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There have been no online updates in a while, but there have been updates. As I was walking the path with Shelli, I didn’t quite have the words to describe the journey. At this point, I feel as though we are sitting on one of those benches placed on the side of the walking paths, and I can now gather my thoughts.
First, Shelli went up for her Safety Check in late April, and then again for her second infusion of radiation in early May. The Safety Check is scheduled routinely to be about 2-3 weeks prior to the next infusion, as they are looking to see how she is tolerating the radiation, and make any notes as to how it is affecting her, as well as to see if any changes are needed. These checks would not be done unless she were on the trial, as the standard, clinical approach would have all the expectations worked out by others who have gone before in their trials.
For Shelli, after the first infusion, about 48-hours after (so we thought all was well), she had a spike in her blood pressure that was concerning enough to stop driving home and find a local Emergency Department. After a clean brain scan, the process at the ED was to simply monitor her with a Tylenol. After five hours, the blood pressure returned to normal and the concern had passed. Prior to the stop, however, she also had a rather intense headache. The question was then: did the headache cause the blood pressure spike, or did the radiation?
After the second round of radiation, we think we may have the answer. Radiation does cause headaches, and headaches exacerbate blood pressure concerns. Shelli had a few headaches following this second round – two intense ones the week after, and intermittently some less intense headaches for another week. This time around she was able to stay ahead of the blood pressure concerns with the understanding gleaned from Round One. Knowing what to expect, and having a plan to put into place, the blood pressure was not an issue this time.
We now have Round Three scheduled for June 29, but prior to that, along with a Safety Check on June 14, the trial wants to do all the testing again. As the expectation is that there will be four rounds of radiation total, June 14th will be the half-way point of this part of the trial.
With this testing, they check to see if the tumors have stopped growing (that would be considered success), or if they may have potentially decreased in size (that is our hope, and be cause for a Happy Dance). It could also be that the tumors have continued to grow, but not at the rate as previously. As those tests take place in mid-June, we would love for your prayers to join ours in asking that the tumors actually shrink in size.
As we pray, we know that God leans low and hears us. We pray for the pain to be manageable – it seems to be. We pray for the fatigue to be manageable – it is not yet. We pray for the finances to be manageable – your generosity has been overwhelming. We pray to navigate this long-suffering with a peace that passes understanding, and an awareness of the presence of God through it all, and we have that.
Prayer Request: Fatigue is the current struggle for Shelli to navigate. As quickly as the pain may come, it also goes away with medications. In comparison, when fatigue rears its head, it is just as quick in coming on, yet it is slower to go away; it doesn’t have any medications, and isn’t as well understood. When you pray, Shelli and I would value prayers for her to navigate the fatigue well. As Shelli says, “that is what makes me not feel like myself—and that is discouraging.”
Throughout it all, we thank you and we can see that God is good.
This past Wednesday Shelli had her “Mid-point scan”. Well, not
necessarily the mid-point. If this were not the trial’s version of
radiation, which is Dotatoc, but rather if this were the already
clinically-approved version of radiation, Dotatate, it would be the
mid-point of treatment. As everybody here at Mayo seems familiar
with the standard of care, they all simply referred to this CT as the
mid-point scan.
But Dotatoc is
potentially able to have six infusions, with it being a lower beta-emitter,
whereas the officially approved Dotatate is only able to have four
infusions. So, there was some terminology I needed to work through:
short-hand versus technical.
STARTING AGAIN:
Shelli had her
potentially-one-third-of-the-way-through-this-version-of-radiation CT
Scan on Wednesday. The results were mixed, but essentially positive.
Although what the
scans showed was not what we were expecting, the doctors didn’t
seem phased by it. Shelli and I were expecting that there would be a clear
trajectory able to be seen – one way or the other. I had the impression that success was that the tumors stopped growing. Although not
expected, but knowing that God can do all things, I hoped in the outside chance of the tumors even shrinking in
size. What I prayed against, was continued growth.
What I didn’t
expect was that some tumors might grow, while others might stop their
growth, while still others might shrink – which is exactly what
happened. It wasn’t straight-forward – it was a mix-and-match,
and my emotions were likewise mixed. But now that I’m thinking
things through, and digesting the doctors’ responses, it makes
sense. Most growth comes in fits and spurts.
Before they even
started the first round of radiation, those running this trial had
identified three tumors specifically to keep track of, from which to base their future
measurements upon. Those three tumors grew in size but, “The
target lesions that we follow did not grow to the point of stopping
the trial,” was the high-level summary.
In short, if they
grew too much they would discontinue the trial and move into the
approved treatment. And ‘too much’ is a series of mathematical
formulas as long as my arm, but the ball-park range is when they grow
to the point where they’re no longer measuring in millimeters.
So: we’re staying
the course. Two more radiation infusions of Dotatoc are coming up,
and then another CT Scan. After which there might possibly be
another two more trial versions of the radiation.
Of note, the tumor that started it all, the one in her intestines that caused so much pain and brought her to the hospital, has shrunk. Hallelujah!
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