Hi folks, Kevin here:
I think we left off where I went into meet with my Interventional Radiology doc who had put in my first bile duck stent and drain. He was going to put in a larger drain in order to stop the leaking. At time,the first stent was put in, the word given to us was that it was impossible to put in a stent on my right side because there was ‘too much disease’ (their words) and so they went with the drain. But God intervened this time. Side Note: how many great amazing interventions of God have been described in writing as “But God?”. Once Dr Lee “got in there” he decided he could put in another stent and so he just did. Right then. He coiled up the larger drain and taped over it just in case but I had no more drain! And, by inference, this must mean that the Chemo did some good! This was huge, that thing drove me crazy. Having to have a bag attached to my leg 24/7 having to check on it and see if was filling up, having to drain it manually. Having it leak because I didn’t get the cap all the way on, and Rachel having to struggle to get Bile out of sheets. She’s got blood nailed, she can get blood out of anything but of course Bile is tougher. All these things brought me down emotionally, so it was a huge lift to have it removed, and by surprise! God gave us a lift for sure.
But now we are on “fever watch”. We just discovered a fever last night (Monday). Rachel called the IR doc and he advised re-connecting the drain and some Tylenol. and continuously watching. And so, after some stupid momentary resistance on my part, we did. We are hoping it is a blip, but if it continues or gets any higher we may need to go in again today.
And so it goes. Thanks to everyone who follows our story, by reading, writing, contributing in MANY ways, praying, asking others to pray, and just plain loving us.
Here’s the latest. and no I’m not converting to Judaism.
Here’s the update if you can’t see the video.
Ultrousound did not find any obstructions, but a special liver MRI was done also
That Liver MRI DID show a bile duckt blockage which is treatble. The plan for now
is to continue with the chemo to try to reduce the tumor without having to install a stesnt.
We recently posted a link to Facebook etitled: For Patient #1’s wife, melanoma is a thief (don’t let the Phillies fan art in the picture turn you away, no one’s perfect!). If you haven’t read it: it is a hard but very accurate account how metastatic melanoma affects a family (esp. the caregiver). Little did we know that post would foreshadow me becoming Patient #1 on a different clinical trial. Here’s the super small nutshell on how we got here:
Surgery / skin graft to take out the original mole (wide-local excision)
Test to check if melanoma has spread to surrounding lymph nodes, turns up positive
2nd Surgery to take out those lymph nodes (parotidectomy / neck disection) 3rd Emergency Surgery to fix subdural hematoma cause by vomiting severely after surgery
33 rounds of high-dose radiation to head and neck.
Red-tape causes disqualification of randomized Interferon / Ipilimumab trial so Interferon Alpha is chosen as standard of care for adjuvant stage.
High-Dose Interferon Alpha (adjuvant) brings major nausea and vomiting
Recurrence detected in the original location directly within the field of radiation!
2 cycles of Interleukin-2 at 10 and 8 doses respectively but cancer progresses.
TIL Therapy with IL-12 determined to be not-effective (likely because they had to reverse it) and cancer progresses further.
Go back on BRAF inhibitor (Vemurafenib) at Emory and add a MEK inhibitor to it then switch to another BRAF inhibitor (Dabrafenib) at UCLA
Symptoms and tumors start getting better for a few weeks, then tumors come roaring back.
So when you’ve already done all of this, a Phase I trial doesn’t seem too scary anymore… right? We’ve exhausted almost all of the treatments we know about, including the cutting edge ones. My cancer has officially “developed resistance” to all the drugs out there for melanoma. Liver area tumors are most likely back and causing nausea / vomiting 2-5 times per day almost every day now.
So after passing some emails back and forth with our UCLA Oncologist we learned of something new, just barely on the horizon, and we do mean BARELY. It’s called an AKT inhibitor. As you can see if you follow the link, the trial is not even open yet, unless you know Dr. Ribas at UCLA of course. 😉 The idea is that when BRAF mutant melanomas develop resistance they activate another signaling pathway (which allows the melanoma cells to replicate) called AKT.
While AKT inhibitors have been given to humans to treat other cancers, the combination with a BRAF inhibitor has never been tried. So I will be Patient #1 for this combination. Our doctors are hopeful because they have already seen success in human cell lines (these are tissue samples derived from biopsies just like mine). When they inject the AKT inhibitor and BRAF inhibitor into these cells in the lab, the melanoma cells start dying off very quickly. Our doctor used the word “hopeful” in describing this treatment option. So this is good news!
The next steps of the plan include flying home, getting some radio surgery for the brain tumor, picking up the kids, dealing with the tree that fell on our house, and flying back to LA to get started on the new trial. We hope to start on Tuesday October 22, and our plan is to stay in LA for about two months due to the high number of initial visits and because, you know, we have no idea what exactly is going to happen.
As you may know we recently flew to Southern California to meet with my “UCLA Doc” about a clinical trial. Searching for clinical trials is something we (by we I mean Rachel) does routinely in the Melanoma world. Because metastatic melanoma is so difficult to treat there is no real “standard of care” for it. Or at least, the standard of care isn’t very promising. Rachel found a clinical trial that looked very promising at UCLA and emailed my doctor about it. At first it looked promising, but almost as soon as we booked our flights the doctor emailed back with the crushing news that I actually did NOT qualify for the trial. But Rachel and I felt a strong sense that we needed to go ahead with our trip, as planned, and meet with him anyway. Boy are we glad we did! At this visit the doctor changed my existing medication (BRAF inhibitor) and added another one (MEK inhibitor). You may recall these sound familiar to you. We had tried this before, but at that time, there was a communication / logistical problem getting me started at UCLA and then transferring to Vanderbilt. Now, however, the two drugs are FDA approved and no longer require bi-weekly follow-ups at UCLA! Even though I have VERY close family and friends in So. Cal, and an amazing network of supporters, that many cross-country trips would not be sustainable. Though the data suggests that the combination of drugs is BOTH more effective and less toxic than taking either drug alone, taking the two drugs together is not yet FDA approved. But because my UCLA Doc is so cutting-edge he’s already prescribed this combination for several patients. Let’s just say he “works a little magic” with the insurance companies to get them to cover both drugs simultaneously. So he offered to do this for me as well. While this is great news, the data also shows that even though this combination is very effective, the cancer will develop a resistance to it in about 6 months and it will no longer be effective. So “on paper” we have “bought some time” as it were. But with God I have as much time as He grants me. As we try to remind ourselves “Praise God for another day”.
This is still the blog of The Hill Family but with a new name and a new look! We decided the blog needed a new, simpler look and while we were at it, decided to change the name (URL) as well. But don’t worry if you are already subscribed to get updates via Email or RSS you do not have to do anything! you will continue to get updates just as you have before. Also this does NOT mean that our email addresses have changed. Our email addresses are still at micah77.org.
As we enter a new phase of post-treatment waiting we came across Psalm 46:10 “He says, “Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth.” (NIV). We find this to be especially powerful in times of waiting. Also 1 Thessalonians 4:11 says “and to make it your ambition to lead aquietlife: You should mind your own business and work with your hands, just as we told you”.
So what is it that we’re waiting for? Well news! As you may know, after about 10 days of receiving my TIL cells, a severe toxcisity developed in my liver. It was very clear that the newly infused, genetically modified cells were the cause, but why? Basically some of the best doctors in the world told us, “Well dude, we just don’t know.” But it was getting so bad they decided they needed to remove and/or kill my newly infused cells ASAP or I would only live about 3 more days. But they weren’t sure if they could do it. After all this was not part of the plan, the cells were only supposed to generate an immune response, not have a frat-party in a major organ! But, praise God, through more chemo and a process called plasmapheresis, they were able to kill/remove the newly infused cells. This in combination with massive amounts of steroids (to calm down my liver), they were able to save my life. But if they reversed the treatment, what does that mean for the cancer?
Good question. The data (in mice) shows that having the TIL IL-12 modified cells for 10 days is a sufficient amount of time to generate a positive response. So what do we mean by “response”? In melanoma there are basically 3 categories of response.
Stable Disease – This means that your immune system is able to “hold” the cancer where it currently is and not let it get any worse. Also called “progression free survival”
Positive Response – This means scan results showing 30% regression or more (tumors are 30% smaller than they were on previous scans).
NED (the holy grail) – This means that scan results don’t show any cancer at all. Note: this is not the same as remission: it take about 2 billion cells to show up on a scan there may be very small deposits of cancer that are undetectable on scans.
So where am I now? My first set of scans (7/15/13) shows “Stable Disease” meaning no progression since the scans done immediately before treatment. This was to be expected because my body is still recovering and most likely not really able to mount a response just yet. But my next set of scans (8/14/13) will be the real determining set. These will show either 1, 2 or 3 above. So until then we aim to “Be still, and know that I am God”.
It’s a marathon, not a sprint. While waiting for my Neutrophils to come back, fevers and chills continue. My docs are confident that they are evidence of a positive immune response! Getting platelets and red blood cells infused now, but this too is completely normal. It’s exhausting and draining, but we are making it through one day at a time.
Special thanks to everyone who can/does donate blood and platelets. You are saving lives!
Hi folks, just a quick update for now. Thankfully, my cell(s) infusion was very uneventful. No side effects except for fatigue resulting from neutropenia, which was anticipated. I’m now down to monitoring only every 4 hours. Thanks for all the well wishes and prayers.
Well folks, today’s the big day. My docs just notified me that they will be infusing my “super cells” back into my body around 12-noon EST today. This is the climax of everything that we have been preparing for. The amazing/scary part about this, and the reason we call it the “spider man treatment”, is that my cells have been genetically modified in the lab. My doctor literally said “we’re going to infuse your cells over 30 minutes, fasten our seat-belts, and see what happens”. WUH? “See what happens?!?”. Most likely nothing will happen. But just as a precaution they will be checking my vital signs every 15 minutes for the first hour, then once an hour, then every 4 hours. They have seen high fevers, chills (a.k.a Rigor), and various other scary things they’re probably not telling me about, in other patients receiving cells. So what does that mean for me? In the words of Brandt from The Big Lebowski, “Well dude, we just don’t know“. Due to the “experimental” nature of the treatment, Rachel and I often refer to it is the “Spider-Man Treatment”. Maybe I’ll get a 6th “spider-sense“, that would be cool.
So for now we pray.
The Boisil Compline
Boisil, Prior of Melrose Abbey, died 661 BCE.
I am placing my soul and my body
in Thy safe keeping this night, O God,
in Thy safe keeping, O Jesus Christ,
in Thy safe keeping, O Spirit of perfect truth.
The Three who would defend my cause
be keeping me this night from harm.
I call on You, O God,
For You will answer me;
Give ear to me and hear my prayer.
Show the wonder of Your great love,
You who save by Your right hand
those who take refuge in You from their foes.
Keep me as a apple of Your eye;
hide me in the shadow of Your wings.