› Forums › General Melanoma Community › Melanoma Stage 4 , Romania
- This topic has 6 replies, 2 voices, and was last updated 11 years, 7 months ago by
fortiz.
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- October 15, 2013 at 3:53 pm
My husband has been diagnosed in may 2012 with st 3 b melanoma; first tumour in the right sole. First he had that removed, plus a santinel node behind the knee and numerous inguinal limph nodes, 3 surgeries in one. The sole tumor was malignant and an inguinal node. He had chemo for 6 months, and then, in february 2013 after a regular CT they found nodes in his abdomen. they surgically removed them and they were negative for cancer; Next regular CT showed a mass in his tigh, it was removed and found to be a transit determination of the melanoma. They decided that my husband should take interpheron, high dosage the first month and then normal dosage for year. But on 23rd sept he had a PET CT and there are lung nodules 4-7 mm and 3 different mediastinal nodules, that cannot be surgically removed.
The braf mutation was found on his primal turmor, so it tested POSITIVE.
The right treatment would be VEMURAFENIB and IPILIMUMAD, newest drugs in melanoma. We tried to find a posibility to get the treatment in Romania, because as you know the drugs are very expansive, but we couldnt find one. The one clinic we found, that had clinical trials with these drugs says they do NOT have trials anymore for these drugs, since they were used to be able to seel the drugs in Romania, too.
Recenty I found out on melanoma.org that there are 2 even newest drugs : dabrafenib and Trametinib..I wonder if they will do clinical trials in romania with those…
We cannot afford any of the new drugs..since they cost 23000 euros ipilimumab and 7000 euro vemurafenib…
If there's anything you could advise us to do, please do so…since my husband and me reached a point when we don't see any way of managing this terrible disease.
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- October 15, 2013 at 4:45 pm
I am sorry that you and your husband are in this difficult positon. I'm afraid that I do not know much about the European health care system or whether they are still doing clinical trials on the drugs you mentioned. However, there is another online melanoma forum called the "Melanoma International Foundation" where a lot of the patients are from Europe. I suggest that you post your questions there. The URL is: http://forum.melanomainternational.org/mif/ Good luck to you.
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- October 15, 2013 at 4:45 pm
I am sorry that you and your husband are in this difficult positon. I'm afraid that I do not know much about the European health care system or whether they are still doing clinical trials on the drugs you mentioned. However, there is another online melanoma forum called the "Melanoma International Foundation" where a lot of the patients are from Europe. I suggest that you post your questions there. The URL is: http://forum.melanomainternational.org/mif/ Good luck to you.
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- October 15, 2013 at 4:45 pm
I am sorry that you and your husband are in this difficult positon. I'm afraid that I do not know much about the European health care system or whether they are still doing clinical trials on the drugs you mentioned. However, there is another online melanoma forum called the "Melanoma International Foundation" where a lot of the patients are from Europe. I suggest that you post your questions there. The URL is: http://forum.melanomainternational.org/mif/ Good luck to you.
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- October 16, 2013 at 9:31 am
I have found two clinical trials in Romania at http://www.clinicaltrials.gov/ just searching for "melanoma romania":
*Phase 3 Study of Nivolumab or Nivolumab Plus Ipilimumab Versus Ipilimumab Alone in Previously Untreated Advanced Melanoma (CheckMate-067): http://www.clinicaltrials.gov/ct2/show/study/NCT01844505
*A Pharmacokinetics Study to Investigate the Effect of Ketoconazole on Vemurafenib in Patients With BRAFV600 Mutation-Positive Metastatic Melanoma: http://www.clinicaltrials.gov/ct2/show/NCT01765556
I think the first one is a great trial and is in Bucharest, Cluj-napoca, Lasi and Timisoara. The second one just in Timisoara. Both of them are not yet recruiting, but you can start the contact. You can also search in bordering countries.
I am from Spain and I always use http://www.clinicaltrials.gov/ to find new treatments for my wife.
God bless you.
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- October 16, 2013 at 9:31 am
I have found two clinical trials in Romania at http://www.clinicaltrials.gov/ just searching for "melanoma romania":
*Phase 3 Study of Nivolumab or Nivolumab Plus Ipilimumab Versus Ipilimumab Alone in Previously Untreated Advanced Melanoma (CheckMate-067): http://www.clinicaltrials.gov/ct2/show/study/NCT01844505
*A Pharmacokinetics Study to Investigate the Effect of Ketoconazole on Vemurafenib in Patients With BRAFV600 Mutation-Positive Metastatic Melanoma: http://www.clinicaltrials.gov/ct2/show/NCT01765556
I think the first one is a great trial and is in Bucharest, Cluj-napoca, Lasi and Timisoara. The second one just in Timisoara. Both of them are not yet recruiting, but you can start the contact. You can also search in bordering countries.
I am from Spain and I always use http://www.clinicaltrials.gov/ to find new treatments for my wife.
God bless you.
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- October 16, 2013 at 9:31 am
I have found two clinical trials in Romania at http://www.clinicaltrials.gov/ just searching for "melanoma romania":
*Phase 3 Study of Nivolumab or Nivolumab Plus Ipilimumab Versus Ipilimumab Alone in Previously Untreated Advanced Melanoma (CheckMate-067): http://www.clinicaltrials.gov/ct2/show/study/NCT01844505
*A Pharmacokinetics Study to Investigate the Effect of Ketoconazole on Vemurafenib in Patients With BRAFV600 Mutation-Positive Metastatic Melanoma: http://www.clinicaltrials.gov/ct2/show/NCT01765556
I think the first one is a great trial and is in Bucharest, Cluj-napoca, Lasi and Timisoara. The second one just in Timisoara. Both of them are not yet recruiting, but you can start the contact. You can also search in bordering countries.
I am from Spain and I always use http://www.clinicaltrials.gov/ to find new treatments for my wife.
God bless you.
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