Jeff is now 3 doses, or halfway, through the dreaded Interleukin 2 (IL-2). It has made him feel terrible. We expected this, but it is still difficult to go through. According to the doctors and nurses he is actually doing better than most patients do on this drug, so despite the chills and fever he is experiencing they are continuing to give him the next dose each 12 hours. They are also giving him platelets this morning because his level has dropped down to the “danger zone” of under 50, where it is more common to experience spontaneous hemorrhage. The platelet infusion will temporarily raise his levels, and they will test again tomorrow, and he will get platelets each day until his levels go back up on their own.  That could take a few days, or a couple of weeks. Until then we are treading on thin ice hoping his brain does not bleed again and watching every symptom for signs of another hemorrhage.

This part is why they call it “battling cancer”. We are hoping this is all worth it. Send up some prayers for us.

Love,

Arianna

After several days of recovery, I’m about 95% improved from where I was this past weekend. The last 5% deficit may be because I can’t leave this floor, and the edges are rounded off by the endless amount of “preparatory” Tylenol they have me on. At least I have a view!

I received my “TIL” cells today, which is celebratory in its own way. It was exactly the way you would imagine it: a resident outside my room thawing 4 bags of milky-yellow fluid, and a room full of nurses counting each bag as they went. Uneventful like I’d hoped.

Now we start tomorrow on the dreaded IL-2 which, leading up to this, I had always been told was the toughest part. Up to six doses over three days of immuno-molotov-cocktail. Good thing there was recent data released that told me we wouldn’t sacrifice efficacy if we skipped doses. I’ve nervous about how I’ll react. I’ve been immuno-reactive since my original doses of immunotherapy in 2020, even laid up for 3 days because of the covid vaccine.

But we shall see! Look for a post from me or Arianna over the next two days to give an update.

Love you all

Jeff

Dear friends and family,

Today was mostly unremarkable, which is not normally newsworthy but given the last update a boring day is a very good thing. Jeff is improving and his speech is much better. We met the new principal investigator, which is the doctor who is running the trial (it has changed; the previous doctor took another job). Jeff liked both of them, but for what it is worth, I like this doctor better. Other doctors like the neurosurgeon and radiation oncologist can weigh in on recommendations, but he has ultimate say on what happens with the TIL.

Jeff received the chemotherapy much earlier in the day today than past days, so there was less waiting around. Jeff walked more than a mile in laps around the floor and ate well today, and seems to be tolerating the chemo pretty well now. He said today was a day like what he had expected.

Two other updates that are hopefully positive. 1) they reduced the steroid that Jeff is on for brain swelling because he is doing better. As long as he continues to do well, they are reducing it again tomorrow with the goal of being off it entirely by Thursday, so that when they administer the TIL infusion on Friday it is mostly out of his system and won’t reduce efficacy. 2) Jeff was tested for seizures this morning, which is another risk of this trial, and did not have any.

I hope that all of our updates from now on are as boring as laps around the floor and three full meals.

Sending love,

Arianna

PS I appreciate all the calls, texts and emails but am a bit overwhelmed and it is difficult for me to respond to everyone, and to respond thoughtfully. Your well wishes, prayers and offers of help are welcome and kind, and I am sure we will take you up on the help someday soon. For updates on Jeff I will continue to post here, even when it is a no-news-is-good-news type situation. Posting is easier than trying to repeat the same information via text many different times. If I have not responded, know that I have seen it and am grateful for your support, and will post something regularly so you can stay up to date. Thank you for your understanding.

Dear friends and family,

We arrived in New York on Wednesday afternoon and had a night to settle in and get Jeff’s COVID test, and then came back Thursday for a surgical procedure to place his Hickman catheter. He was checked into the hospital starting Thursday night. We learned both on Thursday waiting for the surgery and then again on Friday waiting for his first dose of chemotherapy that things always take longer in the hospital than you think they will, which Jeff is very good natured about while I am a bit more impatient. Jeff got his first dose of cyclophosphamide at the end of the day on Friday, which he would receive over the first two days. He woke up Saturday morning with a horrible headache and severe nausea. They treated those and he fell asleep, and I came to his room around 9am. We spent the entire day waiting for the doctors to figure out the problem so we could treat it while Jeff slept. After chasing the tail of a possible sodium deficiency for 5 hours they promised to get him some salt tabs which took another 5 hours to actually get to him. Because Jeff was very lethargic and had increasing brain fog, even as the headache and nausea subsided, they sent him for a head CT on Saturday at 7pm to rule out a brain hemorrhage.

Unfortunately, the CT showed that the lesion in his brain that we are tracking and trying to treat with TIL had started bleeding, and it was causing potentially fatal swelling in his brain. They called me back to the hospital and I spoke to the neurosurgeon, who said that they were starting him on high dose steroids to get the swelling down, and that we would repeat a scan at 1:30am to see if it was still bleeding. If so, Jeff would go immediately into surgery to remove the entire lesion and the bleed and reduce the pressure in his skull. If it was stable, we would decide next steps at that time. I stayed in his room (Jeff could respond to the physical neurological tests but not answer questions) and also talked to the attending physician, brain radiologist, and several nurses throughout the night as they monitored his vital signs for any worsening. They put him on oxygen when it dipped around 3am. The CT was performed around 2:30am and then the results came in around 3:30am, and it thankfully showed the bleed was stable.

The neurosurgeon did not return until nearly 9am Sunday morning when I had stepped out to take a quick nap, so he talked to Jeff and told him we were going to get an MRI to get a more precise picture of what was going on. We were worried that due to several complicating factors we would be told we could not continue with the treatment protocol. After several more conversations, the trial doctor called us and told us they had decided we could continue, for which we are very relieved. The MRI he got tonight showed the bleed is still stable, so we continued to day three of chemotherapy today with a dose of fludarabine, which he will receive for 5 days.

There is a possibility that the steroids that Jeff is on now could lessen how effective the TIL treatment is, but they don’t know for sure and won’t know until we do it. There are also risks to lowering his platelets while he has this unstable lesion that has already bled. However, there is not a possibility to delay and restart this later; it is either we do this now under our current set of conditions, or we don’t do it, and this is Jeff’s best treatment option, so we are moving forward.

It was a very challenging couple of days. Jeff is recovering slowly, and was able to get up, eat, and speak to us today. He is still having trouble forming his thoughts. He says he can think of what he wants to say but it is very hard to get the words out. If you want to reach out to him, you can do so, he is probably best at responding to texts rather than calls at the moment.

Thanks for the love and support.

Arianna

Hello everyone! Below is an update for those interested in some of the details of my melanoma trial.

After a long wait and much preparation, tomorrow Arianna and I will be heading up to the Memorial Sloan Kettering hospital in Manhattan (1275 York Avenue). I’ll be admitted to the hospital on the 19th, and will be in the hospital for at least three weeks, and then in a nearby apartment for an additional 15 days or so.

As you may remember from the last post, this treatment is very involved. I traveled to NY for several screening appointments, had surgery in December, and then waited patiently for the treatment to be prepared from the resected tumors. Starting on the 20th, I’ll receive low dose chemotherapy for 7 days. They assured me that side effects from this should be limited to fatigue. On the 8th day I’ll get the “treatment” of billions of TIL cells (called “Lifileucel”). I’ve been told that most people do not have any specific reaction from the cells alone. For the next three days I”ll receive IL-2 twice daily. IL-2 is a pro-inflammatory cytokine which will push my immune system into overdrive in an attempt to “activate” the TILs. I am likely to have flu-like side effects from this, and I’ll be monitored closely. A dose may be skipped if my reaction is severe. Once I complete the IL-2 I’ll recover in the hospital for the next 10 days. From (approximately) February 11-27th I’ll remain nearby in an MSK apartment to continue to be monitored closely, after which I’ll return home to DC. Two weeks after this I’ll return to NY for my first post-treatment evaluation, where we will hopefully see positive results!

Arianna will be with me in New York until I am recovered from the IL-2, when she will come back to DC to be with the kids (hopefully the front end of the first week of February). We are lucky to have grandparents to care for, and help care for, the kids while I am gone. Thanks to DC friends for offers to help with our handfuls while we are gone.

For those interested in visiting (welcome but not requested!!), the best time to come will be when I am out of the hospital, as my hospital floor will have a lot of immunocompromised patients. As mentioned above, this will be approximately February 11-27th, and I’ll be on the East Side, somewhere around 75th. Arianna or I will continue to write updates as we go along.

Thank you all for your support. We love you!!

Jeff

Family and Friends – it has been almost three years since we’ve sent out any formal information on my struggle with melanoma. 

As discussed in earlier posts, in 2019 I was diagnosed with Stage 3, and was starting immunotherapy. During 2020 and most of 2021 I had a fairly long and wonderful period of time being “all-clear”. During this time I started a new job, we moved from our condo into an actual house in DC, we bought a minivan, and Eloise was born. Things were pretty awesome!!

Despite all of the great things happening in our lives, late last year I developed a small melanoma progression in my lung and lymph nodes. I completed another round of immunotherapy this past spring – this time a combination of two different drugs. The immunotherapy did not immediately work, and suddenly I had two brain metastases which were quickly treated with targeted radiosurgery. This type of radiosurgery is highly effective at resolving treated tumors, but it unfortunately is not a preventative treatment. 

In a sudden change of circumstances, the immunotherapy that I had stopped taking months before started to work, and my lung and lymph nodes started to clear up. I developed weird immune-mediated side effects that were bothersome, but were also great signs that the treatment was working. I had finally responded to treatment, and was eager to put this nightmare behind me.

Unfortunately, in early November I developed another brain metastasis, and several more in relatively low risk areas of my body (i.e. no major organs are involved). My Johns Hopkins team quickly referred me to Memorial Sloan Kettering (MSK), where I enrolled in this clinical trial. I just returned from New York, where I had the surgery required to create my treatment. The type of treatment that I’ll be receiving is called  “TIL” therapy. See this recent news report, which explains how the treatment works and provides some recent data on efficacy. I’ll receive treatment sometime in January, and will be in the hospital in New York City for about 3 weeks, and then nearby for an additional two to three weeks for monitoring.

I feel very fortunate to be on this trial. They are only admitting 10 people, and it was just approved the day after Thanksgiving. Based on the published results, and discussions with my Doctors, there is a decent chance I’ll have a curative result, with minimal risk of long-term side effects. At minimum, this treatment could help my immune system respond to subsequent treatments. 

Over the past several years, we have not kept up formal communication about this directly with friends and family, primarily because it seemed like things were constantly changing. Treatments available for melanoma patients like me are evolving and improving all of the time. The FDA approved a new immunotherapy last year, which I have not yet tried (Opdualag) and there are many newer phase 1 clinical trials that are evaluating different ways to harness the immune system to fight the cancer, including adoptive t-cell therapies, vaccines, improved immunotherapies, and targeted therapies that work against specific genetic mutations. All of this makes me hopeful that I’ll continue to have a lot of treatment options, even if this clinical trial isn’t the home run that I hope it to be. 

Arianna and I appreciate, so much, our friends and family for being there for us when needed, especially over the past 6 months. Even though things have been chaotic lately, we remain hopeful for the future. 

Love to you all

Jeff and Arianna

Last week Jeff visited three oncologists at different institutions in order to get multiple opinions on treatments. Based on these meetings, two out of three doctors recommend starting immunotherapy due to a 30% risk of recurrence, while the other recommended monitoring with scans and frequent blood/skin checks.

Our decision on whether to use immunotherapy had to be balanced by considering side effects, which have the potential of being significant and, in infrequent cases, permanent. So with immunotherapy instead of a 30% chance of the melanoma returning, he would have a 15% chance of recurrence and a 15% chance of serious side effects – about even. The oncologist at Georgetown recommended monitoring, primarily because he weighed the risk of side effects more heavily than the potential for benefit (I have a 70% chance of being completely cured without any future treatment, however if the cancer returns it will likely be harder to treat at that point and could be a distant metastasis).

After meeting with these three oncologists (Georgetown, Johns Hopkins, and Inova) and dermatologist that specializes in melanoma (Inova) we weighed the potential risks and benefits and decided to move forward with immunotherapy treatment with Dr. Lipson at Johns Hopkins (which partners with Sibley in DC, so we do not have to drive all the way to Baltimore for every appointment). This decision was difficult, but we feel it will give us the best chance of preventing any potential recurrence.

Jeff had a follow up appointment with Dr. Lipson today and expects to start treatment on February 27. He will be taking Opdivo, which is given intravenously every four weeks, and is a PD-1/PD-L1 inhibitors. These types of drugs “supercharge” the immune system, and help the existing T-cells better recognize and attack cancer cells. Jeff plans to tolerate treatment well (fingers crossed!) and will continue for one year or until the treatment becomes too toxic.

Hello Friends and Family,

On December 4, 2019 (his 37th birthday) Jeff was diagnosed with melanoma skin cancer after a visit to the dermatologist for an irregular mole. On December 20 he had surgery to excise the melanoma and area around it, and remove the sentinel lymph nodes. Surgery went well and as of January 13, Jeff had his stitches out and can soon resume normal activity. The surgeon removed eight lymph nodes and sent them for pathology. Of the eight, two were found to have microscopic melanoma deposits contained within the lymph node. Following that pathology, Jeff was sent for a CT scan to ensure the melanoma had not moved further than the lymph nodes. A CT on January 3, 2020 was deemed clear by Jeff’s team. After the surgery he is considered NED (no evidence of disease), and staged at Stage IIIA.

His stage (IIIA) is a grey area for oncology in terms of how to proceed; some doctors recommend doing nothing more, some recommend further treatment. On January 13, 2020 Jeff and Arianna met with an oncologist at the Lombardi Cancer Center at Georgetown Hospital to discuss what they call adjuvant therapy, which is treatment to reduce the risk of recurrence. The treatments for melanoma have drastically changed in the last 10 years with the first line of treatment being immunotherapy and gene therapy since melanomas are resistant to radiation and chemotherapy alone. The oncologist we met does not recommend immunotherapy for Jeff given a decent chance for potential long term side effects (17%), and the relatively low risk of recurrence (20%), as well as potential complications with another immunosuppressive drug Jeff has been on for psoriasis. They are now running a test to see if his melanoma contains the BRAF (pronounced bee-raf) gene mutation to determine if he is eligible for gene therapy, which is what the doctor at Lombardi recommends if he is eligible. We should have those results in a week or two.

After consulting again with his dermatologist, Jeff decided to get a second opinion and is planning to make an appointment at Johns Hopkins to see if another oncologist agrees with the approach of avoiding immunotherapy for now. Jeff and Arianna are also doing some research to make an informed decision about potential adjuvant therapies (risks and benefits) and what Jeff will move forward with. The oncologist says a decision needs to be made and treatment started within 12 weeks of the sentinel lymph biopsy, so by February 28. Alternative to adjuvant therapy Jeff would go back for scans and close observation every 3 months and we would cross our fingers the melanoma does not recur.

If you have any questions you can email us directly jcr204@gmail.com or arianna.nagle@gmail.com. We appreciate your support during this difficult time.

Much love,

Jeff & Arianna