[nordicParticipant]

Have had 2 months of this treatment now of Belantamab Mafodotin along with velcade and dexamethasone over a weekly course of 6 months with no problems of note to mention, I get a bit fatigued at times but this can happen with any treatment. Have had 2 eye tests done so far and have no eye issues so far. My next dose of Belantamab is 3r Feb. Saw one of the doctors overseeing my treatment this week and was very surprised to find out that even after just 2 rounds my levels have dropped a fair amount. With 4 rounds to go results so far have been very encouraging for me. Hope those who are on this treatment have the same experience and results that I am currently have.

[pedro16Participant]

Hi Nordic.

Pleased to hear that things are going well.

You’re actually one cycle behind me, as my 4th commences on the 26th January. There is a difference though, as my regimen lasts for eight months and not six. Then if things go according to plan, I believe that the Belantamab Mafodotin becomes a monthly maintenance infusion.

Apart from having the early onset of Glaucoma (which isn’t related to the BVD regimen), I was told that my eyes are ok. I do have a problem with a low platelet count, so Charlotte (my Consultant) has dropped the Belantamab Mafodotin for my 4th cycle. So, out of the four cycles I will only have received two infusions, but I’m told that this isn’t unusual.

Anyway, I hope things continue to improve for you.

Kind Regards,
Pedro.

[nordicParticipant]

My treatment Belantamab Mafodotin had to be paused last month as after 2 treatments I developed some eye problems, bad case of dry eyes for about 5 days before it started to get better. Still have some eye issues still but very much better now. Had a very comprehensive eye examination at hospital eye clinic 2 weeks ago, had some scratches on the eye and what they term micro-cysts in the eye blood vessels. Was only using dry eye drops quite often so they proscribed me Xailin night gel and must admit it has made a big difference in my eyesight recovery. my eyes have recovered well these past 2 weeks and now have another eye test in 2 weeks. Hopefully they will be good enough to restart Belantamab Mafodotin, results so far have been amazing in reducing levels from 10.7 to 5.4. can put up with with some eye problems if results continue to be like this, might finally have a much longer remission this time.

• This reply was modified 2 months, 1 week ago by  nordic.

[mayflyParticipant]

Hi Nordic and everyone else involved in this topic.sorry this is such a long response I didn’t realise how much I had to say! I had my first dose of belantamab at the end of nov 25 after my first line of dara/ lenelidomide stopped working,my paraproteins climbed back to double digits as did my light chains and increased size of lesions in various parts including femur and spine. Great improvement as numbers began dropping. However only had my second dose of belantamab yesterday (although weekly velcade injections and 20 mg of dexamethasone )due to eye problems, grade 3 impact on corneas, dry eyes and the start of cataracts, I’m having 3 weekly examinations at specsavers and finally they confirmed sufficient improvement so treatment could restart. I also have been referred to ophthalmology for assessment but who knows when that may be.i did use a cold eye mask yesterday during the infusion as some people on the trials felt they helped but there is no clinical evidence to support this. Even with the eye issues I do feel very positive about belantamab and the consultant emphasises that 12 week gap is fine as it will still continue to work. The only pain is weekly velcade and 3 weekly bloods, eye tests and consultant appointments so life seems to revolve around the hospital once again. Good wishes to all of you and anyone considering this treatment.

[pedro16Participant]

Hi All.

So from what has been said, it looks as though I have been rather fortunate, as I’m due to start cycle five on Monday 23rd. This has followed a weeks break, due to a chest infection.
To date I’ve had an infusion on cycles 1 and 3 and I’m due to have another on Monday. The reason for the two breaks was due to my platelets dropping, but my last blood test showed that they were >50, so my Consultant was happy.

I’m having eye examinations at my local hospital and the Ophthalmologist is happy with the condition of my eyes, although for me, having seven lots of drops in my eyes every day, is taking its toll. Then I suppose that it is for the best.

Pedro.

[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.

[rabbitParticipant]

Hi icsdam,

That sounds like a difficult choice.

Just trying to explore all the options: what about elranatamab, teclistamab or talquetamab? Isatuximab/Lenalidomide/Bortezomib/Dexamethazone (it’s a first line treatment now, so second line should be possible)?

Regards
Rabbit

[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.

[pedro16Participant]

Hi icsdam.

Apologies for my delayed response, but I wanted to check some information, before replying to your post. As it’s an important decision that you have to make, this will be a lengthy post to give you as much info’ as I can, so please bear with me.

On Tuesday (28th) I will commence my eighth and final cycle of immunotherapy treatment. For me, this currently means that the twice weekly hospital trips for Bortezomib injections, will stop and if circumstances permit, I will be having periodic Blenrep infusions as my maintenance. I say if circumstances permit, as my eyes have now also been affected by the Blenrep, as others have said in previous posts.

For me, my eight three-weekly immunotherapy cycles were as follows:

Blenrep infusions were planned with a Bortezomib injection and Dexamethasone (taken at home) on cycles 1, 3, 5 and 7.

Cycles 2, 4, 6 and 8 I would only have the Bortezomib injection and Dex’.

During each three-weekly cycle the Bortezomib injection and the Dex’ were only administered for the first two weeks, then for the third week, there was no immunotherapy treatment at all.

I see that you’ve read and will no doubt have discussed the side effects with your Consultant, but as Rabbit has said, this isn’t an easy call especially in your circumstances, and unfortunately as you know, we all react differently. I actually thought I was one of the lucky ones, until I started to get dry, itchy eyes and blurred vision. This affected my reading and driving too.

When I saw a Registrar he said that my eyes had deteriorated and I was told that I had punctuate erosions with microcyst-like changes affecting 60% of my cornea (this was graded between 2 and 3, 3 being the worst) So my seventh cycle, which contained my Blenrep infusion was postponed. The condition of my eyes has improved, but not enough for me to receive the Blenrep during my eighth cycle. So it is now a matter of ‘wait and see.’

One important piece of information is my counts. Despite the frequency of my Blenrep infusions and the fact that I have not been able to finish my initial treatment as planned, my counts have continued to drop and my Paraprotein level is now 4.2.

It is my understanding that if my Paraprotein level stays the same, or if they continue to drop, and my eyes improve, then I will receive Blenrep as a periodic maintenance drug. If my counts start to increase, then I will have to move on to the next line of treatment.

As I’ve said, I apologise for the length of the post but I wanted to give you as much info’ as I could on what is a difficult decision.

Kind Regards,
Pedro.

[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

[pedro16Participant]

Hi icsdam.

I’m pleased to be of some assistance.

The blurred vision did not stop me from getting about or completing my normal daily routines in the house (or outside), it was just my driving and reading that it affected the most. To be fair, the reading was very ‘hit and miss’ as for the driving, my wife can drive, so she completed my hospital visits.

Kind Regards,
Pedro.

[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

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