[GerryParticipant]

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 willing to go to the media if something is likely to come from that, but it is all rather heavy at this stage of MM and so very disappointing that we should even be thinking along these lines.

Thanks again for the very informative contact.

Gerry

[GerryParticipant]

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 from Phase III trials, why can’t England and why do they need further data? Is it just the monotherapy they require evidence for? Finance and age/MM stage come to mind.

Anyway, thanks for the contact – good to hear other views – and sending all good wishes to you and your treatment.

Gerry

[GerryParticipant]

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 not being financially viable.

I shall push forward – both with the MP and with your idea of approaching the media – but energy is sadly lacking. I was told that only one-third of trial patients had a successful outcome with this drug and that is supposed to make it all OK? One does like to have a choice.

Gerry

[GerryParticipant]

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

[GerryParticipant]

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 have waited for the short time.
The petition is to appeal for those of us who have just missed out. It is run by 38 degrees and if you just access DaratumumB Petition on Google, you will be able to sign.
Hope this is clear and that you feel able to support. Thank you.
Gerry

[GerryParticipant]

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

[GerryParticipant]

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 me know how you get on.

Gerry

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