praying for patience.  And we are figuring out how to be poised and ready for whatever comes, when it comes.

2022.December.23

At the end of last week we found out that I did not get accepted into the Mayo trial that we were hoping for. At first that felt like an answer–as in a closed door type answer, but an answer nonetheless. We were disappointed for sure, but we thought that meant we needed to return to the local oncologist and start chemo treatments. At that moment, having an answer, even one we didn’t want, made me feel relieved. Then, a note came from the doctor at Mayo that offered another option. So, the stressful scramble began. Being a Friday we were approaching the weekend–and a weekend before a holiday to boot. We knew we had to move quickly to get answers if we wanted to jump into a treatment plan anytime soon. We put in texts and calls to various doctors and nurses…and then we waited. We had already been leaning towards setting up camp at my parent’s house in Minnesota while I started the trial in January. Chris had been able to reach out to several jails in Wisconsin that have Southern Health therapists located in them, so he opened up doors to be able to work from the land of snow. As we digested that we wouldn’t be starting anything at Mayo any time soon, we decided to put a plan into place to still head to Minnesota, but mostly to celebrate Christmas with my family, and figure out the medical things from up here. We decided that would allow us to be close to Mayo if anything changed and to have a white Christmas. Monday morning the drive began–we loaded up a dog and a bunny and a pile of gifts amongst our luggage. Chris drove about 10 hours–landing us in Iowa for the night. Somewhere in there we received a call from our Oncologist in Tennessee. We updated her and discussed the two options as we understood them at that point. That made Tuesday an easier driving day–Chris and Aidan split that up–and we beat Dad and Mom home. Sitting in the car did aggravate things and I dealt with a little more pain than I’ve been having. Mayo also reached out and scheduled a video call for Wednesday morning.

So–Wednesday morning arrived and it was during that call that A LOT of questions were answered–even questions we thought we already knew the answer to.

We understood that our options were to 1) wait 2-3 months and hope that the tumors progressed enough to allow for eligibility into the trial. *Now, that choice as we understood it meant that I could still be randomly selected to take chemo… so we thought why wait and let the tumors grow just to maybe get into the trial and maybe still end up on chemo when I could start chemo in Tennessee almost any day. Leading to option 2) start chemo in TN. The form of chemo we learned about at Mayo (CAPTEM) has been shown to work for a year or more in patients like me before the tumors learn to tolerate it.

Come to find out, those are my two main options, but waiting to see if I can get in the trial does not come with the risks that we thought it came with. This cancer is considered aggressive, yes, but yet not fast-growing like lung or breast cancer. In those cancers–at this stage–you would NOT want to consider any type of “wait and see” approach. We also came to understand that the Sandostatin shots have slowed down growth for many patients for several months before they had to switch to another type of treatment–so, in reality, taking the shot isn’t just a “wait and see” approach.

Near the end of the call, Chris asked the question, “if this were your mother, what would you advise her to do?” The doctor explained that either of the two approaches are good choices. The shot, with close observation of tumor growth, has more of a chance of allowing me the opportunity to get into this trial after the tumors start to tolerate it. And therefore, choosing that option is choosing to shoot for the trial, which is important to me. I teared up explaining to the doctor that because many went before me and did various trials for Thyroid Cancer I was able to quickly receive treatment for that cancer in August (at age 17) and start my freshman year of college in January as a healthy 18 year old. I want to at least try to go ahead of those who will face this diagnosis in the future. All of that leads me to say that I have chosen to take Sandostatin shots monthly and get scans every month or two until the tumors show that they are growing despite the shots. At that point, we will try to get into the trial, and if I don’t get in at that point I would start the CAPTEM chemo. We were encouraged to think about the years we still have to make memories and have sweet times together.

Cancer Journey:

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