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February 15, 2014 at 9:41 pm #21802wowistaParticipant
Is there anyone aware of TIL treatment available to melanoma stage IV patients in Canada at this time? My sister has tried most other options and nothing else has helped, TIL seems to have had some success in the USA, Israel and Germany. We are also willing to travel to the states, but are on a limited income. Also, does anyone know of any other trials available right now for stage iv?
Thank you all for your help and adviceFebruary 15, 2014 at 9:48 pm #63564MathewRParticipant
Google for the blog “My Melanoma Triumph”. There is a young woman in Canada in the initial phase of TIL. I don’t recall the institution.February 16, 2014 at 1:05 pm #63565 Your sister could come to the U.S. and it would be free at the National Institutes of Health. She would have to pass stringent acceptance criteria though. Please keep in mind that there is no comprehensive data on this very grueling therapy. It has not been tested in a randomized trial against newer agents. It often leaves patients without further options if it fails. I don’t believe it is offered in Canada since they don’t prescribe IL2 there and that’s a centerpiece to it. Also the cost would be very high. Here is it paid for by our taxes and is about $500K per patient! You can probably inquire at: 1800-4-Cancer.
Can you be more specific about what trials you’ve checked out? Is she BRAF pos or negative?July 22, 2015 at 1:23 pm #63566wowistaParticipant
I didn’t know TIL was so expensive.
To update you Julia was sent to Toronto in May, I believe St. Margaret’s Hospital who offer TIL and PDL. There were no extra costs but it was too late and Julia passed away on June 30th.
PDL wasn’t offered in February/March in Canada which would have been the latest date for Julia to maybe have a chance.
The US did not allow Julia to come for treatment because she had surgery on her leg (melanoma related) and they do not allow you to enter the US with open wounds or post surgery within a certain period of time.
What bothered me is that Julia was diagnosed with stage II in 2008 but no treatment except Interferon was offered to her in all this time.
Are all these treatments only for the super rich?
Thank you for the people who answered us. We were so desperate and so grateful for any information. Thank you again.July 23, 2015 at 11:46 am #63567
I’m sorry for your loss, you were working very hard for your sister and I’m sure she appreciated it. The TIL is a labor intensive procedure on both the patient and hospital staff. It has many toxicities involved and just isn’t proven yet. I wrote a blog about it and I wouldn’t feel let down by not having it. ( my blog is: ) http://melanomainternational.org/2015/05/til-therapy-for-melanoma-magic-bullet-or/#.VbDTv7NViko
Anyway, I hope that you are healing from your loss and I wish we could have helped more. Best wishes to you.August 4, 2015 at 4:39 pm #63568GillyParticipant
Private TILs treatment under Prof Hawking at the Christie in Manchester, UK, is around 70.000 pounds Stirling – so considerably cheaper than the US and interestingly around the same price as Ipilimumab – The Tils trials in Holland and in Denmark are only accessible for Dutch/Danish patients for the moment.August 4, 2015 at 9:57 pm #63569 Comparing prices of an unproven treatment doesn’t seem judicious to me. IPI may be costly but proven in extensive trials of 100s of people to have 20% response and is a simple outpatient infusion.. The PD1 is proven far better without the toxicities associated with TIL and IPI. New choices are coming for those who don’t respond to PD1. Extensive hospitalization and dangerous toxicity is not a good choice to spend your life savings on until it is further proven to be a viable treatment.August 5, 2015 at 11:17 am #63570GillyParticipant I do get what you are saying Catherine – but here we are talking beyond the available treatments – when all else has failed .. Ipi, anti PD1, targeted therapies …- yes we need more research but desperate people dont always have the luxury to wait – also Ipi , “from clinical trial evidence” is not reimbursed for Braf positive patients in France – it is available post-PD1 for Braf negative patients (because after PD1s they have little else) – we are trying to change this (because we believe that patients should be able to access all possible treatments even if the response rate is 15-20% like Ipi !)August 5, 2015 at 2:58 pm #63571 I realize the new treatments are already not enough. But does spending all of your funds on an unproven therapy the answer? I don’t think so. I much prefer looking for a trial with the new combinations than spending a lot of money and enduring debilitating treatment with an unknown future. I hope we will find more therapies and combinations that are effective soon to take away the desperation that drives folks to the TIL therapy.August 6, 2015 at 12:01 am #firstname.lastname@example.orgParticipant I think one of the reasons people even consider TIL is the chance at achieving a long lasting and durable (dare I say “remission) response when they have failed other treatments…I can now say personally (b/c I just spent a week with my husband seeing 3 different top melanoma Drs) now that he has progressed on both ipi/Avastin and Keytruda, that there are Drs who put TIL down as an option to pursue if they feel you are in the right physical/mental condition to withstand it…my husband has not even done the BRAf drugs yet and TIL came up with all three physicians as a viable option for a possible longer term treatment…I almost wish it wasn’t an option b/c it scares us both …they explained the extreme toxicities, the unknown data on actual success except to say that they have all had patients who have had success at NCI…because he hasn’t done BRAF and there is always that small chance of longer term success with BRAf/MEK, we are signed up to do the BRAf/MEK/Nivitoclax trial in Boston mostly b/c we still have too many unanswered questions on TIL and would even be close to getting those answers until we traveled to Bethesda – (we have had a phone consult with them and next step was to travel there)…We need those tumors to shrink and TIL is a long process…our thinking is that we can revisit the TIL issue if and when he progresses on BRAF and hope that there is more solid published data on TIL then or a new treatment..The same 3 Drs who put TIL on the table said doing the BRAF study is also a sound and viable option….which to me isn’t comparing apples to apples! Totally different treatments…!August 6, 2015 at 11:53 am #63573 That is definitely a judicious reply. With the many patients I work with I would say that the fraction who have done well with TIL were at NCI. I have also lost patients with the treatment as it left them too debilitated to do any further treatment and they died. Those who did well were young patients and in robust condition to begin with. TIL doesn’t even yet have phase I data on it.
So until the evidence is in I can’t say it is worth the cost in funds nor the patient enduring such toxicity and many days of hospitalization. I am always rooting for the best possible treatment for melanoma patients but also with the leaning that the treatment does more good than harm.
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