Home Forums Melanoma Diagnosis: Stage IV Lori and Tils treatment

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  • #22477
    Gilly
    Participant

    Lori is a stage 4 patient in UK – she has been a fabulous patient advocate and I am sure you will have seen her excellent youtube video on “suffering Clinical trials” :

    https://www.youtube.com/watch?v=H03vz24JhgM

    Having failed Keytruda – Lori has been offered the chance of Tils in Manchester – unfortunately though the facilities and expertise are ready and waiting – the funding has not been agreed so Lori is trying to sell her family home to raise the money – but she has 12 days before her window of opportunity passes – there is a campaign of action to a) raise money for her treatment and b) petition the National Health Reimbursement to pay for TILs. WE know it works durably for some patients and bizarrely it is cheaper than the anti PD1s – this is a ridiculous state of affairs … Please read the details and help if you can – the action will help all melanoma patients to have another option ..

    https://www.change.org/p/nhs-england-meet-excess-treatment-costs-for-clinical-trials?recruiter=65403466&utm_source=share_petition&utm_medium=facebook&utm_campaign=autopublish&utm_term=mob-xs-share_petition-no_msg

    http://www.youcaring.com/medical-fundraiser/help-lori-murdock-live/344548?fb_action_ids=10206672713527501&fb_action_types=og.comments

    #67064
    Catherine Poole
    Keymaster

    I’m so sorry to hear the PD1 didn’t work for Lori. But I do have to add that we don’t know that TILS works and is durable. In fact, we have not seen it in a randomized trial against other approved agents. I am sure the govt, yours and ours won’t approve this therapy until it is found to be effective in a good number of patients. Not too long ago we lost one of the most precious of advocates, Patricia Garcia who also was led to the TILs as she too failed PD1. I wonder if Lori can’t seek out alternative proven therapies than this one that is so costly and not yet proven?

    #67065
    Gilly
    Participant

    Tils has worked for some people – we had at least two present at the Brussels conference and we know when we have reached the end of standard treatments most of us, if we are well enough, will try the next thing ! Sadly many stage 4 patients dont have the luxury of time – these trials are going on both as Tils and Dendritic cell, but they have an age limit of 50 – Pati had the same wish to try this option. This is the risk of NOT taking risks in Melanoma – the title of the MelanomaPatientsNetworkEurope conference last week – Patients want to make the informed decision about what risk they take …

    #67066
    Catherine Poole
    Keymaster

    Oh I agree, and we have many brave patients taking these risks daily. Even the approved drugs that have been through rigorous clinical testing throw a curve ball to patients. I know our scientific board is not sold on TILs and I have to go along with their expertise on this. According to Keith Flaherty, MD who is director of Targeted Therapies at Harvard/Mass General: “The balance of efficacy and safety has not been established to consider the TIL therapy as an option in relation to immunotherapies and targeted therapies. Clinical trials, randomized to other therapies are lacking. It is unclear whether TIL will be brought forward for consideration by regulatory agencies.” So I am hoping Lori is seeking out some other trials and combos. Is she BRAF positive? Here is an interesting study others have mentioned here with the Pan-Raf inhibitor, recruiting in London: https://clinicaltrials.gov/ct2/show/NCT01425008?term=melanoma+london&rank=63

    #67067
    Gilly
    Participant

    Thanks Catherine – she has been told this is her last chance – she is Braf -ve and has “done” everything else – she has a great team and they are behind her ..

    #67068
    Pieter
    Participant

    Hi,

    I have just finished a TIL treatment, but unfortunately the scan taken after 12 weeks showed a significant grow. I have also failed PD-1, Ipi and Dtic. The only medication that worked for me was the MEK162, all the tumor cells dissapeared. Unfortunately it stopped working after 10 months and the tumor were coming back. I have tried to get on MEK162 again as I think (hope) it will work again after 2 years. But unfortunately it is a not an approved drug and I can’t try it again. 😥 Now my only hope is another trial called TCR. I am waiting to get approval. I have all the pre-requisites but because of health issues with one of the first patient I have to wait for the results (site effects) of the patient now in this trial.

    The TIL study I had, was not really an impact. every 3 weeks I got back the grown T-cells and I had to take every day an injection of Interferon. In my case I had almost no side effects.

    #67069
    Catherine Poole
    Keymaster

    Hi Pieter,

    I’m sorry to hear of all the challenges you have faced so far. You sound very strong and a good advocate for yourself. Can you tell us more about that trial? And where are you getting your therapy?

    #67070
    dodo
    Participant

    Hi Peter,

    I am very sorry to heard about your bad experience with TIL. Doctor has just recommended me to try TIL and i try to find more information about this therapy. I have tried Multiferon, IPI and PD1. Only PD1 was effective during first weeks, but than scan showed the progression.

    I have never heard about MEK162. I am also searching information about financing TIL somewhere.

    If you have any information please let me know.

    Thank you in advance,

    dodo.

    #67071
    Catherine Poole
    Keymaster

    Dodo,

    Are you BRAF negative? Then you could be NRAS positive, whereas, the MEK drugs could be helpful. Where are you located?

    #67072
    tabitha
    Participant

    Please sign this petition for all the Melanoma and Cancer patients in the U.K. My relative recently passed away from Melanoma and was in the same position as Lori, he was being treated at the Christie Cancer Hospital in Manchester and TIL treatment may have been an option, they have the facilities, but the funding was not there. Who knows, it may have saved his life?

    Thankyou

    #67073
    dodo
    Participant

    Dear Catherine,

    Unfortunatelly i am BRAF negative. I am from Georgia (Republic). At this moment Israel is waiting for my decision regarding TIL.

    Dodo

    #67074
    dodo
    Participant

    Hello,

    Does anyone have information about what TIL Therapy costs in the United States? This information is very important and urgent for me. If you have it please share ASAP.

    Thank you in advance,

    Dodo

    #67075
    Catherine Poole
    Keymaster

    I believe there are two institutions doing TIL outside of NIH. NIH/NCI has stopped taking international patients last I heard, but you may want to contact them since they have the best results. (1-800-4-cancer) cancer.gov. I’ve heard MD Anderson and Moffitt are doing TIL but you would have to call them to get their prices. It is very high from what I understand. You can find their contact in our resources list above. The Netherlands was doing TIL but may no longer, also quite a high price. Check back to posts by Hein for that info. Hope this helps you.

    #67076
    Hein
    Participant

    Actually the Netherlands Cancer Institute / Antonie van Leeuwenhoek in Amsterdam is having a trial going on at the moment comparing TIL against Yervoy. The Danish Cancer Institute is also participating in this trial. But both centres in general only accept national residents for the trial as far as I know.

    Costs of a TIL-treatment in the Netherlands is around € 70.000,-, in Great Britain around GBP 70.000,-.

    A TCR-trial is upcoming at the DCI AvL.

    I will be at DCI AvL June 22th for 6-months checkup and will ask for the latest developments/news. I will get back on this blog with the answers.

    Hein

    #67077
    Hein
    Participant

    Some facts and figures about the ongoing TIL-against-Yervoy phaseIIItrial in Europe.

    The trial is a joint trial done at & by Netherlands Cancer Institute/AvL, University Kopenhagen and University Manchester.

    In total max. 162 avialable spots (50% TIL-arm, 50% Yervoy-arm) of which 60 spots avialable in the Netherlands and the rest in Denmark and Great Britain. Nonresponders to the TIL will additionally crossover to Yervoy.

    As of July 1st the Dutch part of the trial is financially fully covered by the Dutch National Health Insurance, at least for the next 4 years. Cost for one TIL in the Netherlands € 40.000 – € 45.000.

    Worldwide there are upto now 400+ melanomapatients who have been treated with TIL of which 50% had a positive respons and about 20% even a complete remission.

    I’ll get back after June 22th with some more info after I have spoken to prof Haanen.

    Hein

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