[morwennaParticipant]

Hello, I’m a 68 year old lady who’s had MGUS for a few years and then got diagnosed with MM in January as my paraptoteins were rapidly increasing. As I had no symptoms and was feeling well I have only started treatment now. I’m on DVTD and have just finished my first cycle. My paraptoteins have gone from 48 to 21. Is this to be expected and how low do they need to be before a SCT? The irony is I was feeling well before starting my induction treatment, but not so good on this treatment!

[glencParticipant]

Hi morwenna. I’m about to start DVTD treatment soon. Like you, I feel really well (I’m 58, go to about 4 or 5 gym classes a week!) , so it’s hard to take on board that we have to do treatment that makes us feel ill. My paraprotein was only 18 at the last blood test but light chain ratio 127, which is the criterion determining the decision to treat in my case. It sounds like your treatment is working well. My friend has just been through the whole process including SCT and I think her results were pretty low after DVTD but maybe not quite zero, but I’m not sure whether there’s an official number. Her results are definitely all at 0 post SCT and she’s doing quite well. I hope the treatment is not affecting you too badly. I’m feeling quite anxious waiting for my start date!

[morwennaParticipant]

Yes I felt very anxious before treatment not knowing what the side effects will be and how you will respond. My anxious feelings definitely reduced once I started treatment. Hope yours do too.

[jmorrisParticipant]

I feel in a similar position to you two. I’m 70, had MGUS for 8 years but light chain ratio went up in the summer and some lytic lesions appeared on MRI scan. I too go to the gym a lot and so to be told treatment was needed was a shock. My first reaction was to say ‘no’ because i feel so fit but then the prognosis without treatment was pointed out to me! I had my first treatment on Monday which was mixed. I had a reaction to Dara but that was managed well (I had vomiting, diarrhoea and back pain). I also woke with a rash around the velcade site on Tuesday morning! The lovely 83 year old man next to me had no side effects at all! I was just unlucky I think. The bag of pills I brought home was a bit of a shock so it has all felt a bit overwhelming emotionally and physically. However, I’m feeling okay and think that now I know what might happen I can deal with it! I managed two gym classes this week and a 5 mile walk. Hoping to get a swim in the sea on Saturday if the weather improves. Good luck to you both.

[mulberryParticipant]

That’s a good reduction of paraproteins in one cycle morwenna, I was told 30% is excellent.
The total reduction is likely to reduce each cycle, but the aim is to get to zero paraproteins, or as near as possible to that, before SCT. I think usually is under 3 or so, but there are exceptions.

[raelParticipant]

Hi Morwenna.My husband was diagnosed with MM over 5 years ago.His paraproteins were around 35. After 6 months of treatment his paraproteins reduced to 15.They still went ahead with SCT.This reduced his paraproteins to 13/14. We were worried that his paraproteins didn’t go into single figures or zero as we thought they would. He was told that this was his level and hopefully it would remain stable. They remained stable for almost 2 years and he felt great. They then started to climb so he was put on another treatment, Carfilzomib. His paraproteins reduced significantly after one treatment and are now below 3 which they say is undetectable. He has remained stable for over 2 years and counting.Again he feels great. Everybody’s journey is different and folk respond differently to different treatments. We got so hung up on paraproteins levels! Hope all goes well for you

[morwennaParticipant]

Thanks Rael that’s good to hear. I think I’m a bit too hung up on paraptoteins,and I’m beginning to appreciate that we all have different levels.

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