GerryWilliams

  • Gerry replied to the topic Daratumumab in the forum Newcomers 6 years ago

    Hello Gala

    Interesting to read your email and thanks for the helping me to interpret what is going on. The more chemotherapy one has, obviously there is less chance of anything working positively, which is depressing.

    I was certainly looking forward to the chance of Daratumumab monotherapy, but no luck. My wife has written to our MP and is…[Read more]

  • Gerry replied to the topic Daratumumab in the forum Newcomers 6 years ago

    Hello Ian

    Good luck with the Daratumumab start on Monday – all good wishes for a positive response.

    I am 77 years of age and was looking forward to Daratumumab monotherapy to hopefully give my body some respite from the four regimes of chemotherapy I have had. Not to be……and I agree with you that as most other places approve Daratumumab…[Read more]

  • Gerry replied to the topic Daratumumab in the forum Newcomers 6 years ago

    Thanks Ian for voicing what we in this position must all be thinking.

    I shall write to my MP and see what the situation is there, but have thought that the pharmaceutical company responsible for this drug had not provided the evidence for those who have had four sessions of chemo already. It does feel that I and others have been written off as…[Read more]

  • Gerry replied to the topic Daratumumab in the forum Newcomers 6 years ago

    Thanks to all who have signed and shared the Daratumumab petition – still hoping the weight of opinion may be an influence. Really appreciate any support – thank you.
    Gerry

  • Gerry replied to the topic Daratumumab in the forum Newcomers 6 years ago

    Hi Gala
    The petition is about the fact that although Daratumumab is now licensed For use in the UK it has stated that it is for those who have had three chemo regimes only. I have had four, the last being because although Daratumam seemed to be my best option, NICE could give no indication when it might be available. As it happened, we could…[Read more]

  • Gerry replied to the topic Daratumumab in the forum Newcomers 6 years ago

    Paula – just as a matter of interest I have joined a petition so let’s hope the weight of opinion might be an influence. Feel I have to try something. Good luck with your next appointment.
    Gerry

  • Gerry replied to the topic Daratumumab in the forum Newcomers 6 years ago

    Thank you for your reply Paula – yes, it does seem really tough. I was hoping that the numbers affected would put some pressure on the ruling. Let’s hope so as it was really hard to accept ,hopes dashed not knowing the restriction in the first place. Anyway, I hope your news is constructive and wish you lots of luck with further treatment. Let…[Read more]

  • Gerry started the topic Daratumumab in the forum Newcomers 6 years ago

    Hello! I’m hoping someone may relate to my history.

    I was diagnosed with Multiple Myeloma, light chains, in 2012 and have since had four treatments of chemotherapy. Our consultant wanted Daratumumab for me but NICE could not commit as to how long before licensing in England. Therefore the fourth chemo was started to cope with the increasing…[Read more]

  • Gerry started the topic What now? in the forum Newcomers 6 years, 10 months ago

    Hello – just wondering if anyone else is in a similar position.
    I was diagnosed with lamda lightchain myeloma in 2012, and immediately entered into a Trial – Cyclophosphomide, Dexamethasone and Lenalidamide. I had 12 months remission.
    Thalidamide was then tried, to no effect, so I was put on Valcade and Dexamethosone which resulted in a few…[Read more]