[smilerParticipant]

good morning

my dad of 80 has reached a plateau following 6 rounds of velcade and I would like to ask if anyone was else came of all their meds during this stage or remained on any until myeloma returned.Many thanks

[rebeccaRParticipant]

Hi – as your father has plateaued with safe numbers not requiring further treatment then it is normal to come off all meds and hopefully resume a good quality drug free life. Unless on a trial which involves maintenance therapy we are not in a position in the UK to have that option. I have not had the option of small dose maintenance BUT on relapse of increasing numbers your father will no doubt go on a small dose of continuing treatment until that ceases to work – so I guess we get this option at some stage just not upfront without a trial. I am glad now I wasn’t given a maintenance option as even small doses of therapy will have some side effects eg tiredness, more prone to infections etc impacting on quality of life. I hope your father regains his energy levels soon (velcade is soooo tiring) and lives life well after his ordeal.
Rebecca

[susieParticipant]

Hi,

I am on my 8th & last cycle of velcade, melphalan, & prednisolone and I too have plateaued at 11, from 54. I am rather disappointed it hasn’t, at least, reached single figures. I haven’t found the treatment too bad after the first two cycles.

I intend to take Circumin, with agreement from my consultant, in the hope it will keep things in check. If it works all the good, if it doesn’t no harm. It’s such a shame that maintenance is not approved in the uk. Rather short sighted I think.

Rebecca- I hope your dad gets a long time before things become active again. Take care.

susie

[Author]

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