Home Forums Melanoma Diagnosis: Stage IV TIL accounts

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  • #20928
    pati
    Participant

    So, as have reached this option seriously I have read amazing accounts from Hein and Jamie etc…Hein’s is the most relevant as I would be doing his exact same protocol but still the hardest part in this TIL thing is the IL-2, jamie is brave but her account in the blog made me quite scared.

    Though at this stage I am doing all my next choice for the love of my children, the 6 year old told me today “if I do not grow up I will always have a mum so I have decided not to grow up”….My heart ached as I also thought if time could stay still…I watch them and just drink their souls see how truly wonderful it is to be a child,

    So I am really hoping this becomes a real opportunity, waiting for an appointment anyday now. I liked Weber seminar but was disappointed to see no discussion of risks and toxicities and how these are dealt with. A while ago I had seen the blog of a woman who went through till and drafted a note of “how to prepare and things to take to hospital” but I cannot find it.

    I am working inner strength too to do to this with eyes wide open and allowing for good outcomes which is funny but in the past I think I entered many if not most trials (including anti-PD1) out of fear. Do you know what I mean…this time it’s like I am going to be riding dragons but I feel ready.

    Any TIL info is welcome, I keep you posted too…

    Zelbo being good to me for now, as meditation and food and yoga and love and life and acceptance of death as normal…all is bundled up.

    P

    #58523
    Catherine Poole
    Keymaster

    I agree that the webinar sort of glossed over the side effects and harshness of this therapy. We also don’t have great numbers of trials to tell us what the results truly are looking like. I wonder where it leaves people if they don’t respond. So there are no true answers yet, I think it has to be a gut feeling with research. Happy you are blessed with your children daily to enjoy and the Z is working.

    #58524
    pati
    Participant

    Indeed I have a read an article (atually translated to me from dutch) when Prof Haanen explains that in the NL they will conduct the first randomized trial on TIL to exactly deal with this since it has never been done before. And that indeed if this is a real option for patients then the time has come to compare to other options…if I understood correctly Hein was part of the n=5 pilot the regulatory in NL asked and he has decided to open 2 slots for people like me who cannot participate in other trials because of the many priors. So the slot I might have is somewhat part of the pilot I guess to explore what happens to queens and kings of “priors”.

    Just ate a wonderful perfect croissant…and fresh orange juice done by my husband and fruit salad AND the sun is shinning in Brussels (there has been no sun for a month it feels) plus we are having a delicious tomato fondue (with special swiss imported cheese) tonight…so I am off to a walk to make some space.

    P

    #58525
    Gilly
    Participant

    Hi Pati – there is a blog on the mymalignantmelanoma.com under Sarah’s story which concerns Pete’s Tils – she is mostly on the Melanoma facebook forum but she is such a huge help there, that i’m sure she wouldnt mind giving you some views. I will PM her and she may come and reply. All the best to all of you xx

    #58526
    lak1
    Participant

    Whats happening re TIL how much of the treatment will you have to fund yourself?

    I remain well but ever realistic that this is temporary but to be enjoyed.

    Lesley

    #58527
    pati
    Participant

    I was told I would need to raise about 20-25 K Euros, the research lab would take the remaining 20,K to grow the tils…of course dutch patients like Hein are entirely covered by insurance. In the Uk I would have to raise the WHOLE amount….

    P

    #58528
    Catherine Poole
    Keymaster

    It is a very expensive procedure indeed! I know that some doctors have raised this issue about it and how practical it can be. It is free at the National Cancer Institute here in the U.S. but there are very selective in who they take as patients and would mean travel and staying far from home.

    #58529
    pati
    Participant

    At this stage my colleagues/family and friends are ready to support me with this cost so I am lucky this will not be an issue for me, the amazing thing about price is that we should not forget how much the other drugs are still priced (120K yervoy and almost as much for zelbo), so all remains pricy, the fact you can have this without cost in US is actually quite good, same for dutch patients, I am not sure about UK patients.

    Will keep you all posted. I know the price for dendritic cell vaccination is also about 20K.

    P

    #58530
    Hein
    Participant

    Pati is right about the costs: TIL is still much cheaper compared to Yervoy and the succesrate is higher.

    Here in Holland there were 5 patients who did the TIL. Me and one other patient had complete respons, two patients had a stand-still (of which one a few months later died of braintumors) and one patient did not respond. Allthough this is a better result than in America en Israel (30% complete and 20% partial response), these numbers are not statistictly representative .

    I am still doing fine at the moment. I go for my next check-up tomorrow. I will ask my prof about the latest developments and statistics.

    Hein

    #58531
    Catherine Poole
    Keymaster

    I have not seen the response rate for a large number of TIL patients and that is what I’d like to see. I think we have settled on 20% for Yervoy after a large study. Yes that drug is costly, but it is outpatient. For TIL the cost is not just the drugs and labor intensive process, but the hospitalization (Intensive care unit) etc. I would love to see a good sample and then I would be more supportive of it. But for now we just don’t have the numbers to prove its efficacy. I want to be a believer!

    #58532
    Hein
    Participant

    I had my check-up yesterday. Everything is still fine and no signs of any canceractivity in any way. Next check-up in 4 months.

    I asked my prof for some info. According to him:

    – total costs of TIL in Holland, hospitalisation included: € 50.000,-

    – side effects: the regular side effects of the chemo in the first week. IL2 on itself has no damaging side effects on organs, as it is processed by the body within the 8 hours timeslot in between the infusions.

    – damage to organs: these are side effects of radiation. In Holland radiation is no part of the TIL-treatment.

    Hein

    #58533
    woollie48
    Participant

    We are another positive result for this treatment , over in uk.It was funded for us and I was told there was about a 50% response rate with half of those getting a long term response.

    Oddly here I am having more problems getting funding for home adaptions , son has paraplegia then we did for drugs surgery or this treatment ! S

    Oh and hein radiation was not part of TILs it was something son had to have to mediasternum mets in order to live long enough to benefit from TILs.

    #58534
    Hein
    Participant

    Hi Woollie,

    Sorry for the misunderstanding I created but, as we were in contact during your son’s treatment, I know he did not have radiation. My prof (and I) meant some of the TIL’s being done in the US. Some of those contain(ed) radiation as a part of the procedure. But with the TIL’s so far done in Amsterdam and in Manchester, radiation is no part of the procedure, and according to his reaction, will never be one.

    Radiation during the TIL is, according to my prof, the main reason for the often stated side effects to organs and not the IL2 or the chemo’s.

    Hein

    #58535
    Anonymous
    Guest

    When our onc was trying to get Rachel into the NIH/NCI TIL program, his take, based on the data he’s seen, were response rates north of ~70% and complete responses rates of 25-30%. I’m not sure what they’re combining TIL with (like IL-2) but I think I recall seeing IPI and PD-1 arms, but I could easily be wrong.

    The director of a local organization here in southwest Ohio, Melanomaknowmore, is a TIL complete responder from, I believe, 2006. It almost killed her though. Like Catherine and others have said before and we experienced directly, the NIH/NCI TIL program IS extremely selective in who they accept for, as I understand it, safety and maximum efficacy reasons. It is a very resource intensive procedure.

    Jeff

    #58536
    jgoldfarb
    Participant

    Pati, do not be afraid of IL-2! Especially as a part of TIL. It is unpleasent to say the least, yes, but it doesn’t last very long and then it is over (and very worth it). Also, my accounts of IL-2 were as a stand-alone treatment. My understanding from a number of patients and my NCI doctors is that IL-2 as part of TIL is much more manageable because at the time you receive IL-2, you do not have much of an immune system to respond to it. Therefore the side effects are fewer and less than when you receive IL-2 as a stand-alone treatment. Don’t let IL-2 weigh into your decision about TIL. It only lasts a few days and you recover almost immediately (from the IL-2 portion). I am glad you are seriously considering TIL. It is saving my life and here’s sending all my hope that it saves yours too. Stay strong! If you have any questions about IL-2 or TIL, please feel free to email me any time.

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