MRF-Logo2019-Horizontal-RGB
Shalom
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.

Shalom

› Forums › General Melanoma Community › Shalom

  • Post
    • October 8, 2020 at 4:35 pm
    MarkR
    Participant
      Hi All
      Been meaning to do an update on progress but it has been a little hectic of late.
      After the Brain Mets diagnosis accompanied with the 3-6 month prognosis they gave me SRS to the 14 brain mets and started me on Temozolomide. The first scans were encouraging which showed a good partial response and then I had a follow up MRI and PET scan 4 weeks later that showed a continuing response, but a bit slower this time. All good news but they keep telling me the chemo is only likely to work in the short term.

      As you know I was looking extensively at TIL and had narrowed my hospital choices down to the Sheba Medical Centre in Tel Aviv, Israel. I flew out here last week and met with Dr Nathanel Asher who runs their TIL program and he gave me three potential options – TILS, a Micro Biome trial (making use of the gut bacteria from good responders to immunotherapy) and a new trial they have that is similar to kidney dialysis. Essentially they remove a blocker from the blood that improves the immune systems effectiveness against tumours. Not all of these are currently open to Non-Israelis and his view was that as the chemo was working so well for me to stay on that for now. I have chosen to progress with TILS for now and had surgery out here on Tuesday to remove a lymph node from the groin for TIL harvesting. I am still out here in a very nice beachside apartment waiting for them to confirm the sample is OK before I fly back home to the UK. When I return i will have 6 weekly scans to closely monitor progress and as and when things deteriorate I can come back for either the Micro Biome trial or to complete my TILS. Dr Ashers view is to try the Micro Biome trial first and if that isn’t successful go for the TILS then. Unfortunately I have to pay for all of this so we will see how far the money will stretch. The TILS program is about $120k and I have just paid $10k for the surgery so am hoping those TIL cells are viable!!!

      The Micro Biome trial has shown an ORR of 30% in a phase 1 trial, but it means fortnightly visits to Israel to take tablets and have Nivolumab infusions. I think it is going to be too expensive for me to be honest as Nivolumab is so expensive. Will keep you updated on progress

      Hope everyone is keeping well
      Best Wishes
      Mark

    Viewing 1 reply thread
    • Replies
        • October 8, 2020 at 5:29 pm
        gopher38
        Participant
          Wow. That’s a lot of news. Thanks for all the info; it will be useful for others down the road, I’m sure. I’m trying to stock all I hear about TILS somewhere in my brain for the future reference. Good to get the logistical details (like costs) also, to keep things real. Thanks and I also hope your TIL cells are champions.
          • October 10, 2020 at 12:29 am
          Bubbles
          Participant
            Fingers and toes all crossed for you, Mark. Celeste
        Viewing 1 reply thread
        • 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.