Home Forums Melanoma Diagnosis: Stage IV Financial support for Yervoy treatment of my sister

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  • #21512
    Violeta
    Participant

    Hello to everybody,

    My sister was diagnosed with metastatic melanoma in April 2012 . She had limphnode surgery in her left arm. Over summer melanoma came back aggressively and extremely painful. In the same time doctors found another metastasis in her hip. She experienced four months of the most awful pains I have ever sow and she was close to die. In September 2012 she has begun Zelboraf and this indeed worked miraculously and gave her another valuable 10 months. She went back to the work and had almost a normal life again. The treatment with zelboraf was possible only due the humanitarian campaign organized by her colleagues at University of Bucharest, because in Romania the insurance provider is not covering any new expensive treatments.

    Now zelboraf is not working anymore. The tumor from her arm is growing again fast and she feels already some pains. We are afraid for the worst. Her oncologist recommended Yervoy and radiotherapy.We are again in a very bad situation, not able to find financial resources for the treatment. Although the campaign continues, we do not have big hopes that this time it will bring enough funds to cover her treatment with Yervoy.

    I spent some time looking for charity organizations/foundations, which are financially assisting patients with cancer. What I have found on internet is granting patients in USA , but I did not find anything similar for Europe. For example I sow that Bristol Myers has a financial assistance program, but this is not running in Europe and for sure not in Romania. Does anybody know a Financial Assistance Program or a Charity Foundation granting patients in Europe too? We just hope to find some grants for her. The amounts of money necessary to cover these treatments is impossible to be achieved for almost any family.

    Please have a look on the fundraising campaign organized by University of Bucharest in Romania for my sister:

    ****//media.unibuc.ro/salvam-un-profesor-salvam-generatii/second-stage-of-treatment-the-campaign-we-save-a-professor-we-save-generations-at-10-months-of-treatment

    Please share the link with anybody you think is in the position to help us financially or gave us a good idea about how we can access grants for her treatment with Yervoy.

    Any help and advise is welcome.

    Many thanks,

    #62127
    Catherine Poole
    Keymaster

    Your sister is most fortunate to have you looking out for her. I will do some research for you and hope we can get some response for you. My other thought is whether she could travel and work out the details to enter the PD1 trials across Europe. Let me also put you in touch with the folks at MICAB for their assistance. I know Yervoy is very expensive and a clinical trial may help avoid that..PD1 has a higher reported response rate and is a different immunotherapy than Yervoy, and there are a few trials that don’t require prior Yervoy failure, here is one recruiting now in Paris: France

    MSD France Recruiting

    Paris, France

    Contact: Dominique Blazy 33 147548990

    Please give them a call and see what can be worked out. We can provide a transportation grant.

    #62128
    Violeta
    Participant

    Dear Catherine, thanks a lot for your message and the intention of MIF to provide her a travel grant, this impressed me a lot. I already emailed my sister in Romania about this clinical trial, but indeed we have to find out more. She will speak with her oncologist about PD1, but for sure she cannot travel soon even if they agree on going for it. My sister will begin tomorrow radiotherapy and this will take about one month and half; it was the therapy indicated to go in the same time with Yervoy, but she needs to begin faster, because the tumor from her arm is coming back in force. Excepting de arm, she has metastasis in two lymphatic ganglion and one metastasis in her hip. We have the impression that her general status is now a little degrading. Anyway, I advised her to call the number you indicated in France to find out more, let’s see what is coming out indeed. It is also ok to put me in contact with MICAB. Keep in touch.

    #62129
    Biljana
    Participant

    Dear Violeta,

    I am very sorry to hear about your sister, I hope Ipi or anti pd1 will help her in fighting melanoma. I live in Turkey and I am in similar situation with you. It is very frustrating when you know there are drugs that can help but you can’t reach them.

    Anyway, about your question. I met Ms Simona Ene from Romania in Vienna, at ESMO Patient Seminar. She is from Romania, active in fighting for cancer patients’ rights both in her country and on European level. She was vice president of European Cancer Patient Coalition and I am sure she will have an advice for you. You can find her contact information on ECPC site.

    I wish you all the best in your fight,

    Biljana

    #62130
    bettin
    Participant

    Hi Violeta,

    I am really sorry to hear about your sister- you can find my contact details here

    http://www.m-icab.org/contact.

    Bettina

    #62131
    Violeta
    Participant

    Biljana wrote:

    Dear Violeta,

    I am very sorry to hear about your sister, I hope Ipi or anti pd1 will help her in fighting melanoma. I live in Turkey and I am in similar situation with you. It is very frustrating when you know there are drugs that can help but you can’t reach them.

    Anyway, about your question. I met Ms Simona Ene from Romania in Vienna, at ESMO Patient Seminar. She is from Romania, active in fighting for cancer patients’ rights both in her country and on European level. She was vice president of European Cancer Patient Coalition and I am sure she will have an advice for you. You can find her contact information on ECPC site.

    I wish you all the best in your fight,

    Biljana

    Many thanks, Biljana. I feel so sorry for your situation too, I know that my sister was lucky with the humanitarian campaign of university, but this is a rare situation..I am sincerely sorry for the difficulties you go through. I want so much to change these sad situations for everybody.

    I wrote to the leader of humanitarian campaign of my sister at Bucharest university and she find a very good idea to write to mrs. Simona Ene and even to send a institutional letter and to ask for support. Thanks a lot again.

    #62132
    Violeta
    Participant

    Hi Bettin, thanks a lot for your contact, I just send a message to you on micab website.

    #62133
    Violeta
    Participant

    Hello again, I spent the last nights writing emails, browsing and reading about melanoma. I can do probably only this, since my sister is in Romania and me here, in Netherlands. I notice how much all of you know about melanoma and realised how little I know, I feel like staying in contact with you for this and for many other reasons. I saw an interview with Patricia Garcia Prieto which impressed me a lot and then I discovered that she is not anymore.. Reality hits me hard. I only live with the nightmare of loosing my sister and this is already for me too hard. Wondering every second how is for her, how is for all of you to live with this illness.

    Back to the financial aspects , good news is that the treatment for my sister is costing less , ”lucky” her lost some weight, so from new calculation Yervoy is 52000 euro and a promise 1% discount from the producer, not making a big difference, but still. Before yesterday we received a phone call from yervoy producer offering a first yervoy infusion free of charge, we were in paradise for couple hours,but they changed the mind yesterday. Was so unfair to promise so easy and then to take back the words..However her doctor said she cannot go now for a clinical trial because of the disease fast progression (especially the tumor from her arm). So my sister started yesterday Yervoy combining our family savings and the sum presently raised by the humanitarian campaign. We still hope to persuade the company for a donation. Looking continuously for ways.. I hope all the best for all of you.

    #62134
    Violeta
    Participant

    For us is continuing the stress of raising funds for my sister treatment. We have almost 9000 euro through the humanitarian campaign and we are now confident she will go for the second infusion from this money. BMS promised to sponsor somehow her treatment but no decision until now. This week they have to give us an answer and I really hope I can come back to you with good news. If BMS grants her like they initially promised this will take a big financial load from our shoulders.

    For the next step in her treatment (in case of not responding to yervoy or post-yervoy) now things are more clear and we are considering she goes for a clinical trial. Is giving us a big release to know what to do next. Thanks a lot Catherine and Bettina for your support and advices in this matter. Best wishes for everybody!

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