Searching for solutions - PLX4032?

Less than one minute read time.

After a tough weekend with my daughter (advanced melanoma affecting her liver and bowel) being soooo sick we are off to meet the hospice doctor to get help with pain and sickness. I am worried it is the start of a slippery slope into not being treated and being told to tolerate it. She has another chemo booked but the sickness seems to be because of her liver being affected.

We had such high hopes of the PLX4032 announcements in the summer but although her genetic material has been away for testing for two months we still don't know if she is B-RAF  positive (and therefore eligible for the drug) - but only in the USA and only if she is well enough to travel and only if they will help with cost. It doesn't sound likely really. I want them to try it anyway - results show within two weeks - it's quicker than waiting for someone somewhere to do these tests.

Anonymous
  • FormerMember
    FormerMember

    Wow that does sound like a tough weekend you certainly have a lot on your plate. Good luck with your efforts to get on the trial - I have just been through a long wait re genetics etc only to be told I am not elligible and was very disappointed (UK trial). It might be worth ringing up genetics to see when you can expect a result as the saying goes 'The squeaky door gets the oil' - make a noise and see if you can hurry things up a bit.

    Hope the hospice are helpful and can help sort some of your daughter's symptoms - they are usually very good.

    My heart goes out to you as a mother of 2 teenage girls - what you are gong through must be incredibly hard. Sending you some strength and love (and lots of luck) Jools xx

  • FormerMember
    FormerMember

    just dropped in to say hi !

    im a mum too ....... my boy is 31 .....  its the most worrying scariest of times ....

    just want to give you and your daughter big((((HUGS))))

    xNx

  • FormerMember
    FormerMember

    I was so sorry to read about your daughter and hope some treatment can be found soon that will help. I hope her pain is being controlled.

    Janet