[hes042Participant]

Help and advise please. I am one year post SCT and six cycles of CDT. For the past twelve monthe my paraprotien levels have been at 5-6. I was hoping for a zero score and concerned that these PPlevels are not a hopeful sign. Does anyone have experience of a similar pattern or history. Many thanks.

[dmdbasParticipant]

I have had the same treatment as you but with a 2-cycle of VCD after SCT. My paraproteins are the same, about 5-7 after 21 months so I don’t think it is anything to worry about. MY consultant seems happy that they are stable – so I am happy too!

[hes042Participant]

Many thanks!!

[tonyfParticipant]

Evening, had my SCT exactly 2 years ago. Was/am on the myeloma XI trial. See my consultant every 3 months, not on any drugs have penidronate infusion every three months, it is being changed to zometa this month. My Pps never went much below 2, last reading three months ago was 4.9. Other readings must be okay because consultant has not recommended any treatment.
I feel fine, take dog out for two hour country walk daily, do as much as possible, been on holidays in UK and abroad. Can fall asleep at the drop of a hat. By the way I am 70 years old.
Regards
Tony F

[hes042Participant]

thank you so much Tony!

[dickbParticipant]

Hi there,

I had my SCT last January – 1 year ago tomorrow. Since then my PP’s have been stable at 23. Other indicators show that the MM hasn’t got any worse but they didn’t do a BMB post SCT because I didn’t want it and my Consultant agreed it wouldn’t really tell her anymore than she already knew. So, although no BMB, the course of action is to wait and see. I am drug free – apart from Zometa. I can do a lot of things I use to and I am presently applying for courses to help with a career change. I was a truck driver but the medics won’t let me do that anymore.

My advice to you is don’t get hung up so much on PP figures. There are other indicators and the consultant will look at everything before making a decision on treatment. Enjoy what you have for now and make the most of it.

Richard

[hes042Participant]

 

Thanks very much Richard. This was most helpful.

[RobertmauriceParticipant]

Hi hes042
I don’t think you have anything to worry about. The stability of the paraprotein level is much more important than the actual level. I met someone recently whose level had been around 20 for 10 years and the doctors were not going to do anything about it until it reached 30. My own case is entirely different. After both my first course of treatment , then an Sct and later on a second course of treatment I had a complete response, my paraproteins down to zero every time. Last November it climbed to 2 and my doctor was immediately concerned. In December it climbed to 8 and my consultant sprang into action. He told me that action is triggered if the rise in paraprotein is more than 5 in successive months. My kappa light chains also rose spectacularly from 47 in October to 250 in November to 870 in December. So this week I have started a new round of treatment after which he is recommending a second SCT. Anyway, you have my best wishes.

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