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Nodular Melanoma Stage IIB, Recurrence in-transit metastasis

Forums Cutaneous Melanoma Community Nodular Melanoma Stage IIB, Recurrence in-transit metastasis

  • Post
    Redstar.20
    Participant
    Hello! I am looking for support from those who have experience with all of this. 3 years ago I was diagnosed and 2 months ago it came back. I find that my doctors use vague words, and do not want to paint a very clear picture of where I am and what the future may look like. I, of course, have been doing my own research on the internet and I have found a lot of information on it. My doctor wants to be upbeat regarding the course of treatment and doesn’t want to focus on possible side effects until they are a problem.
    Course of treatment is 1yr of Opdivo every 28 days. I have read about this drug, and I have read it only works on 50% of the melanoma patients. I have read extensively on the side effects of this drug, and there are a few of them that I already suffer from, like frequent diarrhea, frequent mouth sores, upset tummy. Has anyone suffered from these ailments prior to treatment of Opdivo and not had them worsen during treatment? How long after infusion do the side effects start, if there are any? Has anyone had the same stage and recurrence as me, and had Opdivo, only to have another recurrence after treatment?
    I know everyone’s experience is different but I sure could use more information from those that are going through this, or have been through this.
    Thank you!

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      tkoss
      Participant
      first there is this about staging: https://www.aimatmelanoma.org/stages-of-melanoma/stage-ii-melanoma/

      I am 3c or IIIc if you prefer. I began Opvido or the generic name Nivo. I get 240mg x2 per month for the next 12 months. I have had 4 infusions so far.
      I have absolutely no , zero, nada, zilch side effects. Generally it takes them more time to mix the drug than to infuse it. Again I get 240mg x 2 per month and infusion takes about an hour.

      did they install a port in your chest? that would determine how you are infused. if NO port, then you are infused by vien and so they want to do that less often. Port is no problem but its is expensive for your insurer and requires surgery under anesthia. It is easier for the clinic and of course your veins could collapse or be hard to find. I have a port and it is not noticeable for my daily activities.

      one thing you might want to find out is how much experience does your Oncologsit have with melanoma.

      they can be vague because they simply cannot predict is your treatment will work. 50% sounds bad until you realize that 3 years ago is was around 20% Immunotherapy, which stimulates your immune system to attack the cancer, has been very successful. The side effects are do to the fact that the enhanced immune system some times attack the rest of you. I have heard from a lot of folks that they didn’t have any side effects. there are treatment for stage 4 where they use opvido with yervo and there are a lot of side effects from the yervo. but that isn’t you.

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        tkoss
        Participant
        the 50% survival rate was told to me by my oncologist and I reviewed articles about survival rates and its seems that’s up from 24% for Ipi alone.
        Nivo was only approved for melanoma in 2017.

        to the poster: survival rates are really just a statistic. but I content myself with the idea that I got a better than even chance to come out of treatment in remission. I have no scientific basis to believe that other than I don’t have any other health issues. I also figure there might be some significant developments over the next year. But really I think its humane nature to assume its not gonna happen to me.

        I kid my caregivers, ‘ I have no symptoms and no side-effects, whose gonna believe I got cancer?” A nurse suggested I get a tattoo. that’s a little drastic and it won’t elicit any sympathy from friends or family anyway.

        The jargon too is confusing and my advice is to learn it. It makes understanding a lot easier.

        Given my age and er….condition, I am more concerned about surviving Covid right now.

        hang in there.

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        Bubbles
        Participant
        TKOSS –

        Opdivo (nivolumab) was approved for use in melanoma in 2014. It is super important that we are careful with the “facts” we share, especially with new peeps who are confused and trying to process a great deal of new information all at once. Here’s a time line that may interest you: https://www.drugs.com/history/opdivo.html

        Hope that helps. I wish you my best. celeste

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        tkoss
        Participant
        Bubbles
        Participant
        Read all the way down.

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        tkoss
        Participant
        you will have to explain why this is incorrect: ” Bristol-Myers Squibb Receives FDA Approval for Opdivo (nivolumab) as Adjuvant Therapy in Patients with Completely Resected Melanoma with Lymph Node Involvement or Metastatic Disease” in Octboer 2017.

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        ed williams
        Participant
        Hi Tkoss, I have no interest in getting in the middle of this back and forth but from the 10 000 ft view of this back and forth it is clear to me that you taking stage 4 overall survival stats of 52% to 54 % survival with ipi+ nivo from clinical trial experience like checkmate 067 which is published in fall of 2019 and using that as a # for survival for stage 3 adjuvant folk. There are two main adjuvant trials to follow, one called chcekmate 238 (nivo vs Ipi) for 3b,3c and early stage 4 resected melanoma and keynote 054 also called EORTC-1325 where pembro is compared to placebo for 3a,b,c melanoma patients. In these two main trials that are publishing, they are only talking RFS (recurrence free survival) not overall survival because that takes more time for data to mature, now this spring there might be some survival data from checkmate 238 at ASCO, but not 100% sure on that one. So using overall survival in any discussion of adjuvant patients is premature at this date in time. Here is a couple of links, first one Dr. Weber from 2020 on state of adjuvant trials, data and trials in progress like checkmate 915 looking at low dose ipi+ nivo. https://www.onclive.com/web-exclusives/adjuvant-therapy-transforms-treatment-in-advanced-melanoma https://www.nejm.org/doi/full/10.1056/NEJMoa1709030 https://www.nejm.org/doi/full/10.1056/NEJMoa1802357

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        ed williams
        Participant
        I been having one of those long nights that many of us experience and I made a mistake in word choice “sorry about that” ( recurrence is wrong choice of words, I should have used ‘relapse” in the second set of brackets!

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        Bubbles
        Participant
        TKOSS,

        This is a huge intrusion on Red’s post at this point, but because facts matter in all things and are especially important in melanoma – I will, in the words of my favorite professor: “Begin again.”

        It is clear from your posts here and on my blog that your diagnosis of Stage III melanoma and the treatment involved has been a huge stress and source of anxiety for you. Entirely understandable. So it is for all the folks newly diagnosed and coming here for factual information and comfort. That’s why being as accurate as possible matters a great deal.

        1. Ed is correct in noting the difference in your reported “data” on “the 50% survival rate” you quoted and the data available in regard to nivolumab (Opdivo). It can get confusing really quickly because you have to make sure you are talking about the right drug, used in folks in the right stage you are discussing AND the right category of “response”. Are the studies describing “response rate”, “progression free response”, “overall survival” or as you put it: “survival rate”, etc?????? Those categories can mean very different things.

        2. As a person who was likely somewhere between the 28th – 36th person in the United States to take nivolumab, via a clinical trial in the ADJUVANT arm as a Stage IV melanoma patient in 2010!!!!!!!!!!!! – I know from experience that it makes a HUGE difference in having a collection of data and information behind your treatment option and NOT!!!! Here’s a little story that tells the history of Opdivo or as I took it – MDX-1106 – if you are interested: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/06/love-potionor-patient9.html

        3. So, it is not factual nor comforting to assert: ” I reviewed articles about survival rates and its seems that’s up from 24% for Ipi alone. Nivo was only approved for melanoma in 2017.” If I am wrong, and you have articles that back up that assertion, then I would love to see them.

        4. Not going by MY assertions – if you look at the link I gave you, it shows a timeline of all the FDA approvals given for OPDIVO – https://www.drugs.com/history/opdivo.html
        For the year 2014 (6 years ago) you will find this: https://www.drugs.com/newdrugs/fda-approves-opdivo-nivolumab-advanced-melanoma-4133.html
        This report from 2014 states in part: “December 22, 2014 — The U.S. Food and Drug Administration today granted accelerated approval to Opdivo (nivolumab), a new treatment for patients with unresectable (cannot be removed by surgery) or metastatic (advanced) melanoma who no longer respond to other drugs.”

        5. This means, that under FDA approval (apart from the fact that melanoma ratties in the United States had been taking Opdivo since 2009) melanoma patients were treated with Opdivo since 2014. Studies from us ratties as well as data that grew with the 2014 approval consistently show that folks with Stage III and Stage IV inoperable melanoma have response rates of around 40% when opdivo is used as a single agent and through that use we learned what dosage to administer, the likely side effects, rare adverse events that might be encountered, how long they last, and how best to treat them. Important information that you do not have when a drug is first being used to treat a particular disease.

        6. In all that trial and error – ie learning – researchers discovered that folks with melanoma responded best to immunotherapy when they had the least possible disease burden. This leads us to adjuvant therapy. Adjuvant therapy is given to a person when their tumor has been removed by surgery and/or radiation. Despite knowing since my trial – though the data wasn’t published until 2014 – that we 33 ratties (2 stage IIIC and 31 Stage IV ) did very well when we took opdivo as adjuvant, the FDA did not see fit to approve opdivo for use as adjuvant in melanoma until 2017. You can see the results of the adjuvant arm of my study here: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/cest-moi-results-from-33-raties-in-my.html It notes: “Our data suggest that nivo is clinically active in resected stage IIIC/IV melanoma, based on low rate of relapse (10 of 33), impressive relapse-free survival – estimated RFS of 47.1 months, and median overall survival not yet reached with over 32 months of follow up.” REMEMBER – we have learned even more since then!!!!!!!!!!!!!!!!!!!!

        7. Here is a report on ipi vs nivo in the adjuvant melanoma setting from 2017: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/09/nivo-better-than-ipi-as-adjuvant.html
        That study shows ~ Recurrence free survival at 18 months: 66.4% for nivo 52.7% for ipi
        OVERALL recurrence free survival was 70.5% for the nivo group (vs 60.8% for ipi) at 1 year…but…when you pull out the Stage IV folks the number was 63% for nivo vs only 57% for ipi.

        8. NOW! When you break things down further, as the info above is beginning to show, folks who are Stage III do better than folks who are Stage IV no matter what you do or don’t do to them. So you can’t just take all the information gleaned from Stage IV patients and throw it at Stage III patients as fact. For instance, in the last report in this post, that addresses Stage III melanoma patients treated with Yervoy (which we already KNOW from the other report does NOT work as well for melanoma patients whether Stage III or Stage IV when used as a single agent compared to anti-PD-1) vs placebo noted in this link: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/06/ive-said-it-before-ill-say-it-again.html You will see that Stage III melanoma patients, even treated only with ipi, had an “overall survival rate of 60% at 7 years”. To be fair the placebo group had an OS of 51.3%. Hell, even I lived as a Stage IIIB melanoma patient for 7 years with no treatment beyond surgery before advancing to Stage IV and am still here after brain and lung mets and my nivo trial and remain NED for melanoma.

        9. Bottom line – comparing apples to apples matters. The amount we have learned about anti-PD-1 since melanoma ratties started taking it in the States in 2009 and after it gained FDA approval for use in melanoma patients in 2014 makes a world of difference to all of us.

        Hope this helps. You and Red here, have every chance of a very long life free of melanoma. Be well. Celeste

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      Bubbles
      Participant
      I am sorry for what you are dealing with, Red. Here is a primer that I put together that covers all current treatments for melanoma: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html

      Hopefully, that will help you in understanding your condition and treatment options. I am not sure about the “three years” and “20%” notation another poster is referencing. However, it is true that before 2011 (9 years ago) NONE of the current effective FDA approved treatments were available. This left melanoma patients with either interferon or IL2 or traditional chemotherapy as their treatment options. Interferon has been found to offer clinically insignificant effect on progression free survival as well as overall survival. IL2 which is incredibly toxic and requires admission to the ICU can produce a complete response in about 5-6% of the patients, with some of those responses being durable (lasting). Targeted therapy (a BRAF/MEK combo), effective only in those who are BRAF positive (something you should have your tumor tested for), can have a response rate of 70-80%. However, for most, the tumor learns to work around the therapy in about 6-9 months – though there are notable exceptions in which the treatment has worked well for many years. The first effective immunotherapy – ‘ipi’ (Ipilimumab – an anti-CTLA-4 product – Yervoy) came on-line in 2011 and when used as a single agent has a response rate of about 15%. It was followed by the advent of both anti-PD-1 products – Nivolumab (‘nivo’ or Opdivo) and Pembrolizumab (‘pembro’ or Keytruda). These are basically identical drugs with similar side effect, response and durability rates. As a single agent in folks with active disease the response rate is around 40%. The side effects are addressed in the post.

      HOWEVER – we have learned that all immunotherapy works best in the presence of the least disease. Therefore, when immunotherapy is used as adjuvant it appears that response rate is greater – esp in patients who are Stage III vs those who were Stage IV and had surgery and/or radiation to remove their tumors before starting immunnotherapy. It has taken a long time for researchers to glean this knowledge, because many Stage III patients do very well for many years with no treatment at all!!! So – you have to follow them for some time to determine their “response rate” to adjuvant therapy. Makes sense right? Still, I – as a stage IIIB melanoma patient in 2003 with no treatment other than observation, progressed to Stage IV with brain and lung mets in 2010 – had them zapped and surgically removed respectively – along with other ratties – joined a Phase 1 trial in 2010. We were placed in 2 groups. Group 1 had active disease. The other group was “NED” like me. We were given nivo as a single agent at varying doses. We all did well!!! And the adjuvant group attained 70-80% progression free survival. Here are some reports on the use of nivo as adjuvant in both Stage III and IV patients: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/09/nivo-better-than-ipi-as-adjuvant.html

      You can use the search bubble at the top left of my blog to learn much more about adjuvant care and other things related to melanoma if you like. I remain NED for melanoma with my last dose of nivo in 2013 and no further treatment. I hope that helps and wish you my best. celeste

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      ed williams
      Participant
      Hi there Redstar.20, here is a link to a recent article written to give a summary of treatments available to melanoma patients along with the history of development based on clinical trial data and breaks down stage 4 versus adjuvant (stage3) research etc etc.https://res.mdpi.com/d_attachment/jcm/jcm-09-00223/article_deploy/jcm-09-00223-v2.pdf

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        ed williams
        Participant
        Here is a link to a second video that features at the 7:30 min mark Dr. Weber then Dr. LOng from Australia talking about patients with history of autoimmune issues and using checkpoint inhibitors in adjuvant and stage 4 setting. You have to join “Research to practice ” to be able to watch video, just paperwork stuff, they don’t bug you afterwards. This video is titled breakfast with the investigators. The rest of the video talks about various melanoma cases and how these experts manage various situations. http://www.researchtopractice.com/ASCOMelanoma19/Video?playlistIndex=0#t=0m0s

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        ed williams
        Participant
        I also came across this on twitter today from Dr. at Gustave Roussy hospital in Paris, it is a study of patients at their hospital over 4 year period that have had Immune check point inhibitors like ipi or nivo or pembro and developed side effects. I don’t have access to the whole article since it is in the “European Journal of Cancer” and I don’t have a membership. If you are interested you could look into getting access. Here are links to hospital and scroll down to March 12 and Dr. Soria’s post about findings from Gustave Roussy Immune Checkpoint inhibitors findings. https://www.ejcancer.com/article/S0959-8049(20)30061-7/fulltext https://twitter.com/GustaveRoussy

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