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Viewing 15 posts - 1 through 15 (of 30 total)
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  • in reply to: PD1 approval and the restrictions #64746
    mazz75
    Participant

    Hello Catherine

    Since anti pd1 will be first approved in the States. Will European citizens with no other option able to buy the medicine?

    Regards

    in reply to: Alternatives in Spain #64233
    mazz75
    Participant

    Hello Diana

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

    Regards

    Margaret

    in reply to: Alternatives in Spain #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

    in reply to: Zelboraf And Braf Mek #64183
    mazz75
    Participant

    Thanks Karen and Marta for the feedback

    My sister progressed on Zelboraf , she developed brain mets after 9 months then was given IPI with no success, since we are in Europe she cannot go access Anti pd1

    The combo is not approved either but we managed to find a trial in Brussels .

    Fingers crossed.

    Wishing you health and hapiness

    Maggie

    in reply to: Feeling Helpless #64134
    mazz75
    Participant

    Hello

    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.

    Regards

    Maggie

    in reply to: Feeling Helpless #64132
    mazz75
    Participant

    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

    Maggie

    in reply to: Please help #64121
    mazz75
    Participant

    Dear Violeta

    I am very sorry for you and for your sister , Unfortunately I cannot help you with the pills.

    Please stay strong and don’t give up

    I will remember you in my prayers in this difficult moment.

    Maggie

    in reply to: anti pd1 compassionate use in Europe #64024
    mazz75
    Participant

    Thanks for your reply Bettin

    Below is the answer I got from Catherine regarding the combination.

    “For access to the combination there’s a named patient programme that the patient’s treating clinician can apply to the GSK UK medical director to see whether the patient would be eligible under the criteria of the programme”

    Since my sister already took yervoy and Zelboraf now we are hoping that in some way or an other she can try the combination. It will not be easy I guess. I don’t know why the EMA is taking so long when so manay patients in the US benefitted from the combination.

    Are you being treated in Europe also?

    Truly depressing

    in reply to: anti pd1 compassionate use in Europe #64022
    mazz75
    Participant

    Hi Catherine

    She already had brain surgery total brain radition, yervoy. Nothing seemed to have worked. Does this mean that to access the compassionate use one has to be stable? Things seem to be moving fast, too fast.

    Please help

    in reply to: anti pd1 compassionate use in Europe #64019
    mazz75
    Participant

    Thanks Catherine

    Your dedication towards helping us caregivers and patients is admirable.

    I looked the clinical trials in Uk and nothing seems fit for her.

    Some times I think that we should get the money and travel to America fast to get her in anti pd1 compassionate use, but I don’t know what needs to be done.

    Regards

    in reply to: anti pd1 compassionate use in Europe #64017
    mazz75
    Participant

    Hi Catherine.

    Any clinical trials in uk we can try to get her in?

    in reply to: anti pd1 compassionate use in Europe #64015
    mazz75
    Participant

    Hi again Catherine

    Looked again at the bump on her lower back it’s the same size as before. I think it’s more wishful thinking -(

    she has already taken Zelboraf but it was stopped since she developed brain tumors,

    Since the combination is not approved in UK do you think the oncologist will be willing to prescribe it?

    Thanks Maggie 😥

    in reply to: anti pd1 compassionate use in Europe #64014
    mazz75
    Participant

    Thanks Catherine,

    So even if not approved in combination it is still possible to access the drugs? Correct?

    I noticed the lump on her lower back last Monday still I was not sure what it was since it was hard to touch. Then on Monday she was admitted in hospital and she was given steroids immeditely for her swollen brain. dr confirmed through the scans that the lump on her back is melanoma. Today after just 2 days on steroids the lump was noticably smaller.

    Could it be the tumor was inflamed by yervoy and it was actually working and the steroids are taking away the inflammation that kills the tumors.

    THANKS MAGGIE

    in reply to: anti pd1 compassionate use in Europe #64012
    mazz75
    Participant

    Thanks Lesli and Catherine

    They gave her steroids for the swelling and she is doing fine. Almost back to her normal self.

    Scan results are out 2 lesions in brain that seem to have grown and one in her lower back that was not there before. She had total brain radiation back in December and a course of 4 sessions of yevoy that she has just finished 4 weeks ago. Don’t think yervoy is working. Still we have to wait and see what professor Gore from Royal Marsden has to say. Hopefully the appointment will be next week.

    Regarding NHS not covering the cost of Braf/ Mek it’s a problem however we have a local fund that maybe we can use if these pills are prescribed. One way or an other we will get the money.

    Can stereotactic radiation be done on the two lesions even if she already did whole brain radiation?

    Wishing you health and happiness

    Maggie

    in reply to: anti pd1 compassionate use in Europe #64009
    mazz75
    Participant

    Hello Catherine

    Thanks for your reply! I’m extremely worried since yesterday we took my sister in hospital she was very confused in her speech , Speaking without making sense. At CT of the brain was taken and she has swelling of the brain and 2 mets. Now we are waiting for the results of the brain MRI and full body CT.

    I would like to know if the Braf Mek combo are approved in UK since I read that they might work on brain mets.

    Thanks Maggie

Viewing 15 posts - 1 through 15 (of 30 total)