[greenlarryParticipant]

Hi I’m Larry, up in the north east of England. Things began to be strange after I’d cleared a bout of shingles in October 2025. After that I got really achy lower limbs and had to use a walking stick. It was suggested I get blood tests done so I arranged that through my village doctor’s surgery. Then I had a few consults with a doctor at the hospital where I am now, and it was explained that I would need Dexamethasone to control the spread of things called Paraproteins. This was all new to me and after some research it was discovered I was way past the MGUS stage and therefore would be looking into a long programme of meds, including later, chemo.
Well its early days yet. But a week ago I felt really ill after tea and I violently threw up about 8 times, and so an ambulance was called. That led me here, where hopefully in a few days I’ll be going home.
Fingers crossed !

[rabbitParticipant]

Hi Larry and welcome to the forum.

You have been through a lot: first shingles, then a myeloma diagnosis.

It sounds as though you were only given Dexamethazone at first, even though you had paraproteins (which are a major indication of MGUS, smouldering myeloma and active myeloma), which is puzzling. Do you know what myeloma treatment is being planned? The NHS standard is a combo of 4 chemo drugs: Daratumumab, Velcade (also known as Velcade), Thalidomide and Dexamethazone. However, some patients are given alternatives to that.

There are also likely to be other drugs, possibly including Acyclovir, to prevent a shingles repeat.

The vomiting is concerning. Any idea what is causing that?

If you have any questions, please ask away. Many of us have had myeloma for years.

Regards
Rabbit

[greenlarryParticipant]

Thanks Rabbit, everything good now, no more vomiting. Ive no idea what smoldering myeloma is. Not sure of the treatment I’ll be on, early days yet.

[rabbitParticipant]

Hi Larry,

If you are saying that you have smouldering myeloma, then I can help on that one.

If that is the case, that would mean that you do not have active myeloma.

https://bloodcancer.org.uk/understanding-blood-cancer/myeloma/smouldering-myeloma/

Normally, smouldering myeloma is only monitored. However, in a few cases, patients are just starting to be given preventative chemo. It’s early days on that, though.

Regards
Rabbit

[greenlarryParticipant]

My doctor will have that information for me next time I see him

[greenlarryParticipant]

My paraproteins level were at 58 when the doctor tested me

[greenlarryParticipant]

Had a consult with my doctor today, I have a consultantation booked next Wednesday and to discuss treatment in depth. Then I will begin treatment on the 17th when I will begin with injections of daratumumab, bortezomib, and thalidomide (daily), along with dexamethasone.
Fun times ahead!

[greenlarryParticipant]

Got a riser recliner with heat and massage, makes life so much more bearable! Would recommend one to anyone!

[greenlarryParticipant]

Started treatment today. This is my treatment planner

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