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April 17, 2014 at 5:50 pm #21925
Please help at Royal Marsden they oferred no more options. They said thet her tumors are very aggresive . She has tried only Zelboraf and Yervoy and they excluded the Braf/ Mek combo since its not approved in EU. She has 2 tumors in her brain and the oncologist said it’s very unlikely the surgeon will operate for the second time. I need guidance about what can be done to travel to US and where to go , appointments ect. Can you give me the prefix maybe I can call your help line as I tried with no sucess.
Please help I am desperate.April 17, 2014 at 6:53 pm #64130Catherine PooleKeymaster
Email me at: email@example.com we can discuss options. Can she travel ok? Have you tried Oxford? Mark Middleton is a great doctor there. But email me and we can discuss. You can also try our regular number: 610-942-3432April 18, 2014 at 8:35 am #64131VioletaParticipant Maggie, I am so sorry to hear this. I wish you a lot o strength to fight for her. I am praying for you, for us.April 18, 2014 at 11:03 am #64132 Thanks Violetta
Thanks your prayers and support are much appreciated.
Unfortunately in Eu medicine is harder to get and I am not sure if she is fit to fly to US.
We have to stay strong what ever happens.
You are in my prayers too
MaggieApril 18, 2014 at 3:40 pm #64133tcellParticipant
Sorry for the terrible things you are going through.
Just to let you know (I think Catherine mentioned this in another thread).
I have been diagnosed with stage 4 10 weeks ago and would not be here anymore with the tumor load I had without GSK BRAF/ MEK.
I live in Austria, so also EU. I am being treated at Vienna university hospital. I get Tafinlar as a standard prescription drug and MEKINIST through the GSK named patient program.
I cannot think of any reason why this should not be possible in the UK.
I do not know anything about the policy of the NHS but just to let you know that this seems to work fine over here. Are you sure that your treating doctors are well informed about the availability of these drugs? It cannot be a general EU problem as it seems to work here and tafinlar is even approved and covered by the insurance.
Otherwise maybe it would be enough to go to France if your insurance pays for it.
BRAF / MEKINIST improved my situation within days so I pray for you that you can find a way to get it!April 18, 2014 at 4:11 pm #64134
Thanks for your reply.
The oncologist in London said that since she already took Zelboraf it’s unlikely the combination will work and that her brain tumor is big. However we are willing to try anything at this stage.
Who is your oncologist in Vienna or France? and how long did it take you for the medicines to arrive?
We are from Malta being treated in London as in our country we do not have a melanoma specialist.
MaggieApril 18, 2014 at 8:13 pm #64135tcellParticipant
I am not an expert, just a patient so I am unable to tell wether it makes any sense at all to try dabrafenib after she has progressed on Zelboraf.
Maybe Catherine knows more about this.
My melanoma expert is Dr. Christoph Hoeller of the Medical University of Vienna Institute of Dermatology and he is very competent.
However, I do not think that it is easy to get an appointment soon there. Might take a few weeks. Then i do not know what he would say and even if you get the presrciption it could take a few days to get the meds.
I do not know what you have discussed with Catherine but maybe in your case it would be better to get a second opinion from somebody close by as soon as possible as a first step.
I cannot tell you how sorry I am am for this terrible situation, I guess most important of all do not loose faith and hope! You and your family are in my prayers!
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