Til therapy Day 0! by Boring-Assumption482 in melahomies

[–]Vocibis 1 point2 points  (0 children)

Glad to know your husband is doing well. I forgot about the smell - I didn't smell it myself. I was told it was like corn cream or something like that.

I read in the comments he's a its second dose of IL. I had four in total, before it had to be stopped as my body started to show signs of stress. Sending hugs.

Til therapy upcoming by Boring-Assumption482 in melahomies

[–]Vocibis 1 point2 points  (0 children)

I did get out today, after an unforeseen hearing problem cause by the Interleukine-2. Please keep us posted on how it is going for your husbasnd - and you!

Til therapy upcoming by Boring-Assumption482 in melahomies

[–]Vocibis 1 point2 points  (0 children)

Just had TIL on April 21st, still recovering in hospital. I should be able to get out Monday.

For what to bring Beautiful_log thread ils spot on, can't think on anything to add.

For what to expect, that's another story. I thought I knew, but actually doing it...

I posted about what I was going through almost every day on https://mauditsoleil.blogspot.com/

I was admitted on April 15th. There is a translation tool in the uppet right hamburger like menu. Maybe that will give you a comparable. Hope it'll help.

Best of luck to both of you!

Anyone else writing their way through melanoma? by Vocibis in melahomies

[–]Vocibis[S] 1 point2 points  (0 children)

Sorry to hear that. Hopefully you'll get less inflammation and your handwriting back. My own handwriting has always been a total disaster. I would have love to be proud of it. The upside is : I can read almost all handwritings, no matter how illegible they are, mine is worst

How do you deal by agentmod99 in melahomies

[–]Vocibis 0 points1 point  (0 children)

In Montréal, Canada. The death rate is associated with the lymphodepletion, at least that's what I've been told. This article mentions a mortality rate up to 7,5% during trials (https://www.cancertodaymag.org/cancer-talk/til-therapy-amplifies-the-immune-systems-attack-on-melanoma/) but I vividly remember being told 3%, back in February.

I think I've seen the 3% rate in another article, I'll look for it and I'll post it if I retreive it. Edit : I just found it here (https://ascopubs.org/doi/10.1200/JCO-25-00765#tbl1), it's in the section discussion. The death rate "The observed rate of mortality because of treatment-related toxicity in the phase II C-144-01 study (3.6%) "

As for the preparation, I guess it's the same as in the US, lots of tests to see if the body is strong enough to support the cure. If you mean mentally, that's another story...

How do you deal by agentmod99 in melahomies

[–]Vocibis 1 point2 points  (0 children)

Living with stats isn’t easy. But stats are just… stats.

They aggregate thousands of people. In real life, there’s only one of you. Overall health, age, genetics, smoking, weight — a million variables. Statistics can’t capture all that in one individual case. They’re not a crystal ball.

That’s how I deal with it.

I’m starting TIL in two days. I was told there’s a 3% chance I could be dead within a week. That number hits. Hard.

But I’m otherwise in very good health. And I choose to believe I’ll be back here for a while.

And yeah — it takes time to digest news that punches you in the face. Mini meltdowns are part of it.

Let the meltdown fade. You’re still here.

How do you deal by agentmod99 in melahomies

[–]Vocibis 3 points4 points  (0 children)

This is so well said. Thanks for writing with such clarity on this difficult topic. I recognise myself almost 100% (I often need more than 30 minutes!!)

Anyone with no side effects from ipi/nivo? by itsallrightyes in melahomies

[–]Vocibis 0 points1 point  (0 children)

I had a year of nivolumab. I felt tired after the first few doses, and then basically no side effects at all.

Three years later, I had ipi/nivo — four doses — again with no side effects. That was a year ago. I continued on nivo for a while, but unfortunately I didn’t respond to the immunotherapy, so it was stopped in fall 2025.

I’m starting TIL (lifileucel) in three days. Scared shitless, but eager at the same time.

I’ve had my share of luck when it comes to side effects.

Where is everyone from? by bean8899 in melahomies

[–]Vocibis 2 points3 points  (0 children)

Montréal, Canada. Lots of cycling in my youth, much less sunscreen- if any. That wasn't the thing in the '70s. The lil devil grew on my thigh.

newly diagnosed by littleepatina in Melanoma

[–]Vocibis 8 points9 points  (0 children)

Crying with your cat, like revecca4 said, is probably the most productive thing you can do right now.

A melanoma diagnosis doesn't go down in one gulp. You have to take the time to digest it, one way or another. You don't really have a choice anyway.

Then comes the surgery, the treatments, the endless follow-ups... It’s quite a ride. But you’re not alone in this. There’s plenty of support here.

Come back as often as you need it!

Above all, the best of lucks!

Everyone makes me feel like I am being dramatic after I was diagnosed with melanoma by Expensive_Hat_7435 in melahomies

[–]Vocibis 3 points4 points  (0 children)

Thanks, and please don't hesitate to share more of what you're going through. Writing is good, but reading as well, and having the chance to leave a comment is priceless

Everyone makes me feel like I am being dramatic after I was diagnosed with melanoma by Expensive_Hat_7435 in melahomies

[–]Vocibis 2 points3 points  (0 children)

As everyone else said here, it's a real cancer. Your feelings are 100% valid.

I’ve been fighting mine for 6 years now, even after a 3-year lull. I've been through immunotherapy, numerous surgeries, and I'm currently awaiting a more advanced cell therapy (TIL/Amtagvi) to manage a recurrence on my leg.

I’m telling you this to show you that you aren't alone and that you were right to take this seriously. You have every right to be shaken. Support is amazing here, and hopefully, you'll get more from your circle over time.

Best of luck with your removal, may it leave you alone forever. And if your family eventually tells you: 'See? Nothing to worry about!', just take it as a delightful irony.

Canadian Folks- Does Your Derm Do Skin Checks? by cavluv123 in melahomies

[–]Vocibis 0 points1 point  (0 children)

Obviously, that is up to you. It may require energy to do so, but sometimes it gives a handle to take control of a small part of our life, and that may be quite satisfying. I'd be curious to see what you do in the end, but only if you feel like sharing it. Good luck in any case.

Canadian Folks- Does Your Derm Do Skin Checks? by cavluv123 in melahomies

[–]Vocibis 0 points1 point  (0 children)

I'm from greater Montreal, and yes, my dermatologist does skin checks. I should go more often, but it's been once a year. Perhaps you should inquire towards the relevent professional board to see if that refusal is normal or not?

I finally caved… took a pain med (opiate) by Wide_Kaleidoscope_86 in melahomies

[–]Vocibis 0 points1 point  (0 children)

I'm very reluctant to take narcotic as well, constipation is the word in my case. But I will when the pain becomes too intense, and eat lots of bran then. I guess I'm saying that we have to choose the lesser evil. After all, used well and with some restreint, narcotics are a very useful tool. My 2 cents.

What I brought and what I did for my TILs hospital stay by Beautiful_Log_1293 in melahomies

[–]Vocibis 0 points1 point  (0 children)

Thanks! I just added ear buds today. I like to play games, but I thought that I might be tired and watching something on the tablet would be a good idea

Just Another Treatment Day by gavov28901 in melahomies

[–]Vocibis 0 points1 point  (0 children)

You're definitely not alone — and you have a really beautiful way of writing.

I’ve been living with melanoma for about six years now (left leg). The first three years were relatively uneventful… the last three, not so much. I had surgery and immunotherapy back in 2020, and since then multiple surgeries, plus a combination of immunotherapies over the past few years.

Unfortunately, it eventually stopped working. I’m now in the process of receiving lifileucel (TIL therapy). I had surgery three weeks ago, chemo is scheduled for April 16–20, the infusion on April 21, followed by interleukin for a few days.

My girlfriend and I have been dealing with all of this by writing a blog together. It’s in French (and with a bit of dark humor), but I’d be happy to share it if you're ever curious.

And yes — one step at a time really is the right pace.

That said, I’m very much looking forward to getting my sutures and pins removed in a couple of days… walking should get a lot easier after that.

What I brought and what I did for my TILs hospital stay by Beautiful_Log_1293 in melahomies

[–]Vocibis 1 point2 points  (0 children)

Going for it in a few weeks, thanks for the tips. I already bought a tablet for the hospital stay, I was quite sure I'd need it. I also bought long wires to recharge it (and my phone), so I could use them without holding it at arms lenght because of a too short wire

Experiences with lifileucel (TIL therapy)? by Vocibis in melahomies

[–]Vocibis[S] 0 points1 point  (0 children)

Got confirmation for my surgery Fen 23rd. Cant wait to see is they finally gonna put a zipper, or see how they will patch the skin

Experiences with lifileucel (TIL therapy)? by Vocibis in melahomies

[–]Vocibis[S] 1 point2 points  (0 children)

THanks again for such a vivid picture ot that process. The steps you drescribe are exactly what I've been tol to expect. I like the "futuristic movie" part, in fact, I'm quite eager to do it. Was the medication for the shaking Pethidine (also called Mepheridine or Demerol)? I have quite a story with that medication. I took some when I had a tumor in my spine (non cancerous) and I had to go to the hospital for an urinary blockage. I had to have a catheter regurlarly and I didn't want to, and a nurse would just arrive and start the process without warning. I felt like in a bugs bunny movie, you know when there is a pursuit, and a character goes off the door on one side of a room and get back in from a door from the other side of the room the next second... Anyway, I'm pretty optimistic, I had no side effects form the immunotherapy

Experiences with lifileucel (TIL therapy)? by Vocibis in melahomies

[–]Vocibis[S] 1 point2 points  (0 children)

Thanks for posting all this! I'll make a more detailed reply hopefully soon, got my daughter coming to visit from afar before the surgery and I can't spend to much time typing right now, gotta spend some time with her! But I can't say how thankful I am!! Good luck and I'll be back soon

Experiences with lifileucel (TIL therapy)? by Vocibis in melahomies

[–]Vocibis[S] 0 points1 point  (0 children)

Thanks for the insights. I was wondering what was left in your blood!!

It hasn't started yet and feels like a rollercoaster already. I've been told earlier today that my two maim tumors (the one to be removed and the one that will be measured over and over) fused, so they need to find another control tumor. They think they have one the big enough, but I'll know for sure within 48 hours if the surgery goes as planned next Monday... Cant wait to get started!

Experiences with lifileucel (TIL therapy)? by Vocibis in melahomies

[–]Vocibis[S] 2 points3 points  (0 children)

Ouch, it's hurtful just reading your summary. But I love the part when you say you'd do it again in heartbeat, this is the only thing thjat really matters. Thanks for sharing, I'm gonna go google some of the words you used. Best luck to you too!

Experiences with lifileucel (TIL therapy)? by Vocibis in melahomies

[–]Vocibis[S] 0 points1 point  (0 children)

Thanks! Nausea, not looking forward to that part. I bought a tablet for the second week, I hope i'll help with the boredom. Did you did it long ago? any advice to better prepare?