[lexiParticipant]

Hi
My mum was diagnosed with smouldering mylenoma last year she is 85 now and still quite fit for her age. I cant really discuss anything with my mums consultant when I go in with her as she reaaly does not want to know and is still in denial about her diagnosis probably her way of coping.

When we were at the hospital yesterday her consultant said her paraprotein was 28 this means nothing to me is this high ?

she does have anemia and seems to be getting tired more easily iron tablets did not help so she does not take anything now.

What is life expectancy for someone in this stage and how quickly will full blown mylenoma develop.

I really would appreciate some information.

[eveParticipant]

Hi Lexi

I am up at this terrible hour,so i thought I would reply to your posting.

First may I welcome you,we are usually a happy bunch on here,who have either got Myeloma or are carers.

May i say,Smouldering Myeloma may never go into Myeloma,also some people have it for many many years,Ted on here is in his eighties and although his health is a little bit under par,does very well.
You need to speak to Ellen to relieve your fears,but i am sure lots of people will reply to you and help you through this difficult time. Eve

[lexiParticipant]

Hi Eve
Thank you for your reply.
I did not realise how many people are affected by Myeloma until Mum was diagnosed with it.
Do you know who would know about paraprotein levels and what they mean ?

Best Wishes
Lexi

[teds31Participant]

Hi Lexi, My names Ted and I'm 80, I was diagnosed with smoldering MM about 5 years ago,I dont have many symptoms and carry on a fairly normal life for my age.It is difficult to give advice as you will see if you read more of the posts on here,we all are affected differantly ,you would be well advised to ask about the Paraproteins from a doctor, the little I know is that mine started about 16-17 and they are now about 12 I think. Its no good though comparing one persons PP to some one else as we are all differant. Most people with smoldering MM dont have any treatment and they just keep a close eye on you ,I go to the out patients clinic about every 3 months,due to go again at the end of May.As my consultant told me just enjoy life and dont worry too much,keep posting and we will all try to help. Ted

[andygParticipant]

Hi Lexi.
I have multiple myeloma and my paraprotein level was 41 at last test! I started at 50 in oct 2011 and my paraproteins have proved a challenge to my medical team and I. The main thing to remember is everyone has a different journey and reacts differently to treatment. The target for me is to get below 10 and have a stem cell transplant but that seems a long way off for me at the moment – with others they get there quite quickly. Like you'll be told over and over everyone's journey is different.
Oh sorry forgot to welcome you to the forum 😉 it is very supportive, infomative and friendly.

Take care
Andy x

[teds31Participant]

Hi Lexi, I forgot to mention this site which is very good for answers to Smoldering MM you could keep it on your computer or print it out to show to others who may be interested. Ted
http://www.myeloma.org.uk/patient-services/myeloma-uk-publications/infosheets/smouldering-myeloma/

[lexiParticipant]

Hi Everyone
Thank you for your replies. Its nice to be able to chat to people who are going through the same thing. My mum has not taken the news to well so its good just to hear how other people are coping with this illness.
Take Care to all of you going through this hard time x
Lexi

[jillsParticipant]

Hi Lexi,

My Mum is 83 and was diagnosed in 2007. She did not take the news well either and was quite depressed for a while, particularly as my stepdad had only just passed away. She also finds it hard to understand the disease and gets a bit confused so she needs a lot of help with it all from me. She had no treatment for a while, just monitoring every three months but her paraproteins (which are the indicators of myeloma in the blood) started to rise slightly (started at 17 and rose to 36) so her consultant started her on course of chemotherapy which was tablets – Cyclophosphamide, Dexamethasone and Thalidomide (CDT for short). You Mum's consultant will assess the paraproteins over a period of time to see if they are rising and there seems to be different approaches – some consultants will begin treatment earlier with the aim of tackling things before any symptoms develop. If your Mum needs treatment they will assess what to do on the basis of her general health, this is normally about kidney function, bone damage, anaemia etc. After initial adjustments to the various doses my Mum had a good response to the CTD and was in plateau for about two years which meant the disease was stable. She has recently started a course of Velcade injections as her levels started to creep up again (from 12 to 17) which is inevitable really as there is no cure for myeloma. With elderly people the aim is to keep them as symptom free as possible without giving medication at levels which cause unacceptable side effects. You mention anaemia – my Mum had a small blood transfusion this week for that and she is feeling very much brighter as anaemia can make you feel very low. Iron tablets are not the best option as they cause other tummy troubles. Mum is now also having a bone strengthening infusion (zoledronic acid)once a month which helps to bind calcium to the bones and keep them stronger – this is actually a very useful thing for all elderly women).
So there are lots of things that can help if the disease progresses and they are all available even to older patients provided they are fit enough to cope. In terms of long term outlook I believe it used to be much shorter but all the new treatments make a big difference and certainly my Mum is still reasonably fit and health, mobile and doing very well for her age.
Hope this helps but do ask any questions and I will help if I can! Remember to look after yourself as well as it can be hard for carers too.

Take care,

Jill

[lexiParticipant]

Hi Jill

Thank you for taking the time to reply to my queries. My mum just got a letter from her consultant today to say the last paraprotein test was 22 and previously it had been 28 so that is a bit of an improvement. She goes back in July and if it remains the same then he said he would extend the time to 6 months.
She takes Sodium Clodronate daily but apart from that she has not had any treatment since her very first diagnosis when she had a blood transfusion but it did not make her feel any better so they said they would not do anymore apparently some people dont respond.
Am I right in thinking that it will eventually turn into full blown mylenoma but no one can predict when?

Thank you again for your help its nice to be able to chat to someone.

Take Care Hope your Mum stays well
All the best Lexi x

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