Starting Maia protocol

Hi Carlos, welcome to the forum.

As you are asymptomatic, does that mean that you currently in smouldering myeloma?

Anyway, I have had my first line of treatment and at the moment I am in remission, solely on Daratumumab.

Side effects with these drugs vary from person to person, but these are my experiences...

Firstly, the Dara injection itself. It's a thick liquid, and a pretty large injection into the stomach. Because it's thick, it can take a few minutes. Being a wuz , I have a numbing cream as the injection can hurt a bit as it goes in (not trying to scare you, it's not so bad).

I feel fine for the first couple of hours, but I don't hang around as a few hours later fatigue hits me. 

I used to get diarrhoea the day after, but now I would describe the situation as semi-diarrhoea for the following two days. (I stay anonymous on this public forum so that no colleagues, relatives etc know about the personal stuff). Also a bit of fatigue during this time, but manageable.

That's what I have.

Thank you chicken2   I have been SM since 2021 but since end of November past they “upgraded” me to active myeloma. Your experience and comments are highly appreciated. It is like approaching the unknown! How long have you started treatment? What type of myeloma it is? My one is free chain myeloma. And they monitor the FC and the BJP. 

Hi Carlos,

I have free kappa light chain myeloma. Diagnosed in December 2022 (it was a pretty miserable Christmas in the Chicken2 family that year...). 

I had Lenalidamide, Bortezomib, Daratumumab and Dexamethazone during the first half of 2023. No stem cell transplant. Been in remission ever since, confirmed just 2 days ago, and making the most of it: about to book a holiday (yet another one) this evening!

The going may be tough for now, but you can and will get through it!

Hi Ch2, oh is that what they call the IMROZ protocol? I think in my case I may stay away from the bortezomid. The others I will have dextamethasone and lenalidomida. I have the other ones, the lambda ones multiplying.  Thank you again. 

Hi Carlos,

The IMROZ clinical trial involved Lenalidomide, Bortezomib, Dexamethazone and some patients getting Isatuximab (and some not).

Isatuximab is similar to Daratumumab in that it gets the immune system to target the CD38 antigen in myeloma cells.