[pedro16Participant]

Hi Carole.

I’m pleased that I’ve been able to give you both some hope and I’m sure David will be too.

The life of a person caring for someone with an illness like Myeloma can very demanding and I’m sure that there are plenty who will sympathise with your sentiments. I know that my wife will, especially as I spent a year on crutches, waiting for my right femur to be nailed, because of progressive bone disease.

The twice weekly visits to the hospital can be demanding, but if the Blenrep is paused and you have discussions with your Consultant, things like holidays can still go ahead, if Geoff and you are able of course.

Anyway, don’t give up hope, especially as new treatments are always being discovered and approved. And finally, it’s worth seeing if there is a Myeloma UK Support Group in your area, as they are a source of useful information, as you chat with people in a similar situation.

Pete.

[pedro16Participant]

Hi Carole.

As David has said, it’s still early days.

I’ve now completed the initial eight, three weekly cycles on the BVD treatment and one maintenance cycle, of just Belantamab Mafodotin (or Blenrep).

My initial three weekly cycles, were one with BVD and then the next, with just the Velcade and Dex’. I managed three cycles with two BVD treatments, after which I developed micro cysts on my corneas (keratopathy). As with your husband, my Blenrep was paused and I continued for the remaining five cycles with just Velcade and Dex’.

The important thing for me was my Paraprotein counts continued to drop for the remaining five cycles and were 3.1 when it finished! like your husband, my vision was initially blurred and I had dry eyes, but my they gradually improved, so that I was able to start my maintenance schedule, last Tuesday.

Appreciating your concern; when my eyes deteriorated, I asked my Consultant if my BVD treatment would stop and she said “no, as long as my counts were dropping, it would continue. If my counts rose again, then it would.”

So, I hope this offers you some hope from someone like David, who has experienced similar challenges.

Pete

[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.

[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.

[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.

[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.

[pedro16Participant]

Hi Everyone.

A little update.

So, tomorrow I will be commencing week three, of my third cycle of my BVD treatment.

Things unfortunately haven’t been going according the plan, because as previously stated; on my second cycle I had no Belantamab Mafodotin infusion, due to my platelets dropping to 12.

At the end of cycle three, week two, my Consultant decided that I should not be given the Velcade, as my platelets were dropping once more.

On the 23rd I will be visiting my hospital for my Ophthalmology Assessment. Hopefully this will continue to show no signs of deterioration in my vision.

Will let you know how things go.

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

[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 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 5 months, 2 weeks ago by  pedro16.

[pedro16Participant]

Sorry louiseb!

I said that ‘like you my daughter had young children’ when in effect it was ‘myelomamum’ who said that she has.

That said I’m hoping my info’ will help.

Pedro.

[pedro16Participant]

Hi louiseb!

Receiving any cancer diagnosis is a life changing event and for us suffering from the various effects of Myeloma, often missed by Nurse Practitioners and Doctors alike. As a few have said, sometimes it takes hospitalisation, or numerous visits to the Doctors before it is spotted. Personally, I think that you are one of the more fortunate ones, as it appears to have been caught early. Mine was the latter and after several visits to my Doctor and a Chiropractor (!) I was told by a Nurse Practitioner that I had an appointment to see a Haematology Consultant as “it appears that you have Myeloma.” When I asked what that was, I was told “it’s a cancer and you can look it up on the internet!” I suppose shock stopped me complaining about being told in this manner, although my Consultant and MacMillan Nurse were not impressed!

I’m pretty fortunate (?), as I’m older and have dealt with a few upheavals. My Grandson was a one-year old, when diagnosed with Lymphoblastic Leukaemia and we fortunately rang the bell’ in May of 2022, after a four year battle to beat it! This was the same year that my daughter was diagnosed with breast cancer, two weeks before me being told that I had Multiple Myeloma. Like you, she had two children at primary school.

Anyway, when to tell your loved ones is always difficult and a personal choice. My wife (my rock!) and children were told that I had Multiple Myeloma and my grandchildren, that I was poorly and would have to go to the hospital. They have all coped reasonably well with this, given what they’ve gone through too. I did promise to be open and honest with my children and tell them exactly what was happening and treatment wise, when.

Referring to your possible treatment; I was given two cycles of VDT-PACE (intensive chemo’) before I had my SCT. These involved two hospital stays of around a week. For me personally, being hooked up to an IV for around 96 hours was a pain, as it limits what you can do. As for the Autologous SCT; if you do receive it, you will have your Stem Cells harvested (a few six hour sessions of being sat in a chair) and then a hospital stay in isolation for three weeks, or so. I received mine in Nottingham City Hospital (they were fantastic!) and allowed patients to have a limited number of visitors at set times and I was fortunate to be out in about three weeks.

So, after my lengthy diatribe! Yes, living with Myeloma can be difficult, but please never, ever, give up, be strong and remember that new lines of treatment are constantly being discovered. Also, this forum and those who like me, have had some treatment and lived with Myeloma in its various guises, will always help whenever they can.

Myeloma UK is a fantastic Charity and their sources of information outstanding, so please make use of that too.

Pedro

[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 5 months, 3 weeks ago by  pedro16.

[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

[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.

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