Hello friends and family,

No news over the past year has been good news, but we have some updates to share now. Jeff had brain surgery this past Monday. He has been coming back to NYC every 6 weeks for scans, and until a couple of weeks ago all the feedback we got was that he had responded well to the TIL. There was one spot in his brain they were tracking closely, but it is basically impossible to know based on an MRI what is showing up. At the last appointment in January, they were convinced it was treatment-related, and we thought we were in the clear and celebrated one year after TIL. Then this month they changed their minds and said that based on a detailed scan it was suspicious enough that they wanted to do surgery to remove it. Surgery is the first line of defense when something regrows in the same spot. Things moved very quickly after they made the recommendation. Jeff had an online consult with the neurosurgeon last Tuesday, and he offered us either a Friday same week or Monday time slot for surgery. We took the Monday spot and headed to New York Sunday night.

During the consultation the surgeon also offered to enroll Jeff in another clinical trial for brachytherapy. It’s a blinded trial with 50% of people enrolled receiving radioactive seeds in the cavity of their brain after surgery. They confirm the presence of active melanoma by pathology while the patient is still under anesthesia, and once confirmed they place these little seeds inside and close it back up. It delivers a very localized and small dose of radiation exactly where it needs to go, and is more targeted than doing another round of radiation externally later if it does regrow. The odds of something regrowing again after surgery are about 50/50 without any further treatment. With these seeds placed, that reduces to a 10% chance they regrow in the same spot. Jeff signed up knowing he might be in the half of people who are just tracked and get no little seeds, and also with uncertainty about whether what they would remove would even be melanoma.

During surgery they removed the spot and confirmed it was melanoma. Fortunately, Jeff was selected as part of the cohort to receive the brachytherapy, so they placed the little seeds inside. He was in surgery for about 3 hours and in the hospital for about 24 hours. They released him yesterday and he is doing great so far. It is amazing what they can do with such a quick turnaround, and how resilient the human body is. We went on a nice long walk around the upper east side this morning and grabbed a coffee, and we are looking forward to getting home to our kids tomorrow morning. While Jeff has some restrictions around lifting and driving for a couple of weeks, and is limited in strenuous exercise for a couple weeks after that, the doctors made it sound like he would be back to normal very quickly. He will have a pretty cool 4 inch scar on the back of his head, and can brag that he is radioactive for a couple of months until the radiation wanes, so as hero origin stories go this is a pretty decent one.

We hope that the TIL is still working everywhere else and that this will be the final step in keeping Jeff cancer-free, but don’t know what the future will bring. We will try to update here if we have any other news. Thanks for your love and support.

A&J

I visited New York again last week to get updated scans and check in with the trial oncologist. Prior to the visit I was hopeful that the TIL treatment was continuing to do its magic, and that I would continue to see regression of the melanoma. Luckily this was the case – the scans showed the brain tumors continued to get smaller, and the rest of my body was cancer free. My oncologist is very excited about my results. The trial only has space for 10 people, and I was the first to receive treatment. Unfortunately the second person didn’t respond to the treatment at all.

While I continue to be free from the Melanoma side effects, my immune system is still out of whack – I continue to take antibiotics and antivirals. Also, my hair has turned completely white, which is a rare but encouraging sign in melanoma immunotherapy (and a source of amusement for Oryn and Eloise). I’ll need to visit New York again at the end of May and early July. After that, if things continue to get better, I’ll only need to go every 3 months.

I don’t have much else to report. Once again, thanks for your support!

We are a little overdue for an update, but it has been nice to just do regular life for a couple of weeks. Since Jeff got cleared to come home a couple of days early, we have enjoyed being back home together with the kids. This past week Jeff went back to MSK for his 6-week post-TIL scans. We weren’t sure what to expect but given our long odds (about 30%) we were both anxious leading up to it.

We were very glad to see on the latest scans that Jeff has had responded to the TIL treatment. The tumors in his body and his brain have shrunk slightly, and there is a lot less swelling in his brain than a few weeks ago. The blood from the hemorrhage has also started to dissipate. We are of course relieved and pleased with this news and wanted to share it with our community, who have been so supportive throughout this process. However, we think that celebrating now may be premature, given how early it is and how much whiplash we’ve had over the past year.

Jeff goes back for more scans in 6 weeks to see if the response continues. Since this is a very new treatment, we do not have any idea what will happen, and he very well may need further treatment (radiation, or something else). Jeff has had a response to immunotherapy before that only lasted a few months. We are cautiously optimistic but will still be waiting a bit longer before we breathe a sigh of relief.

Jeff is still recovering from the treatment and continues to have some vision impairment and fatigue, so hopefully by the next scans a lot of that will have improved, and then we can truly celebrate. Until then – we are glad we have crossed this first hurdle, it’s better than we expected, and we appreciate your continued prayers for this to be durable.

Love,

Arianna and Jeff

Thanks to Arianna for keeping this blog up and running while I was feeling bad in the hospital, and announcing my escape last week. She stayed with me until Thursday, when Greg arrived. For three days Greg and I walked all over the borough, and even into Brooklyn. I feel energized by the ability to move freely and am thankful for the great weather we’ve had. Even my vision and hearing seem to be improving, if only slightly.

My mom and dad have been with be since Greg’s departure on Monday and we are having a good time getting outside to explore. I had the follow-up appointment on Tuesday with the radiation oncologist to discuss the way forward. He told me that they will redo a brain MRI and a brain PET in 3-4 weeks, so long as I continue to have zero neurological symptoms. He said that this will allow the hemorrhage to calm down and will give all parties a sense of what we are actually dealing with (TIL mediated swelling, and a treatment success story or an active melanoma that has resisted treatment and still needs radiation or surgery). I feel fortunate to not need treatment NOW and to have remaining hope that the TIL’s are working.

I’ll be heading back to DC on the 26th, absent any new activity. I’m looking forward to seeing Arianna, Oryn, Eloise and Truman again 🙂

Hello from outside the hospital! Jeff got a standing ovation from the nurses and attending doctors on his way out of yesterday, which was very moving. We got lucky with a sunny and 50-degree day that allowed us to enjoy an afternoon coffee/tea at a park and sit outside to eat lunch facing the East River. Jeff is feeling pretty good and is continuing to improve, and the headache has stayed away for the last couple of days. Sleeping in a real bed, flat, without lights on and people coming in 3 times each night to take his vitals was pretty glorious in and of itself. Don’t underestimate the little things in helping him heal.

The next big update will probably be after next Tuesday. Jeff is going in to see the radiation oncology team then to discuss whether to do radiation on the brain tumor, or have surgery to remove it, or to do nothing and continue waiting. They have not yet scheduled the MRI that will help them make this determination but will do a consult on Tuesday and see how he feels at that time. Unless something changes, we will probably be quiet here until then.

Jeff’s brother Greg arrived in New York today and is staying with him for the next few days. I am on my way back to DC to see our kids. Jeff is required to stay in New York until February 27 and has to have someone stay with him that entire time. We got lucky and they are housing him in a hotel with a room that has enough space for him and his companion and a little kitchen. Hoping for a few days with nothing to share because Jeff continues to feel good.

Love,

Arianna

Tomorrow is discharge day! Jeff finally gets to leave the hospital and breathe fresh air again. He’s very excited to have some freedom, but he will be limited in what he can safely do while his body and immune system continue to recover from the last three-week onslaught. The best news today is that the headache that has been bothering him off and on for over a week now is gone today. He was also disconnected from the IV tower he has had to wheel around with him everywhere, which has been a good feeling.

He said it is hard to tell, but he thinks there might be a slight improvement in his vision. We do expect it to get better over the next couple of weeks based on what the eye doctor said. Yesterday the ENT doctor came and explained the different types of hearing loss to us and read the report of an audiology test they conducted for Jeff. They were able to clean out his ears and improve at least one aspect of his hearing, but the nerve-related hearing loss they can’t say for certain if or when it will return. They said they are hopeful it will, so we are keeping our fingers crossed both his vision and hearing continue to improve.

Jeff also had a repeat MRI last night due to the headache he’s had. The radiology report that came back this morning sounded very scary. I rushed back to the hospital at 7am because the report said his lesion was bleeding again and had grown significantly. However today after speaking with the neurology team, the neurosurgery team, and the radiation oncology team (so many doctors…) they said there is no immediate action needed since Jeff is feeling ok and responding perfectly to all the neurological tests they’ve done. Since this is a new therapy and there is no data (Jeff is literally the first person on this trial with active brain disease) they don’t know if the swelling and increased size is just the treatment working, or if it is true progression. They will repeat another MRI with better detail in a couple of days, and have started potentially planning for targeted radiation therapy as soon as next week.

We walked a solid 2 miles on our hamster wheel around the floor today and Jeff is going to enjoy his last room service meal and get the heck out of here tomorrow. On the whole he is feeling much better. We are staying hopeful and positive despite our scare this morning.

Love,

Arianna

Jeff is feeling relatively good today, except that he still has bothersome hearing and vision loss, and a headache that comes and goes. Because they don’t really know what is causing them it’s hard to treat or give an estimate of when they will get better. His blood work is all continuing to improve, and we are hoping that tomorrow they will start phasing out some of the many supportive drugs he’s been on and give an estimate of when he can leave the hospital.

It is difficult to be limited to one floor indoors of a hospital with no fresh air and only one visitor per day other than the nurses and doctors. It’s also hard to be woken up to have your vitals taken around the clock. We are quickly rounding the corner on three weeks on the 7^th floor of MSK. We are both ready for a change in scenery. Send us good vibes for an end to the hospital stay sooner rather than later.

Love,

Arianna

Just here to share a few positive things. First, Jeff did over a mile in laps today. Major improvement! Second, he actually felt hungry for the first time in two weeks. Third, a couple of markers in his lab work are looking up: white blood cells are detectable again, platelets hit 31, and liver markers (which were temporarily concerning) had a good day. Hoping for more good news tomorrow, and a good night of sleep for Jeff. He’s still very tired and has had a headache persistently, so they did a repeat head CT which showed no change. He has swelling around the brain tumor, which is probably causing the headache. He also has had some vision changes and can’t see very well, which is really annoying because he can’t read or watch TV (if he hasn’t responded to you, this is why). So we are listening to podcasts when he is up to it. He also has had some changes in hearing. So unfortunately, not all good news. But hoping for a bit more improvement tomorrow.

Love,

Arianna

Jeff has had a couple more rough nights. Despite skipping the last IL-2 dose on Monday night, Jeff’s blood pressure dropped, he had a persistent high fever, and his heart rate was too high when they checked his vital signs routinely at 9pm that night. This set off an automatic septic shock alert. He spent all of Monday night into Tuesday morning getting his vitals checked every hour, with several additional IVs of fluids to try to regulate his blood pressure, and a chest X-ray to rule out any fluid in his lungs in the middle of the night. They had to add a fifth line to run all the IV bags; he’s got wires and tubes everywhere. He very narrowly escaped going to the ICU due to his blood pressure staying so low most of the night.

The fever broke midday Tuesday, but it came back again. Tuesday night Jeff developed a headache, and along with the fever returning they sent him for a head CT to rule out another brain hemorrhage around 4am. He was again up all night with constant checks from the nurses, more IV bags being changed or added, and neurological checks to make sure he wasn’t showing signs of an emergency.

Today he spent mostly in the dark, exhausted.

The good news: his platelets are starting to slowly tick up. We’ve passed the all-important 20 mark and hope to keep going up from here. Other bloodwork seems to be as expected. A full chest CT and cultures they’ve been doing daily have not detected any infections, which they were worried about due to the fevers. He managed to do about 4 laps around the floor today and eat a peanut butter sandwich, which doesn’t sound like much but trust me when I say it was truly heroic.

Hoping to have better news to share next time.

Love to you all,

Arianna

Jeff is done with his last treatment dose. He has powered through the last three days like an absolute champion, despite feeling like garbage. It will take a few days before he feels better, and even longer before they let him leave the hospital, but every day past the chemo and IL-2 he should improve and his platelets will hopefully start to go back up. In the end, he skipped a dose last night, and the last dose today, for a total of 4 IL-2 infusions.

He’s had a fever most of the last three days and that was the decider tonight on the last dose. He’s maxed out how much Tylenol they can give him, and they won’t give him anything else because he’s at such high risk for another brain bleed at the moment. Other people on this treatment get other supportive medications for the fevers and side effects, but Jeff has had to just suffer through it because they won’t risk giving him anything else.

It’s really tough to watch it, and I know it has been awful to live it. I’m proud of how strong he has been. Here’s hoping it’s all up from here.

Love,

Arianna

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

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