Home Forums Melanoma Diagnosis: Stage IV ugent help please!!!!

  • This topic is empty.
Viewing 15 posts - 1 through 15 (of 18 total)
  • Author
    Posts
  • #21524
    catleya
    Participant

    Hello everyone,

    It is the first time i write but i always read the forum.

    My husband is very ill.He is Braf positive and we are waiting for the compassionate use of Dabrafenib ,but is taking very long.

    His illness is progressing very fast and he only has quimio available at the moment.

    I am desperately looking for somebody who has some Zelboraf left over or to find out where we could buy a month supply at least until we receive the drugs to give him the best chance.

    We are in spain but i can fly anywhere.

    I would really appreciate any help.

    Regards,

    Mitsy Soto

    #62159
    Catherine Poole
    Keymaster

    It would not be a good idea to take Zelboraf before getting the dabrafenib. They are two different drugs. Where is he getting treatment? Did you check our global list for places in Spain? France or Italy may be an improvement, but let me see what else I can find out. You can check our global list at: http://melanomainternational.org/web-resources/global-resources

    #62160
    catleya
    Participant

    Catherine Poole wrote:

    It would not be a good idea to take Zelboraf before getting the dabrafenib. They are two different drugs. Where is he getting treatment? Did you check our global list for places in Spain? France or Italy may be an improvement, but let me see what else I can find out. You can check our global list at: http://melanomainternational.org/web-resources/global-resources


    Dear Catherine,

    Thank you for your answer.

    I am asking for Zelboraf because Dabrafenib is very difficult to access at least here in Spain.His oncologist told me that at the moment any could do because we are really desperate.The compassive use could take another 15 days to arrive.

    He is being treated at the MD anderson Spain.Sorry ,but i just one him to have at least a fighting chance.

    The progression has been like an explosion.

    I really appreciate your help.

    #62161
    Catherine Poole
    Keymaster

    Ok, sure if the doc can prescribe the Zelboraf that would be fine. But if he doesn’t respond to it, he would not be able to do the dabrafenib I’ve heard. Sounds like your doctor is working on it.

    #62162
    catleya
    Participant

    Dear Catherine,

    My oncologist is not working on it.She is going on holiday today.She says she does not have any way to get the pills until we do not receive the compassive use.

    At the moment we have only the quimio.We are in hospital .My husband is too ill to go home.

    She told us that if we could buy the Zelboraf in the States or somewhere else we could interrup the quimio and start the Zelboraf or the Dabrafenib .But apparently the Dabrafenib is more difficult to get because is a new drug.

    We just may not have a lot of time and probably if the Zelboraf works for him we could try something else down the line.

    We are being treated in a private hospital ,so getting the medicines through the public health would take a lot of time .

    (Hospital 10 de octubre is public health)

    Thank you for any suggestions.

    #62163
    Violeta
    Participant

    Dear Catleya,

    I am living in Netherlands and I have family in Romania. But if we order here or in romania and everywhere else it will take time. And you dont have time it is clear.

    Do you have a zelboraf prescription from your doctor? Go to a public hospital in Spain and ask there in their own pharmacy (usually hospitals have their own pharmacy) if somebody returned a box of zelboraf ..You can be lucky enough that somebody returned a box to the hospital.Just send a person to the public cancer hospital to ask this.

    This all I can think about right now. God help you to find it!

    We had 2 Zelboraf boxes left, but we have returned them 10 days ago. I am so sorry.

    Violeta

    #62164
    PatW
    Participant

    Catleya, have you been able to locate Zelboraf or dabrafenib? If not, you might try posting a message on the Melanoma Patients Information Page forum. Somebody there might have a suggestion.

    Catherine, why do you say that if you have taken Zelboraf you can not take dabrafenib? Both drugs are FDA approved in the States. Is there a medical reason for not trying both of them?

    #62165
    Catherine Poole
    Keymaster

    Pat: the contraindication is that if you don’t respond to Zelboraf, then you will not be prescribed Dabrafenib. Yes, both approved yet restricted to certain indications. I think that this person already posted on MPIP. I have reached out to our sister group in Belgium for further advice. It is very complicated in Europe and compassionate use very difficult to obtain.

    #62166
    catleya
    Participant

    Dear Friends,

    Thank you very much for all your suggestions and help.

    We have been offered a month supply of Zelboraf by Denisek ,who is another melanoma patient who lives in the States.She has been extremely generous .

    A dear friend is flying over to collect it as soon as she put it in the post to another friend house in Florida.We do not want more delays.

    I will keep you all informed of our story and just hope that my husband can survive enough to have a fighting chance with this drug.If we can make through the next couple of weeks and things get a little stable we will look for plan b.

    Thank you all and good luck.

    Warm hugs ,

    Mitsy and Michael

    #62167
    Catherine Poole
    Keymaster

    I hope your oncologist will be following this treatment closely. It is a very strong drug with many side effects. I can’t comment on the legality of this transaction however since the script was given to someone else, etc.

    #62168
    catleya
    Participant

    Thanks Catherine !!

    Yes his doctor told me he could benefit from this drug if we could find it.She left a colleague on charge of everything.

    We are in hospital,and we can not live because Michael is very poorly.They do not think we can make it.This treatment is the only option we have so we are not loosing anything.

    Warm hugs,

    Mitsy

    #62169
    Catherine Poole
    Keymaster

    Let us know how things go. The dabra may also come through, so fingers crossed your husband gets one or the other soon.

    #62170
    bettin
    Participant

    Catleya,

    URGENT- can you please contact me as soon as possible? I might be able to help you.

    Bettina, m-icab

    #62171
    palmtree
    Participant

    Hi. If you still need a supply of Zelboraf I can help – see my post earlier. I am in UK and have 4 weeks supply. C x

    #62172
    Catherine Poole
    Keymaster

    How is your husband doing? Did he receive the therapies? I hope he is doing better.

Viewing 15 posts - 1 through 15 (of 18 total)
  • The forum ‘Melanoma Diagnosis: Stage IV’ is closed to new topics and replies.