[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 3 days, 23 hours 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.

[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 2 weeks, 3 days 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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