[pedro16Participant]

Well, after being diagnosed with Multiple Myeloma on my birthday in 2022, I enlisted in the Myeloma XV Trial. Unfortunately I was refractory to Lenalidomide, so I had to withdraw.
Since then I’ve had two stem cell transplants and undergone surgery to my right femur and hip and had several close calls with a Sepsis diagnosis.
Unfortunately my Stem Cell Transplants only gave me 18 months in remission before my Myeloma reared its head once more.
Tomorrow, (25th November) I’m told that I will be the first Lincoln County Hospital patient to receive Belantamab Mafadotin (Blenrep), Bortezomib and Dexamethasone.
All I can say is “bring it on and let’s see how my Multiple Myeloma likes that.” LOL!

[rabbitParticipant]

Hi Pedro, welcome to the forum.

You have had a tough time over the last 3+ years. Going through one stem cell transplant is a lot, let alone two of them.

All the best with belantamab. I have read up on it (it may well be my next treatment when remission ends). It looks pretty effective, and you are sounding very positive!

[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!

[tony642Moderator]

Hi Pedro.

Nice to hear from you, and I would be very happy to be your friend on here. I am also one of the Myeloma peer buddies who speak on the phone or on Zoom with those living with Myeloma, especially newly diagnosed ones. If this is something you would lie to consider, you can refer yourself for the service via the website.

I was diagnosed in 2019 when I collapsed after having what felt like being smashed in the back by a sledgehammer.I didn’t know at the time, but that was 2 vertebrae suffering a wedge fracture and collapsing. That was due to the Myeloma causing Kidney failure and I also a tumour on my spine, as well as other complications. Due to the kidney failure (GRF 4%), I spent 12 days in ICU on emergency dialysis, and a further 5 weeks in hospital!

A few months later, I had a stem cell transplant and went into partial remission for 3 and a half years, but then it came back, so I was put on high-dose chemo to try to control it. That worked, and for the last 18 months, I have been on a maintenance dose of Lenalidomide, which is controlling it well.

I am leading quite an active life, and make the most of it that I can. I regularly swim, ride my mountain bike and motorbike, and have been able to return to active duty in the local Coastguard Rescue team. For me, it is a case of recognising and accepting what I can no longer do (Like running, which I used to enjoy), but finding things that I can do and making the most of them!

Myleoma is incurable, but doesn’t mean that life stops, and you will find a way of getting the most out of life that you can.

Please keep in touch.

Kind regards, Tony

[Author]

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