My white count rebounded pretty quickly. I got three injections of a medication (I can’t remember what its called) while I was still in patient specifically for that purpose. I was advised I might have some bone pain because they were hard at work making white blood cells. It was basically in the normal range before I left. So I think…Read more

So recently I went through the TIL thing.  I’ve read a lot of notes about how the treatment is supposed to go, but there are very few actual accounts of someone going through it and what all the particulars are and what a patient can expect.

It starts with the resection of a tumor(s).  Mine were harvested from my neck.  There was…Read more

The rigors are something else, but demarol knocks them back. Should be getting another treatment this evening, two tomorrow, then one on Sunday. Then that’s it and we wait for my numbers to rebound before I go home.

I’ve been delayed a week. The TILs are still cooking. So now the admission date is July 1. More waiting…

Tim

The second of two drains came out this morning, as did the stitches that won’t dissolve on their own. So hopefully the pain will start to recede. Its okay during the day, but at night when all I want to do is sleep, it keeps me awake.

I’m getting my port put in on Wednesday, and my tentative admission date is Thursday. That is…Read more

Well, I made it through surgery. They tell me I was on the table for about 8 hours while they removed two big masses and shipped them off. Reportedly, they were 80% viable for expansion. So thats good news, and the first check box has been filled.

I spent the night in the hospital and was released Thursday morning. Recovering at home…Read more

Sounds like a good plan for your situation. Cut it all out and get rid of it!

It’ll be the first surgery of the day on the 9th. He said it may take up to 6 hours, and the folks from the trial will be there to collect tissue around noon- probably while I’m still on the table!

The goal of the surgery is twofold – to remove as much tumor…Read more

I have to admit to being terrified beyond the capacity for rational thought, as Egon said. The scans from the other day showing new growth in my liver over just the course of 3 weeks makes me…Read more

Bloodwork (8 tubes and a million separate tests), urine culture and an EKG, followed by the echo. A little later in the day I had another MRI of the brain and CT of the abdomen, chest and neck.

Next up is a meeting with the surgeon on June 1 so he can tell me exactly how gigantic the incision for a…Read more

My insurance (United) did cover it, though without saying so, it seemed like there were some behind the scenes things that went on between the hospital and the insurance company, I don’t think there was ever even a question that it was going to be covered.

However, at the beginning of this, the first oncologist I saw sent tissue from…Read more

I can’t say that what I’m feeling is excitement, especially after going over exactly how miserable its going to get for me for a little bit. But I want to keep pushing and moving forward, and I don’t want to lose any gains I may have made in the tumor burden department. I think that while the scans weren’t…Read more

So it was a whirlwind couple of days.  I wouldn’t hesitate to tell anyone to be treated by Dr Sullivan or Dr Postow.

Both recommended doing TILs.  Dr Sullivan said that if it was a horse race, TILs would be body lengths ahead of the other current options. Dr Postow said that he didn’t want to sugarcoat how difficult the treatment c…Read more

The TIL trial at Smilow is indeed through Iovance, and they were able to get me a spot. Tentative date for surgery to harvest tissue is 6/3, and between now and then I’ll need to sign the consent, have an EKG, more bloodwork and I think another set of scans, unless they can do some wheeling and…Read more

So after a day of being on the phone, I have an…Read more

Its been a while since I’ve posted, I decided to start a new thread for this one, because of the (hopefully) new turn my treatment is taking. I’ve been on nivo/braftovi & mektovi since September 2020. My last scans in February showed mostly stable disease with a couple spots of very small growth.

I had new scans on Tuesday and my follow…Read more

I’ll let you know my experience so far, but I’ll also be watching the replies, because I’m interested as well.

I got the 4 ipi/nivo starting in March 2020, then switched to just nivo after.  I had an initial response but then progressed, so I started Braftovi/Mektovi in September 2020, while also getting nivo once a month.

All things…Read more

I’m sure Ed or Bubbles will be along to provide you with actual data, but yes, re-challenging with ipi/nivo after progression on nivo alone is a thing, especially after lowering tumor burden with targeted therapy.

Tim

Thanks for the kind words! It’s always encouraging to hear good things about Dr Sznol! It always makes me smile when I’m Dr Googling something and come across him as a trusted voice in the community, speaking about the latest and greatest thing.

I’m very happy that he’s taken such good care of you! My aunt is also under his care – he…Read more

I’ll try to do a quick synopsis of how I came to be where I am. When I was diagnosed in February 2020, the disease was all on my left side, and all in my lymph nodes, though it was extensive. I Initially saw an oncologist who staged me as 3/4, because it hadn’t spread to anything but my lymph nodes, and just on the left side.  Nothing…Read more

Thanks for following along! It’s very helpful to me to be able to identify some commonality between myself and a fellow melanoma warrior that is having some amount of success, so I hope I can provide some of that to others!

The official debrief on Thursday when I had my nivo infusion was “98% good news, 2% stable”. So I’ll take that. …Read more

I had new scans on Thursday, with mostly good news.

Brain MRI is negative.

Abdominal CT: “Stable subcentimeter nonspecific hepatic hypodensities. A few prominent but not pathologically enlarged lymph nodes in the periaortic chains are unchanged. No lymphadenopathy.”

Chest CT: “Except for a left subpectoral lymph node which has…Read more

It is soft-ish, it doesn’t really feel like the other areas of disease I can feel in my neck.  Behind the knee would be a very strange spot indeed for a met to show up, so I was able to talk myself off the ledge a little bit last night. All signs point to this not being a met and being just another side effect (feels like I could write…Read more

Last night I noticed a large lump behind my right knee.  After the initial freak out, I did some internet sleuthing and see that it may very well be a Baker’s cyst – something that develops if arthritis exists in the knee, and too much fluid is produced. It collects into a cyst. Has anyone experienced this?  Arthralgia is something I…Read more

Positive for the V600E mutation means that you are indeed ‘BRAF positive’ and so you have the option of targeted therapy in your back pocket if you choose to go that route.

Totally understand about not doing ipi the first time around.  As Ed noted in his other thread, it has the potential to be very toxic, more so than the…Read more

I was diagnosed in February 2020, also stage 4 with disease in my lymph nodes.  I was started on ipi/nivo, had the 4 courses and also seemed to have a great initial response, though I stopped responding over the summer.  I’m BRAF +, so I started Braftovi/Mektovi first week of September, while continuing on nivo.

At the b…Read more

Thanks so much for the kind words.  I realized over the weekend that I never posted about my scans!

I had CT scans in November, a couple months after starting the targeted meds.  Everything had shrunk considerably or was stable.  There were some very small and questionable spots on my liver and lungs, and they hadn’t changed.  The dis…Read more

It occurred to me this morning that I haven’t updated this thread in a while, so I thought I should.

The first thing, and most important, is that I’m still here!

The GI bleed never came back, and the arthritis hasn’t really been an issue.  Sometimes an odd joint will be creaky (the middle finger on my right hand, for example, perhaps…Read more