[icsdamParticipant]

Hi Rabbit,

Thank you for your very quick, detailed and honest reply.

You are right that I have had dexamethasone before and have also had bortezomib. I have modest cataracts at the moment from previous treatment so will just need to see how quickly they progress but it is good to know that cataract surgery has been a big success for you.

It is good to know that fatigue could be a problem as if it happens then I won’t worry about it and can look into ways to deal with it beforehand in preparation for it.

I hope that you remain in remission for a very long time and have a good quality of life so you can enjoy it.

Thank you again for being so responsive to my questions.

All the best,
Icsdam

[icsdamParticipant]

Hi Rabbit,

Thank you.

I would really appreciate any insight and tips you may have with respect to the Dara-RVd treatment. I know everyone reacts differently but would still be interested to hear how it was for you if you were happy to share.

Many thanks,
Icsdam

[icsdamParticipant]

Hi Rabbit,

Sorry for the long delay in responding to you and thank you for the link you shared. I am also a bit of a geek and had already watched it 😄

I did a bit more research on whether it was possible to get a treatment which hadn’t been approved for use and found out through the MacMillan website that there was a procedure whereby your consultant can make a case to your health board if they feel that the treatment would be of benefit in your particular case.

I had read up on the POLLUX trial which compares DRd with Rd in relapsed patients with 1 or more previous lines of therapy. The quoted PFS times were better than Belantamab Mafodotin and obviously there aren’t the eye problems.

I asked my consultant at my recent appointment if he would make a case for me to receive this and he said yes 😁
He also said that because I had had a good length of time in remission and my bloods, apart from my paraprotein, were unremarkable that he could also add in bortezomib (Velcade). So I will be starting Dara-RVd on 20th May.

Best wishes,
Icsdam

[icsdamParticipant]

Hi Pedro,

Thank you for that extra information. It is helpful to know that it was really just reading and driving that were the problems.

All the best,
Icsdam

[icsdamParticipant]

Hi Pedro,

Thank you so much for your very detailed and informative reply. I really appreciate the time you have obviously taken over it.

I am so pleased to hear that you have been lucky enough to not have had eye problems until your last cycle and that the treatment has worked well for you. I hope that it continues to work well for a very long time and you don’t have any more eye, or other, problems with it.

If you don’t mind, could I ask how much the blurred vision interfered with your daily life apart from reading and driving eg were you able to cook or make a cup of coffee, wash dishes, get around your house safely? Also, how long was it that you were unable to read and drive for? I know that this is highly individual but it is always helpful to hear someone’s lived experience.

Thank you again for taking the time to reply to my post and please know that it has made a difference for me and is truly appreciated.

Wishing you well,
Icsdam

[icsdamParticipant]

Hi Rabbit,

Thank you for your reply and so quickly too.

I haven’t been offered any of those options. Could it be because I am in Scotland and they are not approved for 2nd line treatment?

I had asked about Daratumumab with lenalidomide and dex as data from the Pollux trial gives very good results but apparently it is only approved for newly diagnosed patients in Scotland.

[icsdamParticipant]

Hi All,

I have relapsed after ASCT and have to decide between 2 options for 2nd line treatment. These are belantamab mafodotin with bortezomib and dex or carfilzomib with lenalidomide and dex.
The belantamab mafodotin obviously gives better PFS but I am really concerned about the eye side effects as I live on my own and do not have family nearby to help if I was to get blurry vision and/or significantly reduced vision such that I could not see to read or drive.
I know that this drug is a relatively new option but wondered if anyone had experienced significant eye effects and how this impacted daily living.
Very grateful for any replies that might help me make this difficult choice and wishing you all the very best in your myeloma journeys.

[Author]

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