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Shelli met with the surgeon this morning, in order to have the diagnosis
clearly understood and all questions answered. Carcinoid Syndrome is
official, with the original tumor being in the small bowel, and others
growing in the mesentary, and then having spread to the liver.
Surgery
is expected for those tumors, although at the request of the
oncologist. The liver tried to fight those cancers, but instead was
overcome and metastasized. Surgery is not an option for the liver,
while chemotherapy was mentioned.
Our first appointment with the
oncologist is now scheduled for this coming Friday, and the surgeon's
face lit up when her name was mentioned -- a good sign. And our face
lights up at the sound of Jesus' name.
We don't cling to this life. We honor Christ while we live.
If we live longer, it is because we have work to do, service to perform, and glory to give.
Please pray for wisdom as treatment options are examined, and pray for peace in each day.
We met with the
oncologist for the first time yesterday, and we like her for many
reasons. Even though she is not one of the handful of doctors who
specialize in Carcenoid Syndrome, she came highly recommended by
other doctors and nurses for her collaboration, skill, and
intelligence. She listens well and answered our many questions.
Here is what we learned:
The terms
‘Neuro-Endocrine Tumor Grade 3’ and ‘Carcenoid Syndrome’ are
used interchangeably. Carcenoid Syndrome, when in Grades 1 and 2, is
not actually cancer, but rather ‘cancer-like’. For G1 and G2,
the treatment is clear and the prognosis is good. Usually treatment
involves removing the tumors and then receiving a shot of Sandostatin
once per month, ad infinitum. The oncologist we met with has a
patient who is in Year-16 of that process, with no problems noted and
no end in sight.
However, after the
tumors become well-differentiated, they start pushing out their
cancer-causing agents, and so that treatment option goes away, as we
are not dealing with the symptom anymore, but rather a cancer – of a
type that is not only rare, but also only beginning to be understood.
This is not ‘liver cancer’, where it is located, nor is is
‘colon cancer’, where it originated, but it is rather something
wholly different. The way forward does not start with removing the
original tumor, which we were fully expecting, because that tumor is
not interfering with anything. The focus is on killing the cancer
before it kills her.
The hopes that we
had for this initial oncology meeting was to explore options. Shelli
does not want chemotherapy, if any other option exists. Our
oncologist was very agreeable to hear that, and was willing to look
into every possibility – and she knows a NET-specialist or two,
over at Vanderbilt.
And so we left the
appointment hopeful. The thought was that as Shelli’s proliferation
rate, which is at 30-40%, isn’t all that high compared with 90%.
So, maybe, as bad as it is, it isn’t all that bad.
Nope. Doc called
back.
The oncologist consulted with the experts in Vanderbilt, and the answer came back, unequivocally, that the only way forward with any Grade 3 NET is chemotherapy. Nothing else.
The Details – The recommendation is for a scan (details in a sec), followed by 3-4 rounds of chemotherapy, then another scan to determine if chemo has been effective. Each round of chemo involves 3-days in a row of Cisplatin plus Etoposide administered intravenously, followed by a 21-day rest.
Our Thinking – We
are focusing on diet and nutrition right now – that can only be a
good thing. Even though we like fairy stories and mythology,
everything is on the table, including chemotherapy. Yet chemo is the
nuclear option (pun-intended), and comes last. And time is of the
essence.
We want to explore
everything. Nutrition are the troops on the battlefield.
Chemotherapy is an A-Bomb being dropped from an airplane – yet in
this scenario, that A-Bomb could just as likely take out the
airplane. So what do IED’s look like in this battle? What about
air assaults or even grenade launchers? We suspect that we can fight
with something that targets the enemy more than it targets the one
wielding it.
Our current understanding is that nobody is eligible for medical trials until after chemotherapy has been determined to be unsuccessful. That feels like limiting the arsenal of the army that wants to fight. It is acknowledged that Chemo with Carcenoid Syndrome is no better than 50% – and it weakens the body from top to bottom. Let’s just say that we wanted a medical trial – it makes sense to us that we start from an earlier point and a stronger condition. Now, if chemo were better than a coin-toss in Shelli’s situation – say it was 66% successful, then we would jump in.
Praise – Because Neuro-Endocrine Tumors are as rare as they are, there are few experts, it would seem. But this morning, as God hears the prayers of His saints, we found one. In the Mayo Clinic of Rochester MN there is a liver-specialist. And this very same specialist worked on Shelli’s liver in 2019, and cut away her liver-cyst, (aka Lester). God bends low and meets us. Grace for the day.
More on the Scan – we have an upcoming PET-Scan in the works, specific to NETs, called a Dotatate Scan. This is a recently developed scan that is designed to see where else in her body this type of cancer may have potentially spread – the lungs are of interest, but it’s apparently able to see system-wide. This scan should take place on Tuesday or Wednesday. And our follow-up meeting is scheduled with the oncologist on Friday to go over those results.
How to Pray – Pray that the Mayo Clinic responds quickly, and that the doctor there remembers Shelli and wants to step in to her new condition. Pray that the cancer hasn’t spread past the liver. Pray for a clinical trial to be identified quickly, and that it may accept her. Pray for discernment if a clinical trial isn’t possible. Pray for her body is able to improve from nutrition. Pray for Medical Insurance to play nicely throughout.
Shelli is connected with Mayo, as of today. We have submitted to be
reviewed for Clinical Trials, and should know some updates by the week's
end. From them we received very encouraging resources and follow-up
calls will be coming after they review the results of the CT Scan that
was already occurred. They mentioned how it is standard care to
coordinate with local oncology when treating patients who live outside
of the Rochester MN area.
Shelli has a PET Dotatate Scan scheduled
for first thing Thursday morning, the 10th. That scan is looking for
NET cancers throughout the rest of her body, beyond just the liver -
which sometimes happens in Grade 3. Then we have a follow-up
appointment with our oncologist on Friday to review those results and
see if Sandostatin shots can happen. They will reduce her symptoms and
it is possible (not probable) that they may slow the growth-rate.
We have an upcoming phone consultation with MD Anderson - which should happen by this time tomorrow.
Between
Mayo and MD Anderson, it is hoped for a trial to be identified. But if
not, we also have leads with Cancer Centers of America in Atlanta and
Moffitt Cancer Treatment and Research in Tampa.
Further Information: We
learned how Chemotherapy with Carcenoid Syndrome is only 50%
successful. Part of the difficulty is that the cancer is quick to
develop tolerance to chemotherapy - I had no idea. As in, Chemotherapy
initially appears to be working, but then it stops, and there is little
to no time to adjust.
Pray for no cancer in other areas of Shelli's body. Pray for doctors to be
willing to step into treatment with better potential outcomes than
chemo.
Pray for days when we struggle emotionally, to find our strength in Christ.
When we are weak, He is strong.
On Thursday, Shelli had a PET Scan – where her blood was pumped
with Dotate, which is the fancy stuff that allows us to see any other
Neuro-Endecrine cancers. On Friday, it was rather fun to watch the
oncologist walk through the inside of Shelli, where we were able to
see that the cancer had not spread to her lungs or to her heart –
both were very real possibilities. Praise the Lord!
Everything else was
confirmed, however, as we already knew. Mainly, her liver is
saturated with the cancer and needs to be addressed quickly. What
the oncologist was able to say, is that we don’t have much time to
start something.
During the course of
our conversation, she went from saying that we had days to weeks to
begin some form of treatment, to stating with with insistence, that
we need to move quickly. She was very supportive of a trial, and
mentioned how if she were in our position, she would also pursue all
the options that we have been tracking down. But she concluded with
the need to move quickly, no matter what.
The oncologist made
the analogy of a house being on fire. A good diet might reduce the
smoke, but not the fire. She was all for symptom-reduction, and so
we started the monthly Sandostatin shot – as that should make
Shelli’s symptoms reduce in intensity. But that is not treatment.
In fact, they called it “Palliative Care.” which would have been
funny except for what we’re dealing with.
We are willing to do
chemotherapy. We are just hesitant, as the odds of living over the
next 5-years are in the neighborhood of 50%, from our starting point
with NET (G3). We would like better odds, and that is why we haven’t
stopped looking at options yet. However, our hope is not in
Chemotherapy or in percentages, bur rather in Christ.
Tomorrow night our
church is having a prayer time for Shelli. The Small Groups are all
coming together, and we will petition the Lord on her behalf – that
He would grant her healing and full health. He is the Lord of our
health and so much more. He is the Maker of our bodies, and has
proven Himself as the Redeemer of our souls, and the Giver of life –
even after death. What He gives is always for our good, and for His
glory.
If we go the
Chemotherapy route, that decision will be made after Thanksgiving.
A Clinical Trial is
our preference. Chemotherapy is not off the table. Pray for
clarity. Pray for acceptance. Pray for peace. Please join our
church-body in prayer tomorrow evening, starting at 6pm.
In short, we are
moving forward with Chemotherapy. The port will be installed shortly
after Thanksgiving, and the first three-day treatment will be
initiated on the first Monday of December. Twenty-one days later the
second round will hit, and 21-days after that will be the third.
This much we know.
The emotional weight is
increasing today for Shelli. God’s grace continues to come in
abundance – in particular as His people pray. We get ongoing
encouragement from friends as they share how they, and people who we
don’t even know, are praying for Shelli; for her health, for her
strength, and for her witness to the watching world.
Thank you.
Okay. Mayo says they have something to offer that is not chemo. Possibly.
And so the hope is that we will be going to Rochester MN after Thanksgiving to find out more. We are being scheduled with two liver oncologists. We know that they know that if the only way forward is chemotherapy, we can do that from here. We also know that they know that time is of the essence. Nothing is firmed, but they are working on bringing things together – and we are poised to go off when that appointment is nailed down.
My immediate thought
went to Abraham and Isaac –not in the same sense of God testing
our faith, however – more like God is providing further evidence that He is
active and working on our behalf.
This whole process is a trial, to be sure, but neither Shelli nor I feel as though God is testing our faith personally It's more like He already has done that, and what He did before was preparation for where He has placed us now.
Shelli is willing to
do chemo, if that is to be the path for her. That may still be the
path, but God is opening up the possibility of healing through other
means, which is her heart’s cry. His evidence after our willingness.
We are praying that the dates open up for the Mayo appointment the week after Thanksgiving. We are asking that the possibility of non-traditional treatment offers more hope. If it does not, we are praying for discernment in choosing, and acceptance regarding, chemotherapy.
Thank you for joining us in that prayer.
Mayo was a success! We sat down with a Nurse Practitioner, a Clinical Trial Coordinator, a doctor who specializes in NETs, and two nurses – Mayo has a whole department dedicated to Neuroendocrine Tumors, as rare as they may be. They have a trial going on that seems, at least from our perspective, specialized for Shelli.
Understanding :: The nuclear option, the Cisplatin and Etoposide Chemotherapy, that we are lined up to start on Monday in Chattanooga, is both harsh and system-wide. I was under the impression it was the only way forward outside of a Clinical Trial, which is not completely accurate. There is at least one other form of chemotherapy that is considered a first-line chemotherapy, and there are second-line therapies that are not trials technically, but rather only become an option after an approved chemotherapy has failed.
The NET Team here identified another standard form of chemotherapy which is better tolerated than our currently scheduled version. This is the Control Group of the study.
The second-line therapy is called PRRT, or Peptide Receptor Radionuclide Therapy – a targeting-form of radiation called Lutathera, or Lu177. The Clinical Trial here is looking at this second-line therapy to become a choice as a primary-line, or possibly to replace it entirely.
Background :: Shelli had the PET Dotatate Scan done a couple of weeks ago. In
that scan, Shelli had Dotatate injected into her bloodstream, and the
PET Scan highlighted where the Dotatate found the NETs. This
radiation does the same thing, in that it seeks out the NETs, but
with radiation. The doctor here called it a Guided Missile – we
were hoping for a Rocket Propelled Grenade, but this sounds even
better.
The Possibilities :: The standard arm of the study is 14-days of pills (not infusions), followed by 14-days of rest. This can be done from our home in Dragonwood – and we would return to Mayo once each month for whatever they ask of us.
The Lutathera arm of the study is much more involved. My notes got messy here, but I remember something like the need to be in Mayo for two weeks out of every month for the next eight-months. I’ll know better if it actually turns out that this is the path that we go down – and we are praying that it is.
We have no control over which arm of the study Shelli is in – we
are either in the study or we are not. If we are in the study, the
computer randomizes Shelli into either the Lutathera-arm or the Standard-arm.
Fallback :: Either way, CT Scans will be conducted routinely, to see if the
cancer is shrinking. NETs can develop tolerance to the standard
chemotherapies, and what initially looks like success can quickly
become something else. It is possible that if we are randomized into
the standard arm, and the NETs become resistant to the chemotherapy.
If that is Shelli’s case, we would switch over to Lutathera, as it
is approved as a second-line therapy.
The Way Forward :: Tomorrow we start the process of getting formally approved. After we do whatever tests we have to, they take 7-10 days to review and see if they think Shelli is a good candidate. If it all comes together, we will be home on Friday, and will know whether we are accepted by mid-December.
What is currently scheduled for Monday in Chattanooga will be placed on pause until we know more.
We still expect that this will be a long and hard road. But now we have taken off the backpack, repacked it and tied the components down more firmly. Now the load is better balanced and more manageable. That is such a blessing. Grace for the day.
Shelli is exhausted, but feels very encouraged.
© Dragonwood