[jo53Participant]

Hi Andy
Hope you had/are having a good time in Greece.

Pomalidomide is giving me problems both on efficacy and side effects. My light chains originally fell, but are now going up: not very high, last reading was 650 and if that was all I think no-one would be too worried. But the treatment is also really hitting my blood counts, especially neutrophils. There has been talk of my coming off the drug but I certainly want to keep going if I can as the alternatives seem pretty limited.
It is great to hear how well you are doing on pom, especially as I know what trouble you had with earlier treatments. Do your blood counts manage to keep stable?
Incidentally, I was diagnosed in 2012 when I was 59. I have no symptoms. Had lenalidomide (on Myeloma XI trial), SCT, no maintenance, Velcade, lenalidomide again and now pom. I do respond to treatment but, like lots of people, the response does not last long.
Best wishes Jo

 

[jo53Participant]

Hi Carol

This is my first post though I have been reading the site for some time. Am prompted to join in now to say I am shocked to hear the ‘quips’ you’ve had about pomalidomide cost. Not very professional is it, and quite understand that it is upsetting to you. Perhaps they are just trying (but failing) to lighten the mood in clinic.
Anyway, delighted to hear you, and Andy, are doing so well on pomalidomide. That’s super news. I too am on this drug, but only cycle 7 so far and with slightly mixed results.

I wonder if anyone taking pom has found their hair thinning. Mine certainly is.

Best wishes Jo

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