When the triplet fails…

So after a day of being on the phone, I have an appointment on Monday at 5 to see Dr Ryan Sullivan and Tuesday morning at 11am I have an appointment to see Dr Postow. I believe all the releases are in order and I have my scans on CD now – it blows my mind that the images themselves can’t be transmitted digitally, that the industry standard is burning them onto CDs.  Sheesh.

Its totally overwhelming to be shoehorning these appointments in Boston and Manhattan into two days, but I’m glad that its being done quickly. Suddenly, time is of the essence and I’ll be happy to know what direction I’m going in by mid week and not wasting time.

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 dealing.  Scans need to be within 28 days of the surgery, apparently, so my scans from the 4th probably won’t be recent enough.

I let her know what was going on with MGH and MSK. She said that if I decide to go with something there, we can just cancel my spot here, no harm no foul. She was also very pleased to hear about how quickly both places were getting me in to be seen.

Jenn, I’m sorry you had such a bad reaction to the Braftovi & Mektovi. From what I understand, the standard dosing is so many pills so that they can reduce the dose if necessary, or fine tune it. I’m starting to deal with more side effects now than when I started (the nausea has started affecting my appetite) so I definitely know where you’re coming from. Hopefully they can find the right combo/dosage for you that can be tolerated AND effective.

John, you’re absolutely right.  I may very well end up doing TILs at Smilow after seeing what MGH and MSK have to offer – Dr Sznol is good at mentioning things that should be blatantly obvious but that are harder to see through the fog of stress & grief. In regards to the TILs, he said that he’s treating someone who didn’t have a complete response to it, but that it made his disease more or less stable, which gave him lots more time to try something else. I really think that is the way we’ll end up ‘beating’ melanoma.  There doesn’t seem to be a one size fits all treatment, but perhaps the 30% durable response rate for ipi/nivo is OK, because there are so many other options to try, after that.  There has to be some combination that works, right?

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 could be, but he thought I would be fine. They both mentioned that they thought this was going to be approved by the FDA in the very near future and would become a standard of care option.

Dr Postow also had  a couple other tidbits that I found interesting.  He was aware of only 25 or 26 spots currently open in the US, and that there were zero just a few months ago.  And MSK has only treated two patients with this therapy, one of which is having what he believes to be a durable response. I guess I would have assumed that such a big cancer center would have treated more than that.

So, TILs it is, after I went 3 for 3 with opinions. I have an appointment tomorrow with Dr Sznol and the research team to go over specifics and sign paperwork, and then a tentative date of 6/3 to harvest tumor tissue. Then its off to the lab to grow some TILs.

I’m both scared and excited. Glad to have another potentially curative option available to try right here in my backyard.

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 terrible, they did show that the targeted therapy has most likely lost its efficacy and we’re now moving in the wrong direction again.  For as quickly as the consults and appointments have gone, I realistically won’t be admitted until the end of June, so no TILs until the beginning of July, which seems like a really long time to be letting the disease continue to grow.

As for yesterday’s appointment – I met with the research nurse to sign the consent (so now its official), one last atta boy from Dr Sznol, and a meeting with the surgical assistant, who let me know that they’d be making an incision starting behind my ear, in a hockey stick shape, down to my shoulder, and removing all the disease they can while they have me open. Part of me is terrified by the thought of that size of an incision, but I’m also a bit comforted by the fact that they’ll be removing tissue that may be starting to cause a problem in a month, if it continues to grow. So I’m trying not to worry too much about the timeline. Also, I need more bloodwork, an EKG, an echo, more scans and to have a port installed between now and then anyway.

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 modified radical neck dissection is going to be…

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 wonder where I’ll be at by the end of the month when I get admitted to start the trial.  Will I make it? I hate those thoughts, but they’re hard to push out of my mind. The debulking surgery will go a long way towards alleviating pain I’ve started having in my neck and shoulder, but it won’t make a difference for anything growing elsewhere.

I am indeed still on the targeted meds. Dr Sznol thinks that they may still be having an effect as far as slowing progression.  I guess that’s not something you can really prove one way or the other, but no real reason to stop taking them now, if its only for another 4 weeks.

So if you have no tumor burden, are they removing the lymph nodes pre-emptively?

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 tissue as they can to make the TILs from, as well as to make me more comfortable and give me a little more rope to work with until I get admitted.  A typical radical neck dissection takes all the tissue, wholesale, from that side of your neck.  Including things like the facial nerve, all the lymph nodes, jugular vein, etc. My surgery will be a modified radial neck dissection, meaning that he’s concentrating on tumor tissue and will try to preserve those structures as best he can.  As in, stripping the tumor away from the nerve, instead of removing the tumor AND nerve. We agreed to the plan and I’m on the schedule.

Part of me wants to message them and plead with them to cut me open and cut out everything last thing they can. Neck, armpit, chest, everything. But he didn’t want to do anything counter intuitive – I need to be at least semi-healed before I can get admitted and get the TILs going, and if making me more comfortable is one of the goals, making 17 incisions runs against that. So we’ll concentrate on the neck and keep our fingers crossed that my shiny new TILs will do their job and I won’t need to have anything else cut out.

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

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 since. There is a lot of numbness on in my neck and shoulder because of how the nerve on that side was yanked and stretched during the debunking, but that should slowly fade. The pain hasn’t been terrible, maybe because of the numbness, and can be controlled with tylenol. I’ve got two drains still in, and their output has been steadily decreasing. So everything is going along as it should. I have some swelling around my throat which is unnerving, but I can still breathe and eat fine.

I have a follow up with the surgeon on Tuesday, when they should be removing at least one of the drains. I had CT scans this afternoon, and on Wednesday I had an appointment with Dr Kluger, who does a lot of work with TILs at Yale. Port install has been scheduled for the 23rd. Now if only my liver will hold out a few more weeks…

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 reliant on how the TILs are growing, and if they need more time. They’ll confirm with me on Tuesday or Wednesday that the TILs are ready, and then off we go!

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

Tim

Thursday and Friday were Cytoxan, and Saturday I started fludarabine. Cell day, day zero, is Thursday.

This definitely isn’t for the faint of heart. Ive needed a chest x ray and ct to rule out a clot, plus numerous preventative meds: anti fungal, anti viral, antibiotics, and I’m currently taking ibuprofen and oxi as well, due to everything bombarding my bladder and making it irritated and wanting to very painfully empty itself every 15 minutes.

Further updates as events warrant. But I’m in the thick of the TILs. Interesting to note, so is someone else down the hall, her cell day was yesterday.

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.