› Forums › General Melanoma Community › antiPD1, TIL or something else ?
- This topic has 9 replies, 3 voices, and was last updated 8 years, 1 month ago by debbieevans.
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- August 10, 2015 at 6:39 pm
Hi,
I know that my question is probably impossible to answer, I know what's melanoma like, that every single patient reacts differently, so I am rather looking for advice and tips that could be useful for our decision.
Long story short, my father was diagnosed in November last year, when he had two operations. After that, he had no therapy and by the end of January, mets spread to the whole body(it happened really quickly, in two weeks maybe). All that happend, because doctors promised him to enter clinical trial, but delayed the process, apparently on purpose, until mets appeared, so he became uneligible for the trial – which eventualy made us buy Zelboraf on our own, as we live in freaking Serbia, where advanced melanoma is not treated at all, except using chemo, which is ridiculous in my humble opinion.
Now, after 5 months of Zelboraf therapy (which was btw really efficient, he responded better than average), tumor markers are rising again from day to day, and I think we will need a new option very soon. We heard about TIL in Manchester, it's cheaper than in usa and Israel, so we might get money for that, and are considering that option. Second option is to start buying Keytruda, we would be able to collect funds for 6-7-8 months maybe. Tricky part is that, whatever we choose, it would leave us with no money, in deep debts, and without chance for further actions, so this seems like a really hard decision. There is third option, as we could get antiPD1 for frer here if my father goes through Ipilimumab treatment first, but it is really hard to find trials for ipi, and it is way to expensive for us to buy it.In the end, just to add that we also considered going to Israel, Tel Aviv, to Ella Clinics on Sheba Medical Center (dr. Schachter), because we heard that they are really good in Melanoma treatment, but are unsure of therapy prices there. I know that TIL there is around $200,000 and that is out our league, and cost of one doctors examination is around $5000, which is also a lot. However, I have heard that they are willing to find clinical trials for their patients, and that you can go there every 3-4 weeks and pay just for examinations/consultations, but I don't know if it is true.
If anyone has any advice on what to do or not to to, what to take into consideration, it would mean a lot to us.
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- August 21, 2015 at 6:50 pm
I can see the frustration with what you and your family have been dealing with the past few months. Thank you for reaching out to CURE OM and our ocular melanoma program. The Melanoma Research Foundation has a great wealth of knowledge and resources, that may be able to help you with these difficult decisions. Here is the link to our main Patient Information Page, which also has another forum for melanoma patients that might be of great use. https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page. I want to also post a link to our resource page which I hope will assist with looking into different treatments, treatment centers, and other options. https://www.melanoma.org/understand-melanoma/melanoma-treatmentIn addition, Melanoma Research Foundation has a buddy program that allows individuals to be connected to others who have been through similar treatments, etc, to be a support system. http://www.melanoma.org/find-support/phone-buddyPhone Buddy | Melanoma Research FoundationThe MRF’s Phone Buddy Program offers a supportive lifeline for people newly diagnosed with melanoma.If you need any further assistance, please know that we are here and ready to support you.-
- January 20, 2016 at 5:37 am
Can you give me more resource about this, I am still confused about it.
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- January 20, 2016 at 5:37 am
Can you give me more resource about this, I am still confused about it.
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- January 20, 2016 at 5:37 am
Can you give me more resource about this, I am still confused about it.
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- March 2, 2016 at 6:28 am
Your resource is much enough for me. Thanks a lot!
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- March 2, 2016 at 6:28 am
Your resource is much enough for me. Thanks a lot!
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- March 2, 2016 at 6:28 am
Your resource is much enough for me. Thanks a lot!
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- August 21, 2015 at 6:50 pm
I can see the frustration with what you and your family have been dealing with the past few months. Thank you for reaching out to CURE OM and our ocular melanoma program. The Melanoma Research Foundation has a great wealth of knowledge and resources, that may be able to help you with these difficult decisions. Here is the link to our main Patient Information Page, which also has another forum for melanoma patients that might be of great use. https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page. I want to also post a link to our resource page which I hope will assist with looking into different treatments, treatment centers, and other options. https://www.melanoma.org/understand-melanoma/melanoma-treatmentIn addition, Melanoma Research Foundation has a buddy program that allows individuals to be connected to others who have been through similar treatments, etc, to be a support system. http://www.melanoma.org/find-support/phone-buddyPhone Buddy | Melanoma Research FoundationThe MRF’s Phone Buddy Program offers a supportive lifeline for people newly diagnosed with melanoma.If you need any further assistance, please know that we are here and ready to support you. -
- August 21, 2015 at 6:50 pm
I can see the frustration with what you and your family have been dealing with the past few months. Thank you for reaching out to CURE OM and our ocular melanoma program. The Melanoma Research Foundation has a great wealth of knowledge and resources, that may be able to help you with these difficult decisions. Here is the link to our main Patient Information Page, which also has another forum for melanoma patients that might be of great use. https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page. I want to also post a link to our resource page which I hope will assist with looking into different treatments, treatment centers, and other options. https://www.melanoma.org/understand-melanoma/melanoma-treatmentIn addition, Melanoma Research Foundation has a buddy program that allows individuals to be connected to others who have been through similar treatments, etc, to be a support system. http://www.melanoma.org/find-support/phone-buddyPhone Buddy | Melanoma Research FoundationThe MRF’s Phone Buddy Program offers a supportive lifeline for people newly diagnosed with melanoma.If you need any further assistance, please know that we are here and ready to support you.
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