[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.

[pedro16Participant]

All I can say to you Rebecca is wow! And Stanley, you sound as though you will get there before very long. I know from having several relatives and friends who’ve had knee replacements, they are tough to recover from, but with your mindset I’m sure you will do it.

I’m just commencing a new line of Chemo’ and my platelet count dropped to 11, so banging my head, as I go in the loft to get the Christmas decorations down (A Lemax Village, well nearly a City 😂) was a bit worrying for my wife.

Still now the Village is erected in our lounge, with our JustGiving page, we’ve managed to raise over £300 for Myeloma UK.

Onward and upward guys (for me, without banging my baldy head!)

Pedro

[pedro16Participant]

Hi Rabbit.

I hope you are as well as can be expected.

As I look at some of the posts on the various topic forums, your name seems to crop up on a regular basis and I just wanted to show a bit of appreciation and say ‘thanks’

I’m sure like me, you would ensure that whatever you say, has been researched and this is something that not everyone may be capable of doing.

Keep it up!

Pedro16

• This reply was modified 7 months ago by  pedro16.

[pedro16Participant]

Hi QPR_FC.

Can I ask; why the South West?

I’ve had two cycles of VDT-Pace at Lincoln Hospital and followed this with 2 stem cell transplants in Nottingham City hospital.

After 18 months in remission, I am now on a newly approved treatment, called Belantamab Mafadotin at Lincoln Hospital. This treatment is administered as an Out Patient, with several hospital visits per week.

Personally, I have received excellent treatment by both hospitals, although like most they are extremely busy, but I honestly don’t feel that you will change this where ever you are.

I think that there will be parts of Lincolnshire and Nottinghamshire that would meet your requirements, although Nottingham iteself is not a place I would chose to live.

Pedro.

[pedro16Participant]

Good morning Morwenna.

As I’ve just come out of remission, the numerous medications that I currently take as part of my Chemotherapy, often reference the dreaded diarrhoea, however unlike several posts, I’ve not changed my diet too significantly. I certainly do think it is something I really should consider, but with Children and Grandchildren staying pretty frequently for meals, I’ve found it to be a bit of a challenge for my wife.

As I have said, I’m fortunate that mine is not constant and so my current remedy is taking Imodium Instants when required (I have checked with my Consultant about this course of action) and ALAWYS carrying some with me, when I go out.

I can only say that I hope your situation improves.

[pedro16Participant]

Good evening Rabbit.

My story is a bit longer than my post implies.

In May of 2022 we ‘rang the bell’ for my Grandson (an identical twin) after he fought and won a Lymphoblastic Leukaemia diagnosis at one years old. In October of that year, and two weeks before I was diagnosed with Multiple Myeloma, my youngest Daughter who was 35 years old, was diagnosed with Breast Cancer. So 2022 was a bit of a tough one!

Watching your children and Grandchildren suffer is far, far worse that what we suffer ourselves and a worry too. As an identical twin, my other Grandson has an 85% chance of a Leukaemia diagnosis. We cling to the 15%!

As I look forward; I’m filled with hope, as there are many great and caring institutions, who are working wonders to help people like us and Myeloma UK is one of the most important. For me personally, the NHS have been outstanding and my Consultants and Nurses the very best. I hope that you have had similar support.

I wish you well and hope that your remission is a long one and I will keep you and the others who view my posts updated on how my Belantamab journey unfolds.

Take care!

[Author]

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