[bubbles1978Participant]

Hi all

Just after some advice really, my MIL got diagnosed with MM last summer after falling in the high street and damaging her hip. It turns out that the damage was due to the bone wastage caused by MM. Anyway, finally home after a 3 week stint in hospital, and on a 6 month course of chemo tablets and thalidamide and calcium, told in december gone into remission with a count of 3 which was good news.
Appointment 10 weeks later to check progress, count gone up to 6 in this time, advised a session of radiotherapy as pain was returning in the hip area again. After the doctors forgot about her and it was chased up she finally had her radiotherapy just last week. Today she has been back to the specialist and again the count has double to 12! I don't understand much about counts so if anyone can help please advise! Last time at 6 the consultant said it could be levelling out, but I'm worried about her state of mind with the doubling up each time, as I don't want her thinking its a losing battle! Could the radiothrapy she had last week help this? FYI her initial count on admittance to hospital was 86

[brochoParticipant]

Hi I am not sure I can offer any useful advice really but a count of 12 pp is not too high .I am sure your mil doctors will be looking at the right time to offer more treatment, they were probably waiting till after the radiotherapy As far as I know radiotherapy does not affect the paraprotein levels . It might put your minds at rest if you ring the specialist nurse who will be up to speed with her treatment and have access to the latest test results Hope you get some answers soon best wishes Bridget

[gina45Participant]

My mum is on monitoring bloods at the moment, as her other bloods are ok they are not treating her. She goes to hospital every 8 weeks. Her pp is 33.5 at the moment and this has steadily risen from 18. They are not overly worried as the myeloma is not in her bones at the moment, they say her cancer is low scale. We are very positive about this and have been told unless her other bloods cause problems or there is a significant rise in her pps they will carry on and monitor. Im sure you mil is ok, as soon as the pps rise quite significant then i assume they will monitor her.
Positive thinking thats what my mum says. She was diagnosed with mm in 2009 and fingers crossed is doing ok .
Hope your mil is ok, take care Gina x

[kaychappersParticipant]

Hi there. I agree with the others. My PP was 29 when I was diagnosed and rose to 36, but the reason they started treatment was because I became quite severely anaemic. I think they start treatment only when, as you say, the other bloods or bones are affected. For reassurance I would phone the Myeloma helpline they are so helpful Kay x

[jillsParticipant]

Hi,

Just to say that my Mum (age 82) was diagnosed in 2007 and her PP was 21 – treatment started when it went up to 40. It then very gradually reduced to 11 and is currently around 12 at each visit – she has never achieved 0 (complete remission) which apparently is very unusual. A reduction from 86 to 3 sounds very impressive! Everyone else who has comment is right – the consultant looks at the whole picture, and if other bloods are OK then there seems to be no rush to treat aggressively, particularly among older patients. Mum is currently described as 'at plateau' and just takes a daily low dose of cyclophosphamide, which seems to be keeping things at bay but no significant side effects.
Jill.

[JetParticipant]

Hi Bubbles

While I can see that there are a lot of very supportive, helpful people on this site, who will do their very best to answer queries and share their own experiences, I would really strongly recommend that you and MIL ask as many questions as you can think of, of your doctor/consultant. They really are the best people to explain what's happening and why.

I don't know what your medics are like, but I have found my consultant and in particular the specialist nurses more than helpful and supportive and willing to answer all sorts of questions, from purely factual medical stuff to the more personal/emotional things.

Good luck!
Jet

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