Stage IV Melanoma

So I am entering new territory- after two years of being stage III and playing the wait and watch game my melanoma has spread to my lungs. After surgery to do a biopsy, the doc told me they couldn't surgically remove all the abnormal growths without turning my lungs into Swiss cheese... obviously not an option! I have elected to start high dose IL-2 treatment in hopes of being in the lucky 6% where the cancer magically goes away and never comes back. Sounds like this treatment is concentrated evil itself with 5 days and up to 14 doses (most can't tolerate all 14) administered in the ICU, one week off, another 5 days of treatment in the ICU, and then wait 4 weeks to scan and see if it works. If I am one of the lucky complete responders then I won't need any further treatment, but if not then on to the next drug!


  • 32 Comments sorted by Votes Date Added
  • I hope you are part of the 6%. The treatment sounds rough, but you can do this! Best wishes!
  • Best of luck! You can do this!
  • Start treatment Monday! Going to enjoy my weekend as much as possible :)
  • good luck. have fun this weekend! an old college friend of mine just got treatment for melanoma. not sure what stage it turned out to be, but she said it was at least stage 2 quite some time ago. she had multiple surgeries and was recently declared cancer free by her docs. hope you see improvement out of your upcoming treatments.
  • Well isn't cancer sneaky... I made it through IL-2 and just had my scan to see if it worked... But since nothing grew or shrank I have to wait another month for another scan to determine if it really worked! For now though I'm happy it's not growing :) Also feeling great after a month to recover. Safe to say during treatment I was NOT feeling great, I couldn't eat anything both weeks in the ICU and was so sick I hardly remember anything (which is probably good).
  • No new growth is pretty good news! I'm glad you're enjoying your rest time. You deserve the break!
  • Unfortunately the last scan did show slight growth in a couple spots - so tomorrow I start treatment in a phase 1 clinical trial with IL-21 and ipilimumab. I get IL-21 every Tuesday through the end of August, and ipi every third Tuesday starting the fourth week. I am a little anxious about the side effects of the two drugs combined since they haven't been tried together before there was no information to read, and sad to see my entire summer taken up with treatment - but hopefully it won't be too bad, and hey, maybe it will work :) Just to make life extra fun for me my landlords say they are going to raise the rent end of June, so I may have to move :( I am waiting until they say how much before I try the "but I'm only 26 and I have stage 4 cancer and am currently in treatment... could you not raise the rent or at least give me until the end of treatment?" plea. I know it's their income but I'm hoping they'll be generous!
  • Mishanne,
    Last year I was diagnosed with stage III melanoma. I'm sure you were discouraged as I was to find out the treatment options after surgery are very limited. I did choose to take part in a clinical trial. But after three months of being on the drug (vemurafenib) I medically had to be taken off. I'm not sure if it did any good but at least in my head I felt better since I was being monitored more than what my local medical oncologist was allowed too. So far all of my PET/CT scans have been negative though this Jan I have had 5 moles removed and all 5 have come back in various stages of moving towards melanoma. I am relieved that these were caught in time but a little unnerving to think that there could be just one somewhere that could be moving towards melanoma.
    I have read some exciting research articles about IL-2 treatment and how they want to combine with ipilimumab or vemurafenib. Are you BRAF negative?

    I hope that your cancer responds to the treatment.
  • I have been a little behind in my updates here... The treatment last summer with IL-21 and ipilimumab did not work unfortunately, and I had to come off the clinical trial because my liver and pacreas objected (as in took a trip to ER) to the IL-21. Luckily once I stopped taking the IL-21 everything recovered without having to take steroids and I was able to continue with the ipi which just makes me tired and itchy mostly. I started having pain in my lung (where my mets are) this fall and started stereotactic radiation and more ipi this winter which I just finished - still waiting for results. This is something currently being studied but there is the potential the radiation can help make the ipi work, somewhat of a vaccine effect where the ipi recognizes the cancer cells damaged by the radiation and then goes and seeks them around the rest of your body (at least that is how I understood my doctors explanation). At the very least the radiation had made the pain less so I'm happy about that :) But if this last treatment didn't work than yes, I am BRAF positive and Vemurafenib is an option... but as I understand it for patients with mets already it causes only a temporary remission so I am still trying other drugs that may have a more long lasting effect with out having to continuously take something. My oncologist mentioned IL-15 (I think?) as another treatment option coming out in clinical trials that I may be able to try - it is supposed to be similar to IL-2 but the side effects not as bad. I will try to post an update after my scans at the end of March once I know whether this last treatment worked and what the future plan is! Haha, pretty soon I'm going to have personal experience with most of the advanced melanoma treatments, I'm on my way to becoming and expert ;)
  • Another update: So no luck with radiation and ipi - some spots did shrink (besides the spot that was targeted by the radiation) but other spots grew or appeared. Perhaps a blessing in disguise because one of the new spots was in my breast and easily removed for potential TIL therapy in my future. Not that having someone cut a lump out of your breast is exactly fun but given most the rest of my mets are in my lungs (and I can say from experience even the littlest of lung surgeries are not fun) I was quite happy to have an easy to access mass on hand for them ;) They will use the cells from my tumor tissue to try and grow LOTS of cells in the lab to inject back into me and fight the cancer, but I am not about to sit around and wait while they work on that though so in the meantime I'm taking a new drug IL-15. The IL-15 is a phase 1 clinical trial meaning they don't know much about potential side effects or benefits yet but so far it has been downright easy, a little nausea and fatigue and low blood pressure. It is supposed to work similar to IL-2 but with less side effects so you can have it outpatient - I get a dose a week for four weeks, two weeks off, and then another dose a week for four weeks. Fingers crossed this drug is the one and then I won't even need the TIL therapy :)
  • Little behind on my updates... What can I say? I have cancer - best excuse ever ;) Anyway, I wanted to continue posting about my melanoma treatment journey here in hopes that it will help someone else sometime to read.

    I tried the IL-15 last summer with no luck, I don't remember it being too terrible of a treatment to try though... To be honest my pre-TIL therapy memory is a little fuzzy... I had the TIL therapy in October and that was tough - two weeks in the hospital with chemo (I have cool short hair growing now), followed by the TIL infusion (cells engineered in a lab from my own Timor tissue), and lastly a round of IL-2 in the ICU. I did have a partial response to the TIL therapy but after a few months more spots grew than shrank, so on the the next drug! I tried to take the FDA approved PD-1 drug but was denied by both my insurances because I haven't tried Vemurafenib (Zelboraf) yet. I don't WANT to take that drug yet... But it all worked out in the end because I got into a trial for PD-L1 (a similar drug) combined with Cobimetinib (a MEK inhibitor) and two drugs are better than one right? Anyway, that brings us back to the present. So far fatigue and digestive issues seem to be my main side effects, really not too much to complain about. I think it is pretty badass that this is my sixth different treatment, how many would it take to hold the record? ;)
  • MahryaMahrya Community Member
    You deserve a lot of kudos for making it through six treatments. Seriously, it is very impressive. I'm just starting on my first round of treatment after being diagnosed as Stage 4 in January. I have mets on my lungs, liver, and I had an orange-sized tumor in my small intestine. That one had to be removed surgically. I'm on Nivolumab and Ipilimumab. Just had my first infusion last week. So far, it's mostly been fatigue for me, too. I kind of feel like I'm always about to get the flu. I'm curious how people with advanced cancer keep their mental state up. I feel like I'm drowning here. Crying all the time. Feeling too weak and depressed to do much of anything. I'd love to hear others' thoughts.
  • Over a year late replying here...
  • Well I wrote a fantastic 2 paragraph post which disappeared except the first line. In summary...

    After over 2 years on a PDL1/Cobimetinib trial my hematocrit is down and weight dropping with some new stomach trouble so they are pulling me off the trial. Bit of a break for my body then on to treatment #7! Possibly another PDL1 combination?

    As for my mental state I do find I get depressed watching everyone move forward with their lives around me while I'm perpetually stuck at home sick or at the docs... But it doesn't usually drag me down much I have accepted my situation and try to focus on positive activities. Simple stuff like playing games, just picked up cross stitch, find people to chat with online, etc. I tend to look for the humor and fun in things and enjoy the moment
  • I see you've been in the melanoma game a while.. which seems to be pretty typical with us late stage melanoma folks. I'll be at 2 years dealing with it myself soon. Stage 4 is a bitch, and hanging in through the roller coaster of treatments and feeling shitty is hard. I hope to move on with my life with no melanoma someday, but I know that could be a while from now. Just wanted to say Hi and you're not alone :)
  • Disappearing text again! Also was saying sometimes I think being super stubborn is all that keeps me going I don't know how to quit
  • Being stubborn and staying positive is definitely how I get through it all too
  • Well just got the latest scan results today... "disease progression" so my lovely summer treatment vacation is over. Assuming I can get my blood counts up enough and my brain MRI is clear I will be starting a clinical trial where they combine infusions, pills, and radiation... A trifecta of fun I'm sure!
  • Damn, sorry your treatment vaca is over. Hope this next trial is the kick ass trio your body needs!
  • Me too, they offered just infusions not on a trial but hey I like to go big ;)
  • Go big or go home, right?!
  • Well scratch trials for now... MRI Friday turned up a 2 cm x 3 cm brain met in my right frontal lobe... So now the plan is brain surgery near the end of this month (woo hoo), gamma knife radiation to the hole left, then perhaps some radiation and drugs for the rest of me. No biggie...
  • Dang! Well, you'll get that bastard cut and zapped and then systemically kick butt too. There tends to be better results when the drugs come soon after zapping brain mets, so it can work together as a team.
  • Absolutely, I still have another big new met near my rectum that they wanted to zap before during treatment so they may still do that in tandem with drugs after my brain met is taken care of. I've had ipi and radiation together before so heard the theory about drawing the immune systems attention to the cancer via the radiation and then the immune system (assisted by the drugs) doing a better job attacking cancer in other places too not just the spot getting radiation. So fascinating all the stuff they come up with now!
  • Brain surgery went well, got the gamma knife radiation to the hole left after surgery and a few tiny other spots that had popped up in my brain, then I had to have another surgery to fix my skull since the frame from the gamma knife moved the skull section from the first surgery! Finally all set to start a new clinical trial... treatment plan #7 for me but not quitting ;) This time I'm on the immunoRAD trial - I take Nelfinavir orally twice daily, Nivolumab (Opdivo) infusions every other week, and 3-5 doses of radiation between the 2nd and 3rd dose of nivolumab. Hoping this treatment at least gets me stable again :smile:
  • Glad that went well and you're going to get the awesome benefits of radiation + immunotherapy. I got the good news that my Opdivo infusions will end in November and I will have surgery to remove the last tumor and then I can live life a little more normally for a while! Sending good vibes your way so you can get back to stable (or even better, NED!)
  • Thanks and that's great news! Hope the surgery goes well :smile:
  • My Latest Update:

    My cancer progressed again on the ImmunoRAD trial... This year I've been trying targeted therapy but keep having to hold treatment for fevers. I started with the Dabrafenib/Trametinib, then just Dabrafenib, then Vemurafenib/Cobimetinib, and most recently back to trying to make Dabrafenib work. The Dabrafenib gives me fevers of 102-103F but I couldn't tolerate the Vemurafenib combo at all - ended up in the hospital with a fever over 105F and a full body rash! My doc has me on 50 mg of prednisone a day to try and control the fevers and only 50% dose of Dabrafenib but a fever popped up this morning anyway so treatment is on hold again. I also was recently hospitalized for a bowel obstruction which fortunately resolved without surgery - I was told since several potential points of obstruction looked like metastatic melanoma there would be no point in trying to surgically fix my bowel, instead they would just do surgery to insert a tube into my stomach to relieve symptoms! For now I'm doing ok on a low residue diet with Miralax. My latest MRI showed more new mets in my brain, they are relatively tiny so for now the docs are just keeping an eye on them. Of course I have other mets all over now too.

    The Dabrafenib helps when I can take it, but my cancer grows back fairly quick when I have to stop due to fevers. Originally the idea was to try to get on another clinical trial down the road but with my recent problems I'm not sure if I would be able to qualify. Eventually I know I will develop a resistance to the Dabrafenib and since I've tried just about everything else FDA approved I'm not sure I have many options left. But I'm still living at home for now (except the hospital visits here and there) - I play my games and cuddle my pup and enjoy life as much as I can :)
  • juls4juls4 Community Member
    Ugh. So sorry you're going through this. It's so frustrating to hear about the potential of new drugs and immunotherapy, when the news stories often don't mention the side effects like fevers that make it so difficult to stay on them and let them work! I get fevers when I first start a chemo drug and then my body seems to learn to tolerate the drug better as time goes on, so I hope the same happens for you with the Dabrafenib. I know I've been told repeatedly by doctors that diet doesn't make much of a difference, but I wonder if there are anti-inflammatory foods or something that could help make the drug more tolerable or keep your immune system from over-reacting? And do you have the option to use medical/therapeutic Cannabis to help with any pain? I've been reading about how it also is thought to have anti-cancer effects and is definitely supposed to be anti-inflammatory. I haven't gone that route yet myself, but I have a state issued card that allows me to get some edibles if I need it. Glad you have a dog to hang out with like I do, my dogs make me laugh every day. I've also been watching bird drama in my backyard and trying to spend as much time outside on nice days. I think I may invest in a lounge chair and read my books outside instead of inside. Thanks for updating. Even though I don't have melanoma I learn about cancer treatment and what people go through at different stages of treatment which is helpful to me. I'm sure this information will be really useful to anyone else going through melanoma treatment too. Good luck.