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Scan Results are in……

Forums General Melanoma Community Scan Results are in……

  • Post
    MarkR
    Participant
      Hi All
      First of all sorry I haven’t managed to reply to all messages – been away on vacation quite a lot recently (just short breaks away) and been busy trying to organise treatment etc.

      Had scans on Monday and results yesterday. It was good news – all tumours have shrunk, including in the brain, and some of the larger tumours in the groin and liver had reduced by up to 85% by volume. Needless to say we were all a bit surprised and such a positive result when success rate is generally about 5%. This makes future decisions even more difficult!!

      I followed up with my consultant about IL2 / Intralesionals and the response was IL2 is possible but I would need to travel to another hospital but comment made why do that now when it is working so effectively….? Hard comment to argue against and the same point made about Intralesionals although that seems more difficult to achieve.

      As you will recall I had been lining up TILS with Israel being the likely best option for me both in terms of cost and travel so I have asked the Professor there for a second opinion. He is well respected and works closely with Prof Rosenberg in Maryland on TILS so should be able to provide good advice. Failing that it will be a consultation with Weber, but at the moment things are going well but I want to be prepared for the next disaster as feel it will only be a matter of time based on past experience.

      All the best
      Mark

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    • Replies
        ed williams
        Participant
          Happy for you, that the scans are positive! Good luck with the second opinions! Best Wishes!!! Ed
            MarkR
            Participant
              Thanks Ed!
              Mark
            AMcReader
            Participant
              So happy to hear about the positive results, but I understand your stress too. Good luck talking through your next steps, you are working with a smart team of people!
                MarkR
                Participant
                  Thanks Amanda – been catching up on your troubles – hope it all works out for you!
                Mark_DC
                Participant
                  Great news Mark! I saw the headline and was hoping for good news, you have had a run of bad luck but the headline was open-ended!!! 🙂
                  Can you remind us which treatment you are now on, and if you have time, more description of the good news???
                  For me I had about 18 months of bad news when Stage III but then TVEC plus pembro started to turn it around. So I hope you have found something that has turned it around too, and maybe others can use too since I think you are in a trial. And I do hope your UK doctors will be more positive – my US doctors are more optimistic or rather more willing to keep trying until they find something that works. So if a treatment only has a 20 percent or 5 percent success rate, then someone will be that 20 or 5 percent; and if that does not work try the next best
                  I really hope this is starting to turn
                  now dont do a Steve Bannon with your fund raiser!!! 🙂 (sorry could not resist, please forgive me!)
                  Mark
                    MarkR
                    Participant
                      Hi Mark
                      I am on Temozolomide which is a chemo that works across the blood / brain barrier. You take it as tablets for 5 nights every 4 weeks and side effects have been limited to tiredness. Supposedly response rate is about 5% and durability may be questionable but I’ll take what I can get at the moment!!

                      You don’t get much detail on the scans in the UK but notes that all tumours have reduced in size including the brain. The biggest liver tumour was 44mm and reduced to 28mm (about 75% volume reduction) and groin lymph node down from 44mm to 21mm (about 85% reduction). It also notes a very good partial response.

                      I am very worried that I have $200k sat in my bank account to pay for treatment that I am probably not going to spend for a little while and I haven’t paid tax on. Need to provide a good update to everyone explaining what has happened and hope they don’t ask for their money back!!

                    gopher38
                    Participant
                      That is excellent news. 85% reduction? I’m no expert, but I think I’d have a celebratory drink and keep doing what you’re doing.
                        MarkR
                        Participant
                          I’ve had quite a few as my daughters birthday yesterday as well!! 🙂
                        jbronicki
                        Participant
                          That is the best news Mark! So glad you are seeing such reduction and I know you are also contingency planning which never hurts but hope you don’t need it. I follow dr. Rosenberg’s research, glad you have an associated contact in israel. You’ll get to Texas one day, but it will be for the longhorns and rodeo only!
                            MarkR
                            Participant
                              Texas is rapidly moving up my bucket list with comments like that – would love to go to a rodeo and can only imagine the steaks!!
                            Bubbles
                            Participant
                              So glad that you are having a response to Temodar, Mark! That is wonderful news. As is the possibility of a TIL’s program and consult with its researcher. I still encourage a consult with Dr. Weber. He could give you good recommendations for next steps should you need them. After all, the best advocate for your care it YOU! Fingers and toes crossed that your current response continues!!! Should you be interested, I did recently put this report up re TIL’s: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2020/08/til-act-for-melanoma-patients-past-and.html

                              I wish you my best. celeste

                                Mark_DC
                                Participant
                                  Mark — I would definitely go with Celeste’s advice, and now seems the right time for a consult.

                                  Your results are excellent (finally!) and yes the volume reductions are probably pretty big as you mention, which is wonderful. I dont know the treatment and you raise some doubts about it (being British I guess this is natural!): someone like Weber could guide you on this, whether you might get a complete response or not, risk of relapse all these kinds of things. Now you have some breathing space, he can give you his assessment and his knowledge of how this drug works. He can also outline possible next steps and recommend places where you can be treated. Again, simply because of the cost (not to mention the airfare plus covid restrictions), I would be inclined to work with a European specialist (maybe Israel too), and Weber might be able to recommend someone.

                                  In the US we have the opposite problem – we almost always get our scan results and many of us get them before seeing the doctor (I wait until I see the doctor, I dont open ahead of time). I think its important before talking w Weber that you document your history as best you can. Also that you send the scan results – you need to ask for these. He may even want to see the scans themselves but for now at least the reports. I also think that since now you have good results, this should be a great time to put all this material together. I would then think an initial consult to assess where you are, with a follow up consult(s) if things change.

                                  Dont worry about the fundraiser but I like it that you are British so feel bad about this. I would too, even though its not warranted. Talking with Weber and getting his assessment could also help you with putting the right message out to those who donated. You could explain the good news, that this was maybe a 5 percent chance, what the risks and next steps are etc etc. The Weber consult, aside from you needing it, could also help with this!

                                  The numbers seem good and its great that a longshot is working out, its something the rest of us may need too if we progresss. Your news cheered me up yesterday (also a friend of mine who I shared with). But I do strongly encourage you to follow Celeste’s advice, make the appointment, and then put together and send ahead of time (a week ahead?) all this info to make the best of your consult.

                                  Hope you had a few drinks and perhaps a few prayers too (I rely on both!)
                                  Good luck, Mark

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