A Diary Of A Mesowarrior Living With #Mesothelioma –Here Is My Small Part I played In the Israel TV Film About Keytruda -Life Is Too Precious


Life is too precious

Special Project Fact: One drug breakthrough gives new

hope to thousands of cancer patients, but also threatens to destroy them financially. Ronnie Coben and Noa Saturn accompanied the three heroes in life chance

http://www.mako.co.il/tv-ilana_dayan/2016/Article-22dabfd696e5551006.htm&Partner=facebook_share

At last I have the link to the program that I appeared in with my dear friend Nika. Im on at 20-15 but the whole program is interesting even if we cant understand the language

She had contacted me December 2015 with a message

Dear Mavis, My name is Nika, I am 35 and I have 4th stage Mesothelioma almost 6 years. I am struggling. However I can’t get carbo-pemetrexed because it is my third chemotherapy during these years, I have too high toxicity already and my body can’t resist to this treatment anymore. I am looking the trials with opdivo or keytruda. I have EU citizenship and I came to UK to find the way to survive. Please help me to contact necessary people. Without national insurance no one can’t help me. Do you know any contacts who I can speak with, who can help me? Thank you so much for your help and assistance.

She told me she had lived in Lithuania, than in Israel.  and like myself , when on Chemo she had  exceeded toxicity in her body and there was no more chemo for her, With pemetrexed it is slowly growing So I told her that the best thing would be to get in contact with MSD Israel as I had read they are investing Imunotherapy in Israel .

At the end of January I Nika was so happy –Dear Mavis, I have got great news! The trial with keytruda is worldwide. I could participate in Israel too. I am really happy about that. Mavis, do you know something about keytruda action vs fertility? Do I need to preserve my ovaries with decapeptyl 3.75 as I did it when I had chemotherapy? Have you heard about keytruda action and reaction to the young women?

This wasn’t a problem I needed to worry about so I advised her to contact MSD again and ask about fertility.

In February Nikas told me  I am waiting for the answer from merck, thus week my pathology will be sent to US. During one month they should give me an answer if I am starting trial.

She then told me she had been interviewed the main Israel’s channel. They are making report about Keytruda. The target is to explain to the ministry of health how important would be to enter this encouraging drug to health basket. That people would have possibility to get it for free or for less money. In the interview I told how I found you and you helped me to make a right choice. Maybe you would agree to act in a scene how we are talking via Skype about keytruda? They would like that people would hear that from you, that it helped you, that you are alive and helping people all over the world. Reporters are very nice people. They are trying to make movie about keytruda as soon. Would you agree to participate in this interview, Dear Mavis? Reporters will talk with you later and explain if you will accept this. That’s because of you. You gave me a hope and underlining what I need to do.Any answer is ok.

So of coarse I answered I would be delighted and we waited months for it to hapen.

Nika then contact again  to say she had done her part The main thing they want to explain and to show how critical to some people to get this treatment if they do not have money to pay for it even.

We did our Skype together and Nika questioned me and I answered. It was chaotic really with the camera man walking in front of the camera but of coarse I knew they would edit. Now it has been shown on TV in Israel I realise they have edited so much and I have only a short peace but I really do not mind. Just playing a small part in such a wonderful film of three courageous young people –If only I could understand what was being said. ha ha !!

I get the jist of it and the word Keytruda is being said over and over again. There is even a small clip showing Keytruda being Manufacturing and the bottling of the drug from the vats -just as MSD had told me, this is done in Ireland.

Nika has had her 5th injection no so I pray she is doing well. It has shown how We are struggling to have more of the drug in trials and how so many Meswarriorsa around the world are struggling to pay privately for the drug as they are in UK, US and Australia.

Nika has just written an update for me -her side of the story

Actually, I was looking information about Mesothelioma and keytruda trials all over the world. I was in UK and I was looking trials in UK. I found information about Mavis Nye with Mesothelioma and I contacted with you. It was on 30 of December. On the 1st of January you wrote me that you almost clean now. I started crying of happiness because I never knew that there is an exit with our diagnose. Than you wrote me addresses in Lithuania but I didn’t tell you that I moved to Israel. I have possibility to move to Europe if it is needed. Than we tried to find MSD in Israel but there were no trials with keytruda. I proceed searching. As your story was very same to mine. I was sure that it will works for me too. I tried to speak with the money fund that helps to find investments.it was really hard I thought I am going crazy. My doctor told me that he can’t write me prescription that I need this treatment because he scared of something in this biurocracy system. Just can’t…after 3 month running writing a lot lot of email everywhere…nothing moved. Trial in UK should open. I started to think how to get there….and suddenly after the Medical cancer conference I am getting an answer that trial with keytruda will open soon in Israel! It looks long 3! months of waiting…because I didn’t know if they will accept me in
 My doctor didn’t help me at all. I was looking for researchers contacts to ask them if they will agree to give me a chance to try to win this ‘lotery’
 My dear, Mavis, you gave me a huge hope and power to act and not to give up

 

 

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