[clarabellParticipant]

Hi Tracey,

Thanks for your post back, my Dad is 62. Today we received the first of his results which read as follows 18/1/11 results from our visit to the Royal Free, CTD was delayed due to a chest infection.

18/1/11 Kappa 13.1 Lambda 502.0 Ratio 0.03
27/1/11 Kappa 11.6 Lambda 485.0 Ratio 0.02
22/3/11 Kappa 15.1 Lambda 137.0 Ratio 0.11

Not fully understanding what the differences mean we called the Royal Free but couldn't get to speak to our contact there. Obviously the Lambda has really decreased but Kappa and ratio has increased.

Like you my Dad is only 1 week into his second lot of CTD. He has amyloid on his nerve ends, mouth and a small amount on his kidneys, we are going in May as part of the Achemy study, there was no mention of SCT at our initial visit but this may have been due to the fact that Dads haematologist had failed to notify the Royal Free or us that he had MM at the time of our visit. Dads haematologist has mentioned SCT but I believe this is for the MM. Dads bone marrow results are at the same range as yourself at 20-30%. We do find that our local hospital only look at the MM and don't look at the amyloid which is frustrating as they are linked.

Have you had a CT scan? Dads showed a mass on his hip and he has just had 5 days of RT to keep it contained.

He also has fluid retention and is finding it really difficult to get the 3 litres of fluid down his neck every day and is also finding the Dex a nightmare!

I am interested in your description of IGA Myeloma ( I googled it!) and wasn't aware there were different types, I'm going to ask at Dads hospital appointment next week which type my Dad has. Unforunately minimum information is given unless we ask at our local hospital.

I don't know about you but my Dad seems to struggle with the fact that he can't keep up socially the way he used to (everyone calls him Peter Pan) he only manages out for 1-2 hours at the weekend where he would be out for the duration usually. Hopefully the CTD is having the right effect or next month he'll be put onto something else and then he can try and gain some normality in life again.

I'll keep up with your posts and will update in May after visiting the RFree again. I really do wish the best as its difficult dealing with MM with out having Amyloid and nephrotic syndrome thrown in!

Keep in touch through your journey and good luck

Love Clara xxxxxxxx

[adminKeymaster]

Hi Clara
Thanks for your Dad's update – it does help to compare notes with someone in a similar situation. I've just had an appt through for my next 2 day assessment and scan at the Royal Free for the middle of August. Also had my blood results back after my first cycle of CTD – lambda free light chains have reduced from 152 to 43 so that seems encouraging! I haven't had a CT scan, but am waiting for a skeletal survey, at my request. I didnt know about bone damage until I visited this site and it hadn't been mentioned to me by any of the doctors. I got the impression that if I had bone damage, I'd know about it – ridiculous surely?!

Min – The fluid restriction is a nightmare, but it was actually the Royal Free who is directing my Amyloidosis treatment who have imposed it upon me. I'm allowed only 1.5 litres of fluid a day, which is so tough! I had a nephrology clinic appt this week and they have said that the 'odd indiscretion" is perfectly fine, which is good news as I am going to a wedding next month, which will now be much more enjoyable! Glad to hear that Peter's ankles are back to normal. I've had to up the ferusimide to 120 mg a day. Nephrologist reckons I'm carrying at least a stone in fluid – ouch! I can almost hear it sloshing around as I walk! Good to hear about your friend and their Amyloidosis – stories like these are very encouraging!

Nigel – I'm trying to be very careful with my appetite- if I put on any extra fat in addition to the fluid retention, I'll be in a sartorial wilderness. I've found that since treatment I've gone off savoury foods and crave chocolate, ice cream and fruity things so do need to be careful!

Tracey x

[clarabellParticipant]

Hi Tracey,

Thats great news about the reduction in your light chains, it certainly is encouraging and makes the side effects of CTD worth it to see them reducing in such high numbers. My Dad got his appointment in for August 10th/11th at the royal free so we cross paths!
It is great to share info, after reading your post i googled nephrotic syndrome as I was sure I had came across that before and low and behold after checking my Dads assesment from the Royal Free to our local hospital which we were given a copy of it said he had nephrotic syndrome and CKD stage 2. I presume that this isn't severe as no one has picked up on it but I will mention it at our hospital appointment next week when he goes for his MM review.
Like yourself I read about a skeletal survey and mentioned it to Dads consultant who said "oh have you not had one? i'll send you for one now" They use this as a marker for measuring your bones. It might be helpful to ask for a CT scan just to give you peace of mind. My Dad had one and they didn't check the results until I questioned it and they then seen that he had a mass on his hip, which had been put down as sciatica!
Dad has been told he can have an odd drink and now has a guiness or a glass of red wine which doesn't hinder him any! So enjoy a refreshment at your wedding next month,

Best Wishes Clara xxxx

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