Stable Disease
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Stable Disease

› Forums › General Melanoma Community › Stable Disease

  • Post
    • October 27, 2018 at 5:30 am
    MarkR
    Participant

    Hi All

    Looking for some info on those of you that had partial response to Ipi/Nivo.  After a rocky road with side effects I’m off treatment and on to watch and wait.  Unfortunately (or fortunately depending on how you look at it) I can feel the lump daily in my arm and while I had an initial reduction it’s either stable or maybe a small reduction since my last scan.  At this stage CR looks unlikely so looking to hear from other partial responders on their experiences.

    cheers

    mark

Viewing 5 reply threads
  • Replies
      • October 27, 2018 at 12:18 pm
      MichelleRHG
      Participant
      Can the lump be removed surgically?
        • October 27, 2018 at 3:15 pm
        ed williams
        Participant

        Michelle stole my thought, 'when in doubt, cut it out"

        • October 27, 2018 at 3:15 pm
        ed williams
        Participant

        Michelle stole my thought, 'when in doubt, cut it out"

        • October 28, 2018 at 6:47 am
        MarkR
        Participant

        It seems to fall into the doable but difficult box.   

        It is close to and most likely attached to one of the main nerves in my arm so surgery comes with the risk of partial paralysis.  The Drs view is to avoid surgery and go with systemic therapy to stop the recurrences and minimise surgical risk.  It is something I’m keen to talk to them about more though

      • October 27, 2018 at 6:03 pm
      Bubbles
      Participant

      Surgery sounds reasonable…or at least biopsy.  Could be viable melanoma or dead tissue and debris.  If it is viable…and cutaneously accessible…..I would think about intralesionals….like PV-10 or T-VEC if you don't want to do surgery.  Folks here have used intralesionals and there is a great deal of info about them on my blog.  If you are interested just use the search bubble.  I wish you my best.  Celeste

      • October 27, 2018 at 6:58 pm
      MelanomaMike
      Participant
      Hi Mark, i believe we met a week or two ago, good to see you back & posting your current situation. I to had a Bitter Sweet run while on the ol’ ipi & nivo wagon, most of my lung tumors did NOT grow (didnt do anything them lazy bastards!) But ill take that as VICTORIOUS!..Also, one tumor in my Left Lung did Shrink though from 2.4cm down to 0.9cm (yaay Victory!) And, like folks here already know, in my Right Lower Lobe (of right lung) there resides a 5.4cm Melanoma Monster (was
      like 3.2cm somewhere around there, kinda forgot! Before ipi/nivo),that has “defied” all Immunal Therapies since iv started back in Nov 2017 (Keytruda) and grows in leaps & bounds! But, our new WarPlan is for Surgery to take his ass out on Nov 12th (2018) & like i am now, i will continue the Opdivo till further notice…Look for a member here named TexMelanomex and read his old post from earlier this year, his tumor was accessible in his neck & like Bubbles touched on, PV-10 Blasted that sucker to NED dome!…look into it brother…take care man..
      • October 27, 2018 at 7:26 pm
      Mark_DC
      Participant

      Hi Mark,

      I was partial response while on pembro for one year – one tumour dissolved, the other grew slowly, so that at each MRI it barely grew but cumulatively it was growing quite a bit. But no spread fortunately. 

      After one year we were going to go for surgery (had not worked in the past since kept returning) and maybe 12 weeks off work (have to undo a skin graft and put in a flap whatever that is). Instead after a second opinion we went for TVEC plus pembro. Insurance company approved, then rejected then approved again. I dont want to jinx it, but this seems to be working. Other intralesionals might be better like PV-10 (texmelanomex) or SD-101 (seen papers on it but not sure anyone on this board using it). I like the idea of intralesional for partial responders since it seems the immunotherapy is doing something but not enough. Maybe the intralesional helps it. I was glad to do TVEC plus pembro rather than just TVEC alone.

      And with TVEC my tumour is ultrasounded every two weeks so I see the damn thing in real time. Scary at first when it was growing (but at least you could keep an eye on it!), easier now its shrinking (I would love to compare the photos now with the early ones).

      So surgery or intralesional seem good options imho

      good luck Mark

      • October 28, 2018 at 6:41 am
      MarkR
      Participant

      Wow – thanks so much for all the responses!!

      To clarify I had 3 recurrences in my arm in 14 months with the last growing to 4cm in 4 months.  The Drs view was to switch to systemic treatment from surgery as it just kept coming back.  At the time Ipi/Nivo had not been approved in the adjuvant setting in the UK so it was either surgery or Ipi/Nivo not both.  I’m also Braf wild type so my options are more limited

      In terms of sizing my last CT was Sept and my next is Dec but as I said I can feel it and my gut says stable in size with heart saying it might have shrunk a bit.

      Im going to look into TVEC some more as I see it is approved in the UK and undertaken at the Royal Marsden where I am treated so hopefully that is a future option.

      thanks again all and best of luck to you all!!

      mark

        • October 28, 2018 at 6:43 am
        MarkR
        Participant

        Sorry missed the comments on PV10 so will look into that as well!!

        • October 29, 2018 at 2:36 am
        Mark_DC
        Participant

        Hi Mark,

        I think I had a similar experience to you – two leg surgeries and tumours kept coming back (not too many) so rather than a difficult third surgery my doctors opted for immunotherapy (pembro) as something systemic (i had tried ipi before but side effects). Also same name smiley and no braf!

        i wenr off pembro becuauss of side effects but then went back on; after about one year of stable disease we went for tvec plus pembro but we were going to try surgery

        i think my question for you is why cant you go back on treatment? Maybe its the ipi thats the problem. You could go back on nivo alone especially if you think it is slowly working or giving stability.

        i am british but live in the us and am quite intrigued by standard of care in the nhs (because one day i would like to come back to the uk but i am fearing this is not a good idea), the few uk members seem to be taken off treatment quite quickly if there are side effects. You might be abke to go back to nivo alone and see how that works. Then if scans show progression then go for the other options (assuming they are available in the uk). I would be reluctant to do tvec alone in case it does not work and you lose the systemic therapy. In my case i was able to do both tvec and pembro, i didnt want to lose the pembro.

        i know royal marsden is good but am wondering why you cant go back to nivo alone if your side effects subside especiallt after taking prdnisone if necessary to get rid of side effects. 

        Do keep us updated as i am very keen to learn more about tratment options in the UK

        good luck Mark

        • October 29, 2018 at 6:35 am
        MarkR
        Participant

        Hi Mark

        thanks for response interesting that you are wild type as well but have been in Pembro as I thought that was braf mutant only…..?

        in terms of why I was taken off treatment – under NHS guidelines – if you are off treatment to deal with adverse effects for more than 3 months you can’t go back onto treatment again.  However I do have Bupa private healthcare that would cover it, but advice from the team is to move back to surveillance.  

        Their view is that they have many patients who have initially responded to treatment, but also with significant side effects, and who have gone on to require no further treatment.  Essentially they think I could go on with no more treatment and be fine.  

        As a result they think we should keep Ipi / Nivo in reserve and wait and see what happens.  The trouble is I’m not very patient and go through periods (like now) of stressing myself out as I can feel the lump constantly and it becomes quite hard to ignore.

        i have my next scan in December and guess I need to just wait and see what’s happening and then start asking the questions as to whether we can introduce TVEC or maybe surgery if response stalls as I fear.

        glad to hear you are doing well on other options – if you do come back to the UK I would recommend bringing your medical insurance back with you to give better access to treatment.  That being said I have been treated under Bupa in the UK and the standard of care at the Marsden is the same if not better – it really is that impressive!!

        cheers

        mark

        • November 1, 2018 at 2:06 am
        Mark_DC
        Participant

        Hi Mark

        sorry i missed your reply. Its interesting!

        first off, pembro is similar to nivo and you can be braf wild type for these (and other immunotherapies).

        on not being able to go back on treatment, i find that odd. I think in the states the idea is you go back on treatment once the side effects are contained. But you may only be able to try this a couple of times then you are off for good. In my case i came off, took steroids, was allowed back on and stayed on – the bad liver numbers did not recur. The UK three month and you are out restriction seems strange to me. But I am not expert, unlike others on the board.

        on feeling the lump constantly, well i had the same experience two years ago. I was freaked out as i could feel the small tumour on my leg growing. But that turned out to be good news as it then burst and disappeared. Unfortunately the other one which grew only slowly has been more persistent, tvec seems to be helping shrink it. I woUld say try to hope for the best.

        its great you can get to the royal marsden (is this because you live in lonodon, would it be tricky otherwise?) but based on other experiences on this board, although i believe in the NHS i do worry it lacks resources and maybe holding back from treatments that the USoffers. So while the US system has huge problems and the prices are impossible, it may be saving my life. 

        Keep reading the board to learn more about the options, maybe clinical trials too, so that you are well informed when you see your doctors

        good luck from a fellow Mark

      • October 28, 2018 at 9:51 pm
      Edwin
      Participant

      Ipi/nivo immunotherapy has given me more than 2 years of good health after melanoma in many bones. I still receive nivo every 2 weeks. My April and September PET scans showed a tumor under my left jaw. It grew from 0.6 centimeter in April to 1.1 centimeter in September.  This growth could be radiation related; I received radiation to it in May and June. Since I do not notice this tumor, I consider my health to be good.  I hope my next PET scan shows this tumor to be stable or shrinking.

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