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September 2, 2014 at 7:47 am #22160
My oncologist has inquired about the Merck EAP for me. This was about three weeks ago and no answer yet. How long time does it usually take to get any answers.
Tired of waiting.September 2, 2014 at 11:12 am #65352Catherine PooleKeymaster
Good question, hard to tell. I know that they are working with this outside agency for the EAP. It will be approved soon in the U.S. and that makes the company very busy of course. But the delay probably lies with the outside group, are you outside the U.S.?September 2, 2014 at 11:23 am #65353 Yes Catherine, I live in Sweden. Mercks EAP has come to Sweden. I am so tired of waiting, all my life is about waiting this yeat. Tanks for your answer!
/NinniSeptember 2, 2014 at 3:42 pm #65354hejingParticipant
Ninni, have you asked your doctor about status of your application. We also waited quite a while to learn later that they were missing information in the application form.
The company distributing Pembro in Europe is called IDIS Pharma, European HQ in the UK. We live in Germany and our application was also send to the UK HQ. In case your doctor is not willing to ask on your behalf, why not contacting them directly
Good luck!September 2, 2014 at 8:07 pm #65355
Thank you Hejing for your answer!
I have emailed my oncolgist and asked if she has got any kind of answer but she hasn’t replied. If any information is missing I suppose they have informed her. Now I mailed to idispharma and hope they wil answer.
/ninniSeptember 2, 2014 at 9:23 pm #65356AnonymousGuestQuote:
If any information is missing I suppose they have informed her
I would not make that assumption. I hope your oncologist answers quickly and is willing to help follow up with the company. Many have found that your best and strongest advocate is yourself.
JeffSeptember 3, 2014 at 10:01 am #65357lak1Participant
My oncologist applied for me 28 th August he originally appleid to the IDIS compay but they are no longer handling applications ( he applied I think about 18th) I got approval this Mon 1st Sept.
Hopefully i will have it this week.September 3, 2014 at 12:00 pm #65358Catherine PooleKeymaster
I can’t tell you how frustrating this process has been, but I’m sure you know. They would not release any information to me about locations, only doctors could ask..yet in the U.S. I was able to get all of the locations. Happy it is finally moving along for some of you!September 4, 2014 at 12:32 pm #65359 Thanks for your answers, it means a lot to me I feel quite lonely in this matter. My oncologist mailed me that the answer from Mercks was that they don’t allow pembrolinumab to patients who have had severe side-effects with other immunotherapies. She is going to send them some more information from the trial I was in so it wil take time until I know for sure. I have read at this forum about people who had severe sideeffects and still got pembro. I had my sideeffects from ipi (liverfunctions). I got nivo in the trial but progression forced me to quit. Then after one fusion of IPI I got severe sideeffects and had to quit that too. Now I have to put my faith in dacarbazine. Are there other options, I am braf wildtype.
/NinniSeptember 11, 2014 at 7:58 am #65360SilkroadParticipant
We are waiting for an answer from Merck too. Just want to let you know that you are not alone.
Best of luck to all of us.
RongSeptember 11, 2014 at 9:51 am #65361lak1Participant
Ninni – how severe was your hepatitis- ALT more than 5 times normal? Was there any other reason why liver enzymes might be up- I have known people get roung this by noting that there was ablation of liver at same time or radiation of spine causing some liver damage etc. Or any other reason for liver damage which is now rectified?
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