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MarkR

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      MarkR
      Participant
        Terrible news that we have lost another and someone that for some time was the heart and soul of this forum.  He was good humoured and made so many entertaining posts when he was struggling through so much.  He will be sorely missed
        MarkR
        Participant
          Hey Mike
          Long time no speak – so sorry to hear this news and hoping and praying things work out for you. You have had the toughest ride of anyone I know and I hope they can deal with your pain for you.

          You have always been a bright light on this forum and I hope you continue to be so.
          All my best
          Mark

          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!!
            MarkR
            Participant
              I’ve had quite a few as my daughters birthday yesterday as well!! 🙂
              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!!

                MarkR
                Participant
                  Thanks Amanda – been catching up on your troubles – hope it all works out for you!
                  MarkR
                  Participant
                    Thanks Ed!
                    Mark
                    MarkR
                    Participant
                      I love BBQs and Texas has to be the king of BBQ states – just purchased my latest Weber cook book ready to try a few more recipes!!
                      MarkR
                      Participant
                        Hi Cindy
                        Thanks for this – can I ask if you paid – I just feel a bit cheeky ringing some chap out of the blue and asking his opinion!!
                        Thanks
                        Mark
                        MarkR
                        Participant
                          Thanks Warren – my team think TILS is probably the best option, but I will be interesting to see their views after my scans and will report back!

                          I have been to Colorado skiing and it is utterly stunning. Israel is an unknown for me and my only experience is the news which is rarely positive so its good to hear from someone that has been there. Will keep pushing on and hopefully something will do the job for me
                          Cheers
                          Mark

                          MarkR
                          Participant
                            Thanks Mark – appreciate the advice and my Dr has warned me off the US for treatment and I am only exploring trials at the moment as I don’t think my $200k will last very long on active treatment. I hope to have these costs soon so that i can see whether this is an option or not. I am very concerned about becoming ill in the US or severe side effects that result in huge medical bills and losing my house etc.

                            From what I have been reading and with everyone’s input it seems adding something else to the Chemo might be a good alternative to TILS so will chat with the team about it and see what happens. I’m not optimistic as I feel i have been written off and am in the waiting to die camp from their perspective. As i still feel completely normal its hard to take so will keep pushing them. Working on their initial assessment they said i could be dead by now, but I’m not and i intend to stay that way!!

                            I have some potential options in Europe and hope that they come through as i think they would be the best option for me and its easy to get me home if it goes wrong!!

                            MarkR
                            Participant
                              Hi Bubbles
                              Thanks for your thoughts on this – I’m at the stage where its all a little complicated and in the UK we seem to be more risk averse than the US, which is a bit odd given we don’t have such a strong litigation culture; although the medical services are run by the Government!!

                              1. I do have some accessible for intralesionals but wasn’t aware there was much evidence to support this – have latest scan results and appointment with Onc next week so will ask
                              2. I did ask about this, but the response from my team was a bit limited along the lines ‘we don’t really do that’ but its something I can push again
                              3. Thanks for the info
                              4. While researching effects of Temozolomide I did find a paper that an enhanced response can be achieved combining Temo with IL-2 – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2377058/. Again i will raise this with the team and see if i can persuade them to be a bit braver
                              5. Thanks I will contact Weber, but will wait until I have my latest results next week as it seems they all want to know if the brain is stable and hopefully i can tell them it is!! I was a bit disappointed with MDA – I know US medical costs can be high but this seems excessive. A number of other US hospitals are reviewing my case for free

                              Will be in touch again when we have the latest and can go from there – will be interested to see what my team say after my next round of results
                              Thanks
                              mark

                              MarkR
                              Participant
                                I found these after changing search criteria and the first one is quite an interesting one from Israel

                                https://www.frontiersin.org/articles/10.3389/fonc.2020.00070/full
                                https://pubmed.ncbi.nlm.nih.gov/29207685/

                                MarkR
                                Participant
                                  Thanks Ed – had a watch and very interesting. Using this and Bubbles post I managed to find a few more examples and there is some promise to this area it seems.
                                  MarkR
                                  Participant
                                    Sorry Chip – it was someone else’s account not mine but I understand the person is currently doing well
                                    Cheers
                                    Mark
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