Trial drug

JSB4 23 days ago

3 replies
20 subscribers
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So over the last few months my light chains have been creeping up & this week I was told by my Dr I have relapsed. I have been in remission 20 months I was very stunned & upset although I knew I would relapse. My Dr said there was a trial drug that would be good for me & gave me all the info on it my decision is to go on the trial study it opened 2 weeks ago. I will start screening next week to make sure I am suitable. The trial drug is Elranatamab it is a immunotherapy drug but they have 3 others that are combination drugs as you may not get the trial so will have one of the others which are as good if not better than nhs drug on offer for me my Dr’s words !! Lots to take in I hbe to tell my children but I will wait till after Mother’s Day. I will update on how it goes wish me luck.

jacquie

Cakie 22 days ago

Hi Jacquie. It's Sue here. Frist of all I'm so sorry to hear you have relapsed with you MM , what a shock for you .I hope you can get started on what ever treatment you choose very quickly and that you will see the benefits of it very soon as well . I've heard of the trail drug you talk about but have only read about it on Myelona UK site and the face to face monthly group I attend . Have you got someone to talk things over with until you can speak with your family. I really hope so x this is a brilliant site to go to and speak about how you are feeling and to get things out in the open .

I have MM diagnosed Aug 22. Have had all first line of treatment finishing with a SCT 2 years ago next week .

Get tested every 3 months and have a knot in my stomach every time waiting for results. I've used the Macmillan chat line several times when I need to speak to someone . It has helped me . Please do keep in touch and wish you all the very best xx

Cakie

JSB4 22 days ago in reply to Cakie

Hi Sue Thank you for your message. I do go to the Maggie’s Centre which does help, it is telling my children I struggle with but I will get Mother’s Day over & speak with them. I think as I was doing well I felt good (other than niggles I get ) it was a shock. My Dr & Team are very positive that the trial drug will suit me, I did struggle with the maintenance drug Lenedonide so hopefully not with this one. I do have a great sisters who I can chat with I am thamkful for that. I wish you well & all the best on your journey sue hopefully chat more I will keep an update of the trial drug.

Best wishes

jacquie

Cakie 22 days ago in reply to JSB4

Hi Jacquie, telling our children is the hardest thing, my 3 are adults now and my daughter lives in Australia with her family. When I got my diagnosis we told them all on the same day , video to Aus . There was alot of tears love and support . I know it's hard to seem to be upbeat and positive when inside you are anything but ..

I too struggled with Lenalithamide and had to give it up so have no maintenance drug at tge moment . Take the positive vibes from your Docs and team and go with it .Thank you also for your good wishes xx

Cakie

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