[sue48Participant]

 

I am on my 4th cycle of VCD, was fine at first, no side effects, protein had gone down from 24 to 19, now been told it has gone up to 28, I am thinking they could have made  mistake, got me mixed up wishful thinking I am finding it hard going now with the 4th cycle very tired and no energy, ok on my dex days, wish I could be on those all the time, they give my a boost, anyone else had problems with PP going up whilst on VCD. . I am just on the Velcade  once per week, they are talking bout increasing to 2 per week if my PP  continues to go up wish I am dreading. Any help or feedback would be appreciated.  I find this site so helpful and a great lot of people.

 

[amandaParticipant]

I am on VCD too.  I had the same course as you last year.  I went down from 4000 in light chain to 2000 not paraprotein result as they have never given that to me .   I was absolutely fine on it.  Now I am having a course of 2 injections a week instead of one and taking thalidomide too.  So far I am far. They had my blood results back one was really low and in vg p. remission the other was very high the week after .  This is still be investigated 6 weeks down the line.  They agree someone has made a mistake but don’t know which one is wrong. Done two more tests since and STILL waiting which is driving me mad.  These errors may be small to them but they make a huge difference to your well being back home to box everything and carry on is the only thing I can do at the moment.  The regime of 2 injections of VCD  and thalidomide is no problem , so don’t be worried its is fine.  Hope this has helped, bye for now, love Mandy x.

[amandaParticipant]

I would encourage boosting the level up to two injections a week.  the steroids will go up with it and you may find that will help you with your energy problem.  hope that this helps. Amanda.

[sue48Participant]

Hi Mandy

Many hanks for your  reply, helped a lot, just bothered if they put me on Thalidomide, was terrible on that when I as on the CDT, unless they can put me on a smaller dosage.  Hope everything goes well for you. Will let you know how I go on, thank you gin for your help.

 

Sue

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