Looks like the end of my brief dabble with NED!
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Looks like the end of my brief dabble with NED!

› Forums › General Melanoma Community › Looks like the end of my brief dabble with NED!

  • Post
    • February 12, 2019 at 8:27 pm
    MarkR
    Participant

    Went for my routine scans having had surgery to remove the lump from my arm in January.  

    The good news is there is nothing new, the not so good news is that some lung nodules that have been there for some time have been very slowly growing over the last year.  They have been largely ignored until now as too small to worry about.  Apparently looking back over previous CT’s the most one has grown is 5mm, the largest is 1.5cm and when I asked how many there were the response was ‘I would need to count them’ 🙁

    Oncologist thinks they are likely Melanoma but is going to discuss this further with the radiologist to take a view, but I suspect the writing is on the wall.

    I discussed a return to Nivo maintenance and the oncologist isn’t convinced this is the best option and is talking clinical trials.  The lump from my arm is being tested for various markers and if they believe it is Melanoma they will look at the various options and make their suggestions on best course of action.  I really was hoping for at least a short period of NED so am pretty deflated at both this new issue and having seemingly failed Ipi/Nivo.  

    Being Braf Wild Type my options appear to be limited and I am starting to research trials, but any knowledge of successful trials would be very much appreciated.

    thanks

    Mark

Viewing 2 reply threads
  • Replies
      • February 13, 2019 at 1:24 pm
      Bubbles
      Participant

      Sorry for the unfortunate news.  I know many who, despite progression, have found success when returning to either anti-PD1 product as a single agent, esp after having surgery or radiation to decrease their tumor burden.  That said, clinical trials and tumor testing are important paths to effective treatment as well.  I wouldn't go too long with NO treatment, however!  I am sure you and your docs will work out a treatment plan soon.  I wish you my best.  Celeste

        • February 13, 2019 at 8:49 pm
        MarkR
        Participant

        Thanks for the positivity Celeste

        My Onc is going to discuss with the radiologist on Monday and then work out options from there.  I’m going skiing with the family in Austria next week so they should have a plan for me when I get back.

        i’ve been looking at UK trials today and they are mainly Nivo + Another including Anti Lag 3, NKTR-214, Spartizilumumab or IMM-101.  NKTR and IMM are reporting 60% response rates for pretreated patients so I am a bit more optimistic

        thanks

        mark

      • February 13, 2019 at 10:37 pm
      GeoTony
      Participant

      Hi Mark

      I was just looking at IMM-101, sad to admit but I still surf the DM from here in Canada and they had a recent sucess story.

      Looks like an interesting option, particulary the minimal side effects and the theoretical process of firing up cold tumours to allow the PD-1 to work.

      Good luck

       

      Tony

        • February 13, 2019 at 10:49 pm
        MarkR
        Participant

        Hi Tony

        I was reading your progress the other day – have you managed to get into a trial yet?

        Ive been doing more reading this evening and wish I hadn’t.  Lag3 doesn’t look that promising and NKTR seems to have stalled a bit.  Don’t know which option the Onc will suggest but hoping it’s a good one.  I still feel I was taken off Nivo too quickly and didn’t get  along enough run beating in mind I initially had shrinkage and then stable disease, but I guess it’s too late to look backwards

        hope all is going well

        Mark

        • February 15, 2019 at 5:40 pm
        GeoTony
        Participant

        Hi Mark,

        My appointment with the study team was Monday, but it was cancelled because of the weather, it dumped 3ft of snow here this week and this end of Canada is not set up for winter, re booked for the 25th, I'll let you know how it goes

        Tony

      • February 15, 2019 at 2:39 am
      sing123
      Participant

      Mark, it is so easy to get deflated in this rocky melanoma world. Hope you can get some good news soon (either that it is not melanoma or that the docs have a good path for treatment). Hang in there and keep us posted.

Viewing 2 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

Popular Topics