[bandityogaParticipant]

My hubby Ian has finished his 2nd cycle of velcade + dex . After his first cycle his FLC dropped to 567 from 898 but have now risen to 679 after his 2nd cycle. Consultant thinks it may be a blip and he is continuing on velcade for 3rd cycle. Has anyone else experienced this?

Maureen

[PerkymiteParticipant]

Hi Maureen, cannot help you there I did only 3 cycles of Velcade and got pulled off it, I had PN bad.

However the good news is I went onto Revlimid and at my last consultation, Friday last, I was told that “On Paper (i.e. my blood reading) I am perfectly normal now.

Kindest regards – vasbyte

David

[meganjaneParticipant]

Hi Maureen,

I can’t help too much as my husband Phil’s MM is monitored by paraproteins but two months ago his Lambda Light Chains went up to 13.9 which threw the ratio out of normal range. I know these are tiny values but his consultant said it was probably just a blip as Phil actually has Kappa Light Chain Myeloma (although after the first cycle of treatement in June 2012 the Kappa returned to normal). The next Light Chain test Phil had showed the Lambda back in normal range so for Phil it was just a blip.

I hope at the end of cycle 3 Ian sees a drop in the FLC numbers again.

Megan

[eveParticipant]

Hi Maureen

Velcade takes a little time to get going,so try not to worry,light chains,can vary,we no longer go by light chains,as they did not show a true reading after Thalidomide ,they read normal,but BMB showed it had gone up to 80 percent in bones.
I now tend to go on how Slim feels in himself then wait for BMB results,his has gone down to 10 present in bones,but as you know,we have extra problems.

At the end of the day,you will become an expert on Ian,so use you own judgement,Love Eve

[bandityogaParticipant]

Hi David, Megan and Eve

Thanks for your replies. I spoke to Maggie and she informed me that as Ian had an infection it is possible that is why the FLC could have risen. I also asked the consultant if he would give Ian cyclophosphamide he said no as if his FLC rise again he will change to revlimid. Maggie advised me to go for a second opinion if this happens.

On the good side , Ian is feeling so much better and walking more. We have booked a holiday to Cornwall for a week at the end of the month. Hope we get good weather.

Maureen x

[andygParticipant]

Hi Maureen
I was pulled off Velcade after 2 cycles, I was on PAD, as it was deemed not to be working I think it’s the NICE guidelines at the time. Though they may of changed since I was on it.
I had DTPace after PAD and that didn’t work for me either as you know I’ve not had much luck with the different treatment tut. I then went on to Revilimid and although I never got into remission it kept me stable for 22 cycles before failing me. Cyclophosphamide was added to the mix after my first few cycles.
Blips do happen Maureen and there can be several causes from infections to a mistake in the lab. It’s trends that are more important so Ian’s next results will probably be the important results.
Hope your trip down south goes well and the weather stays fine.

Every day is a gift

Love Andy xx

[Author]

Posts