Home Forums Melanoma Diagnosis: Stage IV Alternatives in Spain

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  • #21945
    DianaJavi
    Participant

    Hello

    My husband has been diagnosed with stage IV melanoma in October 2009 from a cutaneous melanoma excised 10 years ago .

    Then had metastasis in the mediastinum , lungs and axillary nodes. Were few ( 3 in the lung and 3 mediastinum ) and small.

    We live in Spain , and is treated in the Hospital Clinic of Barcelona.

    Since then received the following treatments:

    1 – Dacarbazine + MEK inhibitor vs Placebo: good response with reduction of the diameter of all tumors .

    Treatment with Dacarbazine 1 year and then continued for another year, with trial medication until occurrence of cerebral metastases.

    Leaving the trial , we are told that all that year he had been with placebo.

    2 – Ipilimumab : serious toxicity after dose 1 , presenting severe colitis which forced him to be admitted to the hospital for 1 month and receive two Remicade dose and high-dose corticosteroids .

    3 – Vemurafenib : 1 year and a half of treatment decreased the size of the brain metastasis and the other , so far that has appeared in resistance and growth of axillary lymph suprapectoral .

    The oncologist tells me that at this time, no other available clinical trial and that the only option is chemotherapy.

    No open trials of anti PD1 available in Spain and expanded access to reach Europe in 6 months .

    It is also possible that with a history of toxicity ipi , it leaves out the criteria for inclusion of immunotherapies .

    My husband is 47 years old and in excellent physical condición, and we have 2 children who need a father.

    We are lost .

    Anyone know of any other alternative in Spain.

    Thank you very much .

    Diana.

    #64228
    BNP68
    Participant

    Diana,

    I’m so sorry you are having to go through this. I wish I had specific information to treatments available in Spain but unfortunately I do not. Do you know what dose of Ipi your husband received? While you continue to look for a treatment or hope for PD-1 treatment to become available have you thought about trying a much reduced infusion of Ipi. My understanding is the High does Ipi is considered to be 10mg/Kg and the low dose is considered 3mg/Kg. Maybe you could see if they would try 1 or 2 mg/kg. It seems like your husband is very sensitive to the drug so maybe he doesn’t need as much as most people to get benefit. This is not the best option but one you may want to consider if other treatments do not become available. I’m hoping Catherine has some better options available to you. Best of luck to you.

    Brian

    #64229
    Catherine Poole
    Keymaster

    Toxicity to IPI doesn’t mean the same for PD1. Unfortunately, it will be a while until the EAP reaches Europe. You could come to the states and enroll him here. The EAP is opening in a lot of places, and already the Mayo clinics and a few in California are distributing it. I will pass on your case to our sister organization in Europe and see what they suggest for you as well. Check here in the meantime to see if there is a trial that might be suitable: http://clinicaltrials.gov/ct2/results?term=melanoma+spain&pg=2

    #64230
    DianaJavi
    Participant

    Thanks Brian and Catherine, with respect to ipi, is correct what you say because my husband has received 10 mg / kg.

    The problem is that in Spain is not approved and can only be managed within a trial, and I imagine that this toxicity, would be out of the inclusion criteria.

    I keep looking.

    Thanks for everything.

    #64231
    mazz75
    Participant

    Hello Diane

    We are in the same sad situation

    My sister was being treated at royal Marsden London, she took Zelboraf that worked for some months. Afterwards she developed brain tumors, which were surgically removed last November

    She was given whole brain radiation and IPI , she managed to take all the 4 doses, but unfortunately 3 new brain mets appeared in in the last scans.

    Docs said they can offer nothing more , we are desperate since she is only 28 years old.

    Maggie

    #64232
    DianaJavi
    Participant

    Maggi,

    the oncologist is looking for an alternative.

    When I have the information’ll let you know, maybe I can help.

    #64233
    mazz75
    Participant

    Hello Diana

    Good luck for an alternative and yes please keep me posted .

    Regards

    Margaret

    #64234
    Anonymous
    Guest

    Maggie:

    Sorry to hear about your sister. It is a tough situation to be in.

    There is some thought that High Dose IL-2 given 1-2 months after IPI may enhance the effectiveness of the IL-2 treatment (which as a treatment by itself has a complete response rate of 5-6% and ~15% partial response). Responses tend to be “durable”, meaning they last a while if you do get a response.

    It’s a physically tough treatment but if that is the only other possibility, then, if it is offered in your country, she may want to consider it.

    Jeff

    #64235
    Catherine Poole
    Keymaster

    I’m not convinced that IL2 is a good choice as the evidence isn’t compelling. In fact, I worry it does the opposite at this stage of treatment modalities. I know there’s an effort to find a use for IL2 and it is amazing in a small population (6%) but no response for the majority (94%) Most countries with socialized medicine do not use it because of the huge cost and hospitalization associated with it.

    #64236
    Anonymous
    Guest

    Yes, I was hesitant to mention it but if there is nothing left and it’s available…..

    #64237
    DianaJavi
    Participant

    I think before giving all for lost worth a try. Here the ipi is not approved and can only be used within a trial, and IL2 is not available.

    #64238
    BNP68
    Participant

    Catherine,

    Have you seen this study being done by Dr. Curti in Oregon? It’s another twist on IL-2 treatment and the results have been pretty impressive in the stage I trial recently completed. 66% complete or partial response for 12 patients. You still have the rough toxicities but the success rate makes it a little more tolerable.

    Unfortunately this info probably won’t be able to help Diana but I think it’s another viable option that may be available in the future.

    http://www.ncbi.nlm.nih.gov/pubmed/22674552

    Brian

    #64239
    BNP68
    Participant

    Actually looking at the data again more closely there were 7 melanoma patients. 1 had a CR and 4 had a PR. That comes out to 71% with a CR or PR.

    #64240
    Catherine Poole
    Keymaster

    I have to see large numbers to be a believer.

    #64241
    BNP68
    Participant

    Yep, definitely with only 7 there could be a statistical anomaly.

    Here’s phase II looking for 44 patients. Time will tell.

    http://www.clinicaltrials.gov/ct2/show/NCT01416831?term=%22IL2%22+and+%22sbrt%22+and+%22curti%22&rank=1

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