Myeloma Forum | GerryWilliams | Activity

GerryWilliams replied to the topic Daratumumab in the forum Newcomers

Sun, 25 Mar 2018 14:04:41 +0100

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]

GerryWilliams replied to the topic Daratumumab in the forum Newcomers

Sun, 25 Mar 2018 13:57:25 +0100

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]

GerryWilliams replied to the topic Daratumumab in the forum Newcomers

Sat, 24 Mar 2018 12:07:12 +0000

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]

GerryWilliams replied to the topic Daratumumab in the forum Newcomers

Fri, 23 Mar 2018 21:00:01 +0000

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

GerryWilliams replied to the topic Daratumumab in the forum Newcomers

Sat, 10 Mar 2018 07:12:47 +0000

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]

GerryWilliams replied to the topic Daratumumab in the forum Newcomers

Thu, 08 Mar 2018 06:07:42 +0000

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

GerryWilliams replied to the topic Daratumumab in the forum Newcomers

Tue, 06 Mar 2018 14:00:28 +0000

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]

GerryWilliams started the topic Daratumumab in the forum Newcomers

Tue, 06 Mar 2018 11:18:01 +0000

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]

GerryWilliams started the topic What now? in the forum Newcomers

Wed, 31 May 2017 05:41:59 +0100

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]