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Is there a “typical” duration for getting immunotherapy?

Forums Is there a “typical” duration for getting immunotherapy?

  • Post
    nsreenan
    Participant

    I started immunotherapy for metastatic disease in mid-July 2020. My scans in October showed a favorable response. Call me impatient (because I am) but when will this end? (I’m tired of going for infusions, tired of my port, etc.) I know that the prescribing info says “until unacceptable toxicity or disease progression” but absent those criteria, how much time does immunotherapy take to do its job? Also, does a patient with metastatic disease need scans after immunotherapy is finished? If so, for how long? Finally, in general, how much survival time does immunotherapy confer?

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  • Replies
      Johnjk04
      Participant
      Nanwithaplan, congratulations on having a favorable response against the melanoma. Fifteen years ago, metastatic melanoma usually meant your family would be making a large payment to a funeral home in the future. Immunotherapy has given us our lives back. Dr. James Allison, one of the discovering researchers, says that if you go three years NED after immunotherapy, you will die of something else. I was in the very first trial of Yervoy and Opdivo, I had fifteen treatments over two years.
      Treatment days started at 8:00am and finished around 6:00pm. Being eight years NED, I’ll receive my final scans Sept. 2021.
      Try to push the impatience away and become so appreciative of this wonderful, life saving treatment that we have now.

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        Daisy2018
        Participant
        If you are getting treatment once a month you don’t have to have a port.
        If port is a constant reminder for you that you are a cancer patient ask your doctor to remove it and have your infusions through peripheral vein access.
        I m not sure about your age or condition of your veins.
        I don’t have a port for my immunotherapy.

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        Daisy2018
        Participant
        My immunotherapy should last for one year. This is what my oncologist said. He said this is what insurance covers anyway.
        I was planning to ask my doctor if, again if my treatment will be successful and side effects manageable to ask him to give it to me for one more year. I was contemplating to get money from my retirement account to pay for the treatment myself if insurance will deny it past one year.

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        nsreenan
        Participant
        Johnjk04, Thanks for your answer. It helps me to get the jist of how much longer this treatment will last. When was the first clinical trial of Yervoy / Opdivo? When was your last treatment? I’m curious of how long I’ll have to be followed by scans when the treatment ends. Your 15 treatments over two years means you had them somewhat less frequently than once a month—mine are every 4 weeks. Also, your treatment day was long! Mine is about two hours, including a visit with my oncologist. I’m aware that even 10 years ago the median survival with (brain) metastases was maybe 4-5 months. Maybe I am lucky that my melanoma took 13 years to metastasize, but because of that, I’ll never again believe that my melanoma is ever “gone”.

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        Johnjk04
        Participant
        Nanwithaplan, I know that I came across in a hard manner but researchers, oncologist and clinical trial patients have done so much to save lives. I started the trial in February 2012. My last treatment was January 2014.
        My nivolumab schedule was every 3 weeks for 7 doses, then every 12 weeks with 7 doses. The ipilimumab treatment was 3 doses over every 3 weeks and then7 codes every 12 weeks for 7 doses. The clinical trial identifier is NCT1024231. Treatment dates consisted of 8:00am blood draw and physical exam, 9:00am visit with the oncologist, sit in the treatment room while the pharmacy puts the doses together. Then 11:30am the treatment starts. Finish up around 3:30pm and sometimes an electrocardiography. Then you had to stay on premises for a 2 hour observation, usually I snuck out for an hour restaurant break. My treatment was at Yale-New Haven Hospital.
        I had melanoma in my brain, both lungs, liver, kidney, gall bladder, left adrenal gland and spinal cord. Two craniotomy, three Gamma Knife Radiations, about 8 surgeries, one blood clot still in my abdomen and the Ipi/ nivo trial.
        I know one young lady that went from Tennessee to Tampa Fl for her clinical trial, she’s doing alllll right.
        You last line states that you’ll never believe that your melanoma is “gone”. Fifteen years ago correct, now no way Jose. Dr. James Allison creator of our immunotherapy says, go NED three years after immunotherapy and you’ll have to look for another way to die.
        So the next time that you grieve, my appointments are two hours long, leave your address. I’ll fly in and punch you in the belly.
        Nanwithaplan, had enough? Have a Happy Thanksgiving !!!!
        All of us will always be here for you.

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        ed williams
        Participant
        Hi John, I think it is difficult for those who haven’t been part of a clinical trial to grasp some of the fun that comes with signing away your life. Early phase trials like you were on must have been a blast!!! To be asked to stay after getting treatment to see what might happen to you, speaks volumes to the unknown that you faced. I came later in the process, phase 3 with checkmate 067 where we didn’t know what we were getting since there were three arms to the trial. Ipi or nivo or the combination were the possibilities. I new early on that I was getting nivo because of how easy things were when it came to side effects, my guess was monotherapy nivo and 4 years later I found out I was right. Thanks for sharing your story John and one little thing, I think you trial had another zero in it (nct01024231) if this is the correct trial. https://www.clinicaltrials.gov/ct2/show/NCT01024231

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        Johnjk04
        Participant
        Thank you for the correction Ed. Another oncologist praised me for entering the clinical trial. I had to laugh because my only choices were the trial or die.
        Have a Happy Thanksgiving Ed !!!!!!!

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        ed williams
        Participant
        I hear you loud and clear, picking trial of unproven drug or death!!! I picked door number one as well in 2013 but they made me work for it. I had three small brain mets that needed some radiation in order to go away and that allowed me to qualify for the checkmate 067 trial. Thanks for leading the way!!! I am from Canada and we had Thanksgiving back in Oct. but I do enjoy all they US football that comes with your holiday next week.

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      Bubbles
      Participant
      Hi Nan,

      Don’t blame you for being tired of it all, but John makes some excellent points. I was diagnosed Stage IIIb in 2003. Had no treatment other than excision because there was none. Had an additional cutaneous melanoma lesion removed in 2007, again no additional treatment available. Routine x-ray in 2010 showed “something” in my lung. Followed that for over 6 months, with no change, but no resolution, had a bronch to biopsy. Yep. Melanoma, in the brain and tonsil too. Finally found a phase 1 trial of Nivolumab (now Opdivo) in Dec of 2010. We 30 ratties didn’t know if we would live or die, turn green or grow three heads. Neither Opdivo, Keytruda, Ipilimumab nor any of the BRAF targeted therapies were approved yet. Was in treatment for 2 1/2 years. It sucked. BUT!!!!!!!!!!! I have been NED (no evidence of disease) for melanoma for 10 years now. So yeah. Responses happen. And they can be durable.

      Today there are still far too many for whom the approved treatments fail. But, we are so much better off than once we were. With all those treatments now FDA approved, Stage III and IV patients have effective treatment options. For folks on adjuvant treatment for Stage III disease, the length of treatment is generally 1 year. For folks being treated for Stage IV disease, rather generally, duration of treatment is about 2 years. Most docs (and literature) suggest stopping about 6 months after one is NED or existing lesions that remain on scans show no sign of activity.

      Hope that helps. Here is some background info that may interest you.
      This is a primer of current therapies with some history and function of each – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html
      This was put together mostly for the adjuvant folks, but gives a history of approval for therapies – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2020/03/adjuvant-therapy-for-melanoma-state-of.html

      Having been swimming in melanoma infested waters for 17 years, I know I will never really be out of it. But, at least I’m still swimming. Even so, even in this crazy year – I have ever so much to be thankful for. I wish you my best. Celeste

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        Bubbles
        Participant
        PS – regarding scans…………

        I had an MRI of the brain with CT’s of the neck, chest, abd and pelvis every three months for all the years of my trial and for 2 years after. Then I had them every 6 months for a few years and finally graduated to annual scans. Two years ago, (after 8 years of being NED) Dr. Jeff Weber, a melanoma expert and lead doc for my trial, gave me his blessing for my “last” melanoma scans. Scan schedules are not written in stone, but requisite scan times are gradually becoming more clearly developed. Hope that helps. c

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        nsreenan
        Participant
        Thanks Celeste, It definitely does help–especially the part about 8 years of having NED. I too had surgery on my primary in 2007, and in-transit or local recurrence in 2008. Surgery was the name of the game in 2007 and 2008 because there *was* nothing else! Nancy

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      tkoss
      Participant
      first things first. a dose cost $6500. let me know how many doses you plan to pay for. i wanted to make sure my insurance would pay for opvido. so if you go to their drugs coverage pages there is a list of 10,000 drugs they cover, except of course really exotic stuff like Opvido which is on no insurer’s web sight. but it did manage to click blindly till up popped a Walgreen’s screen saying a does cost $6500. no mention it you can pick it up thru driver thru,

      my insurer sends me a statement after every infusion. the clinic charges them $19,000 and they pay $9500. most of that i imagine is Opvido.

      port 2x a month for a year, a breeze, especially if you consider the alternative.

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      ed williams
      Participant
      Hi Nancy, here is a really good read from a couple of years ago from a leading melanoma oncologist that tells some of the story of immunotherapy development and what we know and what we still have to figure out. https://provider.skincancer.org/the-melanoma-letter/2017-vol-35-no-1/nivolumab-ipilimumab-for-advanced-melanoma/

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      JudiAU
      Participant
      Truly I’d take these drugs for the rest of my life if they kept me healthy and cancer free. And I actually wish I’d gotten a port because my veins have been so brutalized. I’m a hard stick, I usually need 3-4-5 pokes before they get a good one. But, I had been through a lot before the melanoma and it is the cherry on top of my health journey. But really, I’ve read too many posts on these boards and go fund each threads about what happens when people have growth.

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        tkoss
        Participant
        apart from the full anesthesia to install the port , the port is a non- entity. you don’t notice it, there is nothing to maintain.

        for infusion there is a slight prick as the needle is inserted and during drip session you don’t feel anything. My routine is a saline drip for 1/2 hour while they mix the Opvido and then Opvido drip of 1/2 hour.

        i am sure Doc told me but 1 year treatment is simply what is recommended after trials. i could be wrong but they didn’t do trials for 6 months or 1 month on and 1 month off. there is no way to tell your level of Opvidio in your bloodstream. I am very interesting in how long Opvido remains ‘active’ for lack of better term because of knock on effect of Opvido and Covid. they can re-enforce each other, or not , depending on literature your read. Onc simply said the effects of Opvido are gone 2 months after last infusion.

        i missed 1 infusion session with no bad effects.
        NED at 6 month, 4 LN removed, 3c.
        got a Petscan for SLNB, MRI at same time. CT scan at 6 month and reco for CT scans in future.

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        Johnjk04
        Participant
        Judi, I hear you loud and clear. The port is like someone shows up to your house every three weeks with a gourmet dinner. Getting the port removed was a very sad day, worse than breaking up with my high school sweetheart. Judi enjoy the holidays, hope you always stay away and above the melanoma.

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      gopher38
      Participant
      Personally, I wouldn’t get the port out until I was very hopeful that I wouldn’t be needing it regularly again (I know you’re never sure). My first year of clinical trials were every two week infusions, plus labs, scan, operations, etc. Felt like someone was poking me in the arm basically every day, sometimes more than once. I think the port is MUCH easier, and I don’t find it much of an inconvenience. I can still exercise. Maybe I’d be worried if I was doing 500 lbs deadlifts, but not the case. I hope to get the port out, but I don’t plan on even asking about it unless I have quite a few clean scans behind me. I’d be really pissed to have it out and then a new spot pops up on the next scan.

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        nsreenan
        Participant
        I’m with you on not getting my port out until I’m sure I won’t need it. I never want to have a port installed ever again–nobody told me it we be so painful to have one put in. I was in bed for 3 days with ice pack on it! However, I needed a port b/c I’m a “hard stick” and terminally needle-phobic. The port is marginally more acceptable than peripheral needles–I refer to it as a “needle trampoline” because it feels like the nurses attach all the tubing with a thumbtack to the port.

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      maryb-z
      Participant
      Hello!
      I have been dealing with this disease since 2009. I just completed 2 years of Opdivo. I tried the monthly dose but my body could not handle it so twice a month at half the dose was decided. I’m so glad I have my port as after interferon my veins went to crap. I plan on keeping it for another year and get it flushed monthly. I’ve had 8+ recurrences so I am.keeping port in case. Through my 2 years of treatment I’ve had PET scans every 6 months to ensure Opdivo was doing its job. My melanoma specialist wants to follow me closely and never uses the terms cancer free. I’m currently. NED but with my history of recurrences I’ll be monitored for the rest of my life. I’m stage 3C. Every doctor is so different on how often to scan and using CT versus PET. One doctor only wanted PET and only a year of Opdivo. Another feels CT is sufficient and 2 years treatment. I opted for 2 years of treatment and PET scans. Best of luck to you!

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        tkoss
        Participant
        3c here. last treatment opvido next month after a year.

        i have quizzed my doc about PET vs. CT.
        i didn’t get a very convincing answer. they have made it clear that economics drive some decisions making.

        i have always considered my Onc is NOT a melanoma experienced doc.

        so what is your take on PET v. CT scans?

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        Johnjk04
        Participant
        Toss, best to start a new topic, so people can see your question up front. I have been going to Yale-New Haven since 2008. Never had a PET as an there. The oncologist believe that CT and brain MRI give them all the information.

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        Johnjk04
        Participant
        Tkoss- if your oncologist is not experienced in melanoma, fire her or him. You have to put yourself in the best position to beat this disease. Find the best melanoma experienced oncologist, remember you are the only stakeholder.

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      TexMelanomex
      Participant
      I did Pembro for 2 years (every three weeks) and the last year of that I was NED. I was part of a clinical trial (with PV-10) and I believe 2 years was the protocol for that study. I never had a port but I’m an easy stick with vascular arms. Congrats on the favorable response! Like someone else said, I would also do every three weeks for life, gladly, if that was what it took to put the hurt on Melanoma! Warrior On!

      Tex

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      youngann
      Participant

      tkoss: apart from the full anesthesia to install the port , the port is a non- entity. you don’t notice it, there is nothing to maintain.

      You don’t have to have have full anesthesia for port placement. I had mine installed with lidocaine, …lots and lots of lidocaine. I can’t say it was a pleasant experience but it’s definitely doable.

       

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