I just wanted to share this post as a request for prayers. I apologize in advance that this post won’t be as much of a masterpiece as prior have been. It’s more of an update and request for prayers. We went back to Houston on […]
The past two weeks are the closest Grace and I have come to experiencing ‘normalcy’, and it has been a complete blessing. We have great hope. Her most recent scans from 12/20/18 show continued improvement without evidence of active malignancy (PET shows no new FDG avid disease, and all known lesions measure 1.8 SUV or less). She is now done with 6 cycles of chemotherapy, but will continue immunotherapy (pembrolizumab) and possibly undergo radiation. Unless her health changes, we will continue 4 cycles of immunotherapy followed by repeat scans. We are nowhere near out of the woods, but her response to therapy has been the best we could have hoped for and she is doing incredibly well.
Backtracking a bit, I want to share what has transpired since my last post. At the beginning of December between Grace’s 5th and 6th cycles of chemo, we traveled to Boston for a thoracic surgery consult at Brigham and Women’s Hospital, and we visited with the world experts in NUT Midline Carcinoma at Dana Farber Cancer Institute. Given her low white blood cell counts and everyone coughing on the plane, we wore hospital masks and sat in the back corner of our flight. No one sat next to us, despite both flights being “full,” so the masks did their jobs.
Starting with the surgical consult, the surgeon we met has operated on 5 NUT patients with virtually all of them having recurrences in the postoperative period. Though he was amenable to a left lower lobectomy with radical lymphadenectomy of the mediastinum, he wanted to leave that decision to medical oncology. We all agreed that now is not the time, and there likely will not be a time, but we wanted to investigate the option. If anything, we would pursue radiation, and if she remains recurrence-free after radiation, only then would surgery be considered; it would still be very controversial and we would be very hesitant to proceed (The rationale for surgery in this setting would be to remove the previously affected lung lobe with the goal of eliminating any microscopic disease that remains, since the pattern of recurrence for patients with thoracic NUT tends to occur in the mediastinal nodes and near the site of the primary tumor).
Later that day we went to Dana Farber Cancer Institute for a consult with medical oncology and pathology to meet the doctors who have the most experience with this disease. Since literature tends to lag a few years, I was hoping to hear about a number of success stories that had not yet been published, but they only shared one additional case that I did not know about. To this day there are really only three known long term survivors with this disease. After a lengthy discussion, I felt comfortable that we have options and a contingency plan in place. If her next scan showed progressive disease, we would enroll in a clinical trial as opposed to switching to an alternative chemo regimen. Historically, patients have not responded well to a second chemo regimen if they fail on the first regimen. They also discussed trial options with us, highlighting two trials opening soon and a third trial opening in about a year. If her next scan showed improvement without any new metastatic lesions, we would hold off on the trial, with the plan to pursue consolidative radiation to the left lower lobe and mediastinum. We could also continue pembrolizumab, since she had such a great response with combined chemotherapy and pembrolizumab.
On 12/20/18 Grace’s scans showed further improvement. PET demonstrated previous malignant sites now at background activity and no new sites of malignancy were identified. Thus, we would proceed with the plan to pursue radiation. After multiple radiation oncology consults, and a variety of opinions, it seems the general consensus is to hold off on radiation unless we see a recurrence. (Essentially, since she has no targetable disease on CT right now, radiating would require the radiation oncologists to radiate a large field. This raises multiple concerns: 1) it could put her at risk of severe toxicity such as pneumonitis and cardiac toxicity, 2) it could limit our ability to radiate in the future due to dose concerns, and 3) it would require her to suspend pembrolizumab for the 6 week period of radiation.
When we met with one of our oncologists on 12/21/18, he was happy with Grace’s progress. He considers her in “controlled remission,” which I know is just semantics, but it gives us hope. If she were enrolled in a clinical trial, they would likely consider her a “complete response.” We’re hesitant to tell people the word “remission,” because most people hear the word and think “oh great, so you’re good again,” when it’s a little more complicated than that. Controlled remission means that you are disease free on your scans while you are on treatment, and Grace has been on treatment and will continue to be on treatment for a while. True remission is being disease free off of any kind of treatment. Some would say a “cure” in oncology terms is disease-free scans for 5 years without treatment.
Given her excellent response/controlled remission/whatever you want to call it, our oncologists tentatively want to continue Grace on pembrolizumab for 35 total doses, and she will now be off chemotherapy unless she has a recurrence. Our oncologists think that the immunotherapy is the key ingredient in Grace’s success, the rationale being that the chemo probably lysed the tumor, but the immunotherapy probably being the thing that picks off any remaining cancer cells. If she were to have a recurrence, we would either switch to a clinical trial or re-start chemotherapy since she has not failed chemotherapy.
We asked about the possibility of continuing chemo now, but our oncologists did not support that idea. The carboplatin carries an increased risk of a hypersensitivity reaction now that she has had 6 doses, and the paclitaxel would be extremely hard on her bone marrow. Normally they only do 4 cycles of this regimen, but they extended it out to the soft maximum of 6 cycles in Grace because she was responding so well and her body was young and healthy enough to take the beating. All things considered, that afternoon when our oncologist summarized how well Grace has done was the greatest emotional high I have had in the right direction since our wedding day.
Later that night, we had a unique opportunity to meet with the longest survivor of NUT midline carcinoma, Joe Schwartz, who is now 10 years from initial diagnosis. Having recently moved to Southern California, he lives about an hour away from us and when he met Grace he let her know that she is the only NUT patient he has ever met in person. Hearing his story and spending time with him was reassuring for Grace and myself. It’s the first time we have met someone with her diagnosis and it truly gives us hope. Below is a picture of Grace and Joe after dinner.
I know many of you reading this may not be Christian or ascribe to religious beliefs, but the rest of this post describes part of our spiritual journey. Regardless of what you believe, I would challenge you to consider your life and what an amazing gift it is. When the threat of death seems so far off in the future it is easy to not think twice about the subject, but when the threat of death is all too real, how would you process it?
The most difficult part about seeing Grace go through this cancer is the emotional battle and combating the lack of control. Two things she said that were incredibly difficult for me to hear are, “I don’t want to die bald,” and “I’m scared you will remarry and forget about me”. Hearing this is so incredibly painful, and it is only magnified by looking at the data and wishing it were literally any other cancer. However, this lack of control strengthens our relationship and faith in God. Though it takes one gloomy thought of “you know other NUTs get recurrences and die, what makes you any different?” to make everything feel dark and impossible again. But the thing we are learning to do more and more reflexively to combat these toxic thoughts, our “shield of faith,” is gripping to the belief that she is healed through the blood of Jesus. The more we pray, the more we find peace.
When you step back, it’s amazing at how far God has delivered Grace from where she started, and we have clung every single day to faith that He will continue to deliver her. The prayers of SO many people are beginning to be answered. God has allowed this healing in Grace to happen despite the odds. Grace had every reason not to respond to chemo and immunotherapy because we were told most other patients stopped responding to chemo after 2 cycles and Grace didn’t have any PDL-receptor markers that would make her an optimal candidate for her immunotherapy. But Grace got through 6 cycles of chemo/immunotherapy, still showing improvement on the PET scans. Grace’s mom is still in awe, as she tells us that she word-for-word prayed that Grace’s scans would be disease-free by our last scan in December, and God answered this prayer. Seriously, how awesome is that? We are so thankful to God.
At this point, we feel like the Israelites when they were in between the Red Sea and Pharaoh’s army. They had just seen all of God’s power in freeing them from Egypt, but here comes the army that could kill them on the banks of the Red Sea before they even get to the promised land. They know that God has made a covenant with them to bring them to Canaan, but in their minds I’m sure they were thinking at that moment: “how can we get to Canaan if Pharaoh’s army kills us first?!” Likewise, there is every reason to be afraid in our own situation: The fear of recurrence can be paralyzing when doctors tell us of other NUT patients who had short-lived responses followed by rapid recurrences quickly ending in death. Recurrence is our Pharaoh’s army. But God is the great “I AM.” He is so great that His miracles surpass anything. We have faith, believe, and pray boldly that God will perform Grace’s version of splitting the Red Sea in that Grace will have no recurrence, and that she will be cured. We’ll never know whether it was the specific chemo combination, the immunotherapy, or Grace’s NUT-variant gene type that explains why Grace is in such a good place right now, but we believe that it is God’s power that ultimately explains this success at this moment.
David says in Psalm 6 “among the dead no one proclaims Your name” but that “the Lord has heard my cry for mercy” and “the Lord accepts my prayer.” This psalm has resonated with us for a long time, and we pray that Grace will not die an early death where she cannot proclaim God’s name, but we hope that she will be a testament of God’s power in overcoming the impossible and outliving this death-sentence for many many many more years. We keep praying for the fruition of this miracle, for no recurrence, for cure.
There is much to be thankful for this holiday season. Grace continues to improve on her current treatment plan. About two weeks ago on 11/13/18 and 11/14/18, Grace underwent another set of scans, which demonstrate significant improvement (see pictures below). Symptomatically, chemo weeks take a […]
This past weekend, my brother Aaron and sister-in-law Cerise came to visit. We have a running joke when taking photos that Aaron “photobombs” in the background doing a serious-Gollum squat or dancing the worm while everyone else poses normally. We had a great time binging on lobster rolls and pizza, it’s always amazing to see them.
Today Grace received her third cycle of chemotherapy. She is feeling well now, but the remainder of the week will likely be difficult once the pre-medications lose their effect. During chemotherapy, they give steroids and strong anti-nausea medications before giving the chemo drugs to prevent fatigue and nausea immediately, but the effects of these wear off by 3 days. She was feeling discouraged a couple weeks ago because every time she went in for a lab draw or to get an IV for the CT, she got poked a minimum of 3 times before they could get it successfully. To prevent blown and scarred veins that can happen as a result of this, many people opt to undergo a procedure to get a “port,” which is basically a semi-permanent big IV (it goes in one of the big veins in the neck) with a landing pad of sorts underneath the skin on the chest, so nurses can draw blood or give IV medications through a guaranteed successful IV. Grace opted not to get a port because the plan was to only do 4 cycles of chemotherapy after which she would transition to an oral immunotherapy. We are praying confidently that this is God’s plan.
Thankfully, today she had a great nurse who’s been doing this for more than 30 years, and she successfully got Grace’s IV and labs on the first shot. Grace thanked her and said that she had been praying all morning for a great nurse like her, and the nurse said she got chills and thanked Grace for bringing her such a great vein.
We are geared up for the week with plenty of broth, boost drinks, and medications should she need any. She has not needed any pain medications or cough suppressants in almost two weeks, which has been reassuring. She also finally reached her baseline weight tonight, which was a win! However, the chemotherapy has caused her cell counts to trend down (her lowest dip was last week, but today her new baseline is Hgb 11.1, WBC 3.6, ANC 1.9 and she is starting to lag in recovering back to normal as quickly as she did with the prior cycles). This may place her at a higher risk of being unable to fight an infection. We now need to be more careful when going out in public or having visitors. She didn’t get her flu shot yet due to the labs, so we have been reminding friends and family who come visit to rain-check if they’re feeling under the weather. Maybe this is overkill, but we’ve both seen the worst-case scenarios of cancer patients with uncontrolled infections in the hospital due to being immunosuppressed, so we just want to be as careful as possible.
We will see our City of Hope Oncologist next Friday, 10/19/18. After meeting with our UCI Oncologist today, we will likely continue through the 4th cycle of chemotherapy and then switch over to exclusively immunotherapy, which has a much better tolerated side effect profile than chemotherapy. If all goes well, Grace and I hope to get back to work as soon as her labs bounce back to normal and when her bones/lungs continue to show improvement.
One thing that we have learned from a very wise elder at church is the concept of “double fisted faith,” meaning that we come to God with one fist saying “I believe God will heal me and make a miracle out of me because I know God is all-powerful and is capable of this,” while the other fist says “And even if God doesn’t make things go in the way I prayed, I will still say He is great because there is a bigger plan that I can’t understand now.” For someone who doesn’t believe in God, I know this can seem like circular logic and there are a lot of arguments to be made on this concept. However, all logic (or lack thereof) aside, we have learned that faith can sometimes be inclusive of logic, but many times it is completely exclusive of it. Faith in a powerful God and Jesus Christ like ours is consuming… so consuming that when we cry out in anxiety and pain, there comes comfort that can’t be explained. I think that’s the key point, there is both pain and comfort in having faith, because one is pointless without the other.
I’m not going to sugar-coat things, Grace does have her low points and we have our dark days when we are angry, bitter, and cling to a “why me” mentality. We’re human, and whether you’re a Christian or not, we can all agree that we are all wired to be flawed and can’t be super strong and courageous all the time. Grace often says, “Thank God that I believe in God, because if I didn’t I’d be so angry and be lost in self-pity 24/7.” At least it’s more like 12/5 or 3/2 depending on the chemo week. Still human, still broken people in need of redemption every single day. And that’s what God has been delivering.
Thank you, Kyle for sharing with us a beautiful verse. I hope this verse speaks to you as much as it speaks to us.
Tuesday 10/2/18, Grace went for re-staging CT scans, which showed us what we were all hoping for. She is responding to the current treatment of chemotherapy/immunotherapy. There is a decrease in size of the left infrahilar mass and nodal metastases (see scans below). Additionally, the […]
The second cycle of chemotherapy was much more challenging than the first. She received the infusion 2 weeks ago on 9/17/18, and the following 4 days, she was dealing with fatigue, intermittent nausea and vomiting, no appetite, and pain in multiple locations for which she […]
Grace has done an excellent job maintaining her weight and has in fact gained about 3 pounds. Her appetite is getting better and the cough and shortness of breath have been improving since the first cycle of chemotherapy. She had intermittent blood tinged/rust colored sputum that started about a week after the first cycle of chemotherapy, but this has now resolved. We’re hoping the color of her sputum represents dead tumor, which helps Grace not feel so spent when she’s coughing it up. She used to get what we suspected myofascial pains by her ribs when she coughed; they would cause a significant amount of pain especially at night requiring pain meds to go back to sleep. She still has an intermittent productive cough throughout the day with clear sputum, but has not been needing any cough suppressants or pain medications. Thank you, God. She is much more energetic and we have been walking 2 miles at Crystal Cove beach daily (Find me on Strava if you would like to track her progress). We always go around sunset to (1) avoid harsh sunlight, and (2) to appreciate God’s majesty in the beautiful spectrum of sunset colors on the beach every night, from cotton candy pink to orange-purple ombre. I notice she gets wistful when she sees runners on the beach, because that was her not too long ago on her days off. She loves parking her car at the houses adjacent to Crystal Cove for the free street parking and running down to the beach. Thanks to our parents though, we now have the California State Parks Adventure Pass, so we can easily go straight to the Crystal Cove beach trails anytime. We’re trying to increase the mileage to build up her stamina, though I’m thoroughly convinced that she’s capable of doing her 5-mile Turtle Ridge-Bommer Canyon hike that she used to run from our place. Any volunteers on keeping her company for that hike?
Tracing back a few days, On Friday, 9/7/18 we met with our City of Hope oncologist to discuss a game plan, after he had spoken with his colleagues in Boston. We decided to continue our current chemotherapy/immunotherapy regimen with carboplatin/abraxane/pembrolizumab. Thus, cycle 2 will start 9/17/18 with the plan to obtain a PET-CT scan 2 weeks after to track response to chemotherapy and immunotherapy. Historically we have not seen NUT cases in the literature that use chemotherapy with immunotherapy and we are hoping for a positive result.
In the meantime, we are also planning for the future by preparing to enroll in clinical trials with targeted therapies. Two specific target agents that appear promising are bromodomain inhibitors (BET) and histone deacytelase inhibitors (HDAC). Today, we just arrived in Houston to visit MD Anderson for an additional medical oncology consult and possible enrollment in a phase 1 trial for a histone deacetylase (HDAC) and PI3K inhibitor. Thank you Shane and Pascale for the Houston hospitality and for letting us sample that crab enchilada (that set a new standard for us, and Grace will now be thoroughly disappointed with every Mexican restaurant we go to back home if they don’t have crab enchiladas).
In addition to searching for clinical trials, I have also been in contact with the NUT Midline Carcinoma NMC Registry Team. If you are interested to find more information regarding this disease, the NMC Registry is a great resource to start with. http://www.nmcregistry.org/index.html
Thank you to our family, friends, doctors, nurses, and everyone else we have encountered along the way. Your support has been overflowing and we are truly blessed. The magnitude of love, support, heartache, roller coaster lows and highs that we have experienced in this short past month has made us reflect on how much God is in control. At first, it doesn’t sound right typing that because you would think that a rare cancer diagnosis out of nowhere in a perfectly healthy and thriving 27-year old anesthesia resident is absurd and cruel. But how could the devotion of family flying in from across the country solely to emotionally support us and our family be cruel? How could unexpected, incredibly generous gifts from friends and work colleagues be absurd? Without pain and suffering, how can we experience such stratospheric examples of love and kindness? At the risk of sounding cliché, without bad, we can’t know what is good. God is grieved when His children suffer, just as He was grieved for Job (we’re working through that book currently). I don’t know why Grace is suffering now, but I can say that she’s going to be radically changed by this ordeal for the better. There is a purpose for this and for every bad thing that has happened in her, my, and your lives. Whatever belief you may have, I’m sure everyone has a story about something bad that happened to them that has illuminated itself to have been a catalyst for something beautiful to happen in their life at a later point.
In case you couldn’t tell, Grace may have jumped in and written the more eloquent parts of this post. It’s going to be a joint effort, like it’s always been. We’re a team, but more of a triad rather than a dyad. As one of Grace’s bosses so beautifully reminded us, a cord of three is not easily broken. This cord of three strands represents God, Grace, and me, and God will not fail us in our team effort to save Grace’s life on Earth.
Thank you all so much for reading this, sending all your uplifting comments, and for being the village that surrounds Grace to support her through this. We are so grateful.
“Finally, be strong in the Lord and in the strength of His might.”