myeloma relapse

Hi.  Mandy’s bloke.  Vespa here       I am pretty much in the same position as you.  19 months post stem cell.   In remission not on any maintenance and now on 4 month blood tests and appointments.       You have done great going back to work.     I think if all of us with MM are honest  we think about relapse.       I did discuss this with my hematologist.  He could not tell me if and when!   But he did add that the new second stage medication recently approved by NICE are ground breaking and shown great results with no further complications to most patients.        Being pragmatic my wife and I have taken plans for the future with wills etc       May your good health continue and keep on with positive thoughts   One thing that helps me is helping others.    Best wishes. Kevin . 

Hi Kevin ,

Do you mind me asking if you are on any kind of trials , l'm on a trial called radar  nearly everybody is on some kind of maintenance treatment ( Lalidomide /isatuximab infusions ), its definitely helps to talk to other in the same position.

Thanks David

Hi.  David.     Not on anything. I was on Lenolidamide but came off of it due to severe skin reaction.      My only. Gripe. Pain is neuropathy usually worse in the pm.   3-4 pm.  And I take pregablin for it.      I have hip bone lesions but  not painful just weak.   So gave up my marathon training 

Hi Mandy's bloke,

You ask about the signs of myeloma returning. Although that hasn't happened to me yet (still on my first remission) I did ask my doctor that. He said that - apart from it showing up in blood tests - from the patient perspective the main indicator if any would be bone pain.

You also ask how long your remission would be for. No one can know that. 

Not long after my diagnosis, I had read enough medical myeloma research papers to estimate my own life expectancy. To be precise, the median estimate of how long I had left, based on treatments then being used. I asked my doctor the same thing: he independently came up with the same figure.

Since then, I have done much better than expected, and plenty of new treatments have been developed, anyway. That estimate didn't mean much in the end.

Also, you can do something about it, by living a healthy lifestyle (nutrition, exercise, keeping stress down etc).

I personally think that the most important thing is to enjoy life as much as possible, one day at a time. Everyone is mortal. People with myeloma are more aware of that than average. That makes life - including the little things - all the more precious.