[pedro16Participant]

Hi Everyone.

I hope that you are all as well as can be expected.

I’m just commencing cycle 2 of my new line of chemotherapy which is Belantamab Mafodotin ADC (approved by NICE in June of this year) and wondered whether anyone else has been proscribed this treatment?

The reason I ask, is that cycle 2 has been altered and I do not receive the ADC infusion, just Bortezomib injections and Dexamethasone tablets, along with other medication taken at home, as well.

As you would expect, the Haematology Consultants will be looking at what they believe is the best for the patient and I fully support this, especially as mine is excellent.

Thanks Pedro.

[rabbitParticipant]

Hi Pedro16,

I am not on Belantamab yet. However, when remission ends, it could be my next treatment, so I have been reading up on it.

You mention in another post that your platelets are at 11! Although protocols vary, there seems to be unanimity that a platelet count below 25 means that Belantamab treatment has to stop for a while.

Please take it easy and try to prevent any bleeding. If you are having turkey at Christmas, maybe hand the carving knife over to someone else!

All the best.

Rabbit

[pedro16Participant]

Hi Rabbit.

Removing the carving knife from me at Christmas, would entail someone having to wrestle it from me. That said I might invest in a butchers apron and cut proof gloves. 😂

The Belantamab Mafodotin means that I’m having three weekly checks on my eyes and have to have drops in them four times a day. I suppose it’s good news as it has been caught early, but the Ophthalmologist believes that I have the early stages of Glaucoma. Oh well, it’s just another ailment to add to the list.

With the low platelet count, below ten and they said that they would infuse me, but as my last blood test result showed an improvement (24) I was ok. The second cycle there’s no Belantamab Mafodotin, just Bortezomib and Dexamethasone. You could be right with what you said about the platelets and it’s something that I will ask my Consultant when I see her next.

I do know that NICE have been very specific about treatment breaks and when treatment will be allowed to continue, or stop.

I’ll try to keep you (and others) updated as I get further into this second regimen of eight three weekly cycles. Then it the ninth onwards just Belantamab Mafodotin as a maintenance. Well, that’s if it works for me, as I am rather problematic (had to withdraw from the RADAR Trial, Refractory to Lenalidomide, two stem cells transplants giving me eighteen months) it seems never ending, but I’m not about to give up!

Pedro.

[mayflyParticipant]

Hi Pedro,
I started Belantamab mefodin in mid November as my 2ndline of treatment. I’m the first patient in Gloucestershire.I’ve had eye tests every 3 weeks and had problems with my corneas so 2nd treatment was delayed and having seen consultant today it’s now delayed for at least another 3 weeks possibly more until my eyes improve. Still have weekly velcade and dexamethasone (which I hate) but my paraproteins had reduced a little bit today so I’ll take that as a positive.

[pedro16Participant]

Hi Mayfly.

Pleased to hear that you counts are moving in the right direction.

I’m not sure, but I may be one of the first in Lincolnshire to receive Belantamab Mafodotin ADC.

I would be interested to know which cycle you’re on. I’m on day four of the second and had my initial baseline eye-test prior to the regimen beginning and have had one more since. Both of these tests were carried out by Lincoln County Hospital, as opposed to Specsavers who I believe the NHS have contracted to do these.

The baseline test showed that I have suspected early stages on Glaucoma (wonderful!) Then on my three-weekly, follow-up test, I was given eye drops for the Glaucoma to complement the ones provided for the Belantamab Mafodotin ADC.

One thing I am going to mention to both my Consultant and the Ophthalmologist is I get a period of intense itching lasting about 30 minutes, when my drop are administered.

Have you experienced this?

Pedro

[nordicParticipant]

I just started on 1st Belantamab Mafodotin along with velcade and dexamethasone over a weekly course of 6 months(if no problems) after Radar trial drugs stopped working for me. Hopefully this new treatment will provide a longer remission time, been told this can be a least 3yrs So far have had no signs of any side effects of this new treatment. I hardly never had much much of any sides effects apart from some fatigue from all treatments chemo and then Stem Cell Transplant since April 23.

[pedro16Participant]

Hi Nordic.

Sorry for the delayed response!

I see that like me you had to drop out of the RADAR Trial too. I did, because I am refractory to Lenalidomide, so I’ve not been able to revive this as a maintenance drug, since I received my two SCT’s. You’ve mentioned side effects and a SCT. When did you have this, or have you had two?

I’m on day nine of my second cycle. This started with NO Belantamab Mafodotin infusion, just the Velcade (Bortezomib) and Dexamethasone (understandably, Christmas and the New Year, have also had an effect on what I’m being given) I will say that the Regimen I’ve been given, does vary from the one you’ve referenced Nordic, as mine is EIGHT (8) months of three-weekly cycles including the Velcade and Dexamethasone (if it works) before I go onto cycle nine onwards, which is just the Belantamab Mafodotin, as a three weekly maintenance infusion.

On another note; I have now copied a form that I was given initially for side effects, as I do have a tendency to unintentionally, miss some more minor side effects.

One I am suffering from is a lack of sleep as I’m getting anywhere from two to four hours (if I’m really lucky) a night. I’m now typing this at 02.15! I have mentioned that I’m also getting sore (itchy) eyes to the Nurses proving my chemotherapy, sometimes this is a lot worse than others. This is important, due to the potential side effects of Belantamab Mafodotin and I will talk to the Ophthalmologist, when I see him on the 2nd of January.

Anyway, please keep me and others posted on how things progress. And finally, the best of luck with your future treatments.

Pedro

• This reply was modified 2 weeks, 1 day ago by  pedro16.

[goffy1957Participant]

Hi guys
Just read your posts
I was on Daratumumab from April after being diagnosed with light chain myeloma No para protein
This worked great to start with
My numbers were 28000 then
After 5 months the Dara stopped working and numbers increased to 5000 from 1600
They started me on Belantumab and dex with Velcade for one cycle but now only velcade weekly because of eyes
I honestly can’t tell any difference but have to abide by what they prescribe
My numbers last week were 85 so fingers crossed
They have said BVD will start again once eyes go to grade 1 again
No side affects so far except the dex makes me like a Duracell bunny on treatment day
So I take a Nytol which eventually helps me sleep
Best wishes keep going
D

[rabbitParticipant]

Hi Goffy,

A reduction in your light chain (lambda or kappa?) from 1600 to 85 after just one cycle is really good! It looks as though BVD is working well for you.

All the best.

Regards
Rabbit

[pedro16Participant]

Hi Goffy,

As Rabbit’s said, that’s a positive response, which is great news!

Without wanting to sound defeatist, once my Belantamab Mafodotin ADC stops working (and as we all know, it will eventually), I’ve been told that treatment with Daratumumab will commence, as soon as permissible.

For you Goffy, I do hope that things continue on a positive note!

Kind Regards,
Pedro

• This reply was modified 1 week, 2 days ago by  pedro16.

[boisvertParticipant]

Hi everyone.
I am new to this forum and have been interested by your conversation.
Having been on a trial drug plus lenalidamide for 4 years, the myeloma has started to rise. Hence I have been given literature to read on Velcade and Belantamab with the view to starting 2nd line treatment. Having been on a trial for 4 years with a specific trial nurse helping every step of the way, I feel very much on my own and it’s scary. Need some friends who understand.

[pedro16Participant]

Afternoon boisvert.

I hope that you are as well as can be expected.

I’ve got a couple of questions to ask regarding where you are at currently.

1 – What was the trial drug that you were taking with Lenalidomide?
2 – Since leaving the trial and the support given by the Nurse, have you hooked up with any MacMillan Nurses?

The reason I ask about your trial, is four years is good going! I was on the Myeloma XV (RADAR) trial and had to withdraw, after two cycles, as I was refractory to Lenalidomide, which I’m sure you know is one of the main Myeloma maintenance drugs. I then went on to have two cycles of VDT-PACE, prior to two Autologous Stem Cell Transplant (Yes, I like doing things in twos).

When my Paraproteins began to increase again, my Consultant said that she would like me to start Belantamab Mafodotin regimen (One of the first patients to receive this in Lincolnshire County Hospital Trust).

The bottom line is, you must not feel alone! My Consultant, the MacMillan Nurses, Myeloma UK literature, and forums such as this, have all been invaluable and should all be able to support you as needed.

I have just started Cycle 3 (of three weekly trials) and will be keeping people informed on how things are progressing and any challenges I personally encounter along the way.

Several things that I have found is:
My cycles are three weeks long and require several day trips per week, to the hospital.
You will be required to have a baseline eye test and subsequent follow-up checks at the end of each cycle
The Dexamethasone may well play havoc with you sleep pattern (although you possibly know that from your trial.

Kind Regards,
Pedro

[pedro16Participant]

Hi boisvert.

I should have added a couple of bits of information to my post above.

Names: ‘Blenrep’ is a name that you might hear bandied about frequently and this refers to GSK’s name for Belantamab Mafodotin.

The other is ‘Vecade’ which is the trade name for Bortezomib. (You may well have come across this already, as it’s frequently given with other treatments, as an injection given subcutaneously, in the stomach.)

For me, this regimen (treatment) requires me to take other tablets during each ‘three-weekly’ cycle. As you would expect and will most likely have also had to take similar, these are to help combat the side effects of the treatment I’m on. I take mine morning and night-time, with the exception of my eye drops, which I use four times a day.

Keep your ‘eye out’ for people like ‘Rabbit’ posting in the forum, as I often find that these posts are a good source of info’ and a starting point for exchanges.

Finally: PLEASE REMEMBER, YOU ARE NOT ALONE!

Kind Regards,
Pedro

[rabbitParticipant]

Hi Boisvert and welcome to the forum.

Also, thank you Pedro16 for the intro 😀.

I don’t have experience of Belantamab yet. However, I have been in remission for longer than expected and am well aware that all good things must come to an end 😀. Belantamab, Bortezomib and Velcade may well be my next treatment when remission ends.

However, I do have experience of Bortezomib (= Velcade). It caused me some constipation and fatigue, but I recovered from both when treatment ended. If I say that it was manageable, that is a relative thing, but I was able to keep up working from home.

A word of warning about Bortezomib. It works using an oxidative pathway. In plainer English, food and drink full of antioxidants can stop Bortezomib from working.

Previously on this forum, I have advised against vitamin C supplements and green tea. Both in particular have lots of aantioxidants.

Having read further, my revised suggestion is both more specific and more general (yes I know that sounds contradictory 😀).

– It is best to have food and drink which contains a lot of antioxidants away from when you are having Bortezomib injections. Bortezomib anticancer action is over a couple of days at most, so when it has done its job for that cycle, antioxidants are OK.
– Food and drink containing lots of antioxidants also include fruit juice.

For more info (and where I got this from) please see this US-based myeloma forum:

https://www.smartpatients.com/conversations/contraindications-with-velcade

Regards
Rabbit

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