[susieParticipant]

Hello All

I would be very interested to hear what level paraproteins were before treatment was commenced, especially at first relapse.

Best wishes to all

susie

[tonyfParticipant]

Hi Susie, I had 26 months of no treatment, no drugs after my first SCT. My pp’s never really dropped below 2, when I relapsed they climbed very slowly, got to about 8 before treatment was restarted. Pp’s were reduced to around 2 when I had a second SCT.

Hope the above helps.

Tony F

 

[finnParticipant]

Hi Susie

My PPs were slowly climbing up and I got to 18 before the treatment was restarted. At that stage I had no symptoms at all.

[susieParticipant]

Hi Tony and Finnish

That’s interesting. I’m in biochemical relapse, have no symptoms and feel well. My PP’S have risen very slowly since I finished treatment over 2 years ago. They were at 48 some 2 weeks ago and the hospital has been saying all along when they get to 50 they will do imagining and maybe a bone marrow.

I can’t understand them letting it get that high before doing anything. Not that I want more treatment but I wonder if it’s all about cost cutting.

Best wishes

susie

[janwParticipant]

Hi Susie

I can understand your concern about whether further treatment is required with your paraprotein levels rising over the past two years. However if you do not appear to have any symptoms or organ compromise or your paraprotein levels are not rapidly rising, then it’s usually normal to be closely monitored without treatment.

It’s often a difficult decision for the consultant to make when a myeloma patient should start relapse treatment when their levels are gradually rising, but they feel fine without any new symptoms of bone pain and/or kidney issues and all of their blood results are OK. With your paraprotein levels rising, it shows your myeloma is becoming more active but we all appear to be able to function with different levels of myeloma without it causing us many problems. At the end of the day, it’s trying to give myeloma patients a quality of life as well as trying to achieve long term survival.

When I was first diagnosed in 2010, my light chains were 2300 which caused me collapsed vertebrae. Following the Sct my light chains were significantly reduced to 45 but they gradually increased over a five year period to around 1500. My consultant gave me a target of 1500 before relapse treatment would begin because he was concerned that if my light chains rose to above 2000, they might cause me further bone damage. However throughout the five years following Sct, the decision as to whether to start relapse treatment was based on my level of light chains as well as whether my blood results remained OK, and that I didn’t have additional bone pain, or kidney issues, or increased infections, or generally felt unwell or my light chain levels increased very rapidly.

What were your paraprotein levels when you started treatment some 2 years ago? Did you have any symptoms such as bone pain/lesions, kidney problems, etc at this time? Hopefully when you have an MRI scan and/or bone biopsy this will put your mind at rest as to whether your myeloma is causing you any current issues.

Best wishes
Jan

[susieParticipant]

Hi Jan

Thanks so much for your reply. I found it somewhat reassuring.

My PP’s were 64 when I first started treatment. I had been monitored for MGUS for about 3 years with a PP of around 30, when suddenly it shot up and I developed excruciating leg pain (sciatic type) from what turned out to be a large sacral plasmacytoma. My bloods have been stable all along and I had no other symptoms. Luckily my treatment sorted it all out and I’ve been free of drugs for over 2 years now.

My consultant has recently retired and I haven’t met his replacement yet. I seem to be relegated to junior doctors for clinic appointments. I find it all very unsettling.

Thanks again for your input.

Best wishes

susie

[andygParticipant]

Hi Susie,

as Jan says there is no hard and fast rules about the level of PPs when to restart or start treatment. PPs are only one factor out of several that are taken into account.

I have read posts were a tiny rise in PPs, as little as 0.2, from 1.5 has caused serious problems and I’ve also read posts of patients having well over a reading of 50 and having no problems. As is often quoted Myeloma is a very individual disease.

Every day is a gift.

Andy xx

 

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