- This topic is empty.
October 15, 2013 at 8:58 pm #21626dora201077Participant
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 euro 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.October 16, 2013 at 12:30 pm #62739
I am checking with our sister group in Belgium, MICAB for advise. I will see what I can find in Romania, but you might consider traveling and inquiring in Germany, where there are many trials and therapies available. Also, France, Italy, England and Spain are possibilities. I am checking in Russia as well. Please look at our Global Resource page:October 17, 2013 at 8:36 pm #62740dora201077ParticipantCatherine Poole wrote:
I am checking with our sister group in Belgium, MICAB for advise. I will see what I can find in Romania, but you might consider traveling and inquiring in Germany, where there are many trials and therapies available. Also, France, Italy, England and Spain are possibilities. I am checking in Russia as well. Please look at our Global Resource page:
We are buying first month of treatment with Zelboraf…but that’s all we can do…it’s rather difficult for romanian citizens to get treatments like this in other european countries…i’ve asked around and paperwork takes months, plus expenses..time spent away from my husband and the result may come too late but any idea would be helpful , thank you in advance.October 17, 2013 at 11:23 pm #62741
For clinical trials, there is often no charge for the drug. There is expanded use program in Russia that would not cost you: There is ongoing Yervoy extended access program in Russia (in Moscow and in Saint Petersburg).
it is possible to call to Dr. Kharkevich Galina Yurievna +7495 324-12-65. She is responsible for this program. You might be considered for participation if meets the inclusion criteria. Or you could ask her about Romania contacts.
I have also seen folks giving away their leftover Zelboraf for free. We don’t condone this, but you could post on the bulletin boards with this request, including MPIP.orgOctober 18, 2013 at 12:08 pm #62742VioletaParticipant
Dear Dora, I am very sorry for this situation and I understand perfectly what you are going through. As Catherine has mentioned please also check in Germany at Dermatology Clinique from Essen. The contact data are available on their website. We are also from Romania and just went there (with my sister) for a preliminary evaluation in order to enter into a anti-PD clinical trial. They are permanently running experimental studies. You can ask for advice and an appropriate clinical trial for your husband. I wish you all the best.October 18, 2013 at 12:12 pm #62743
- The forum ‘Melanoma Diagnosis: Stage IV’ is closed to new topics and replies.