[happyheartsfanParticipant]

Hi folks,
Not really glad to be joining you all, I am 45 and was diagonsed in September this year, 2 days before the birth of my lovely daughter Elsie. I was put on CDT Myeloma XI trial and am just into my 3rd cycle. Hope for SCT in the new year. Doctor is great but I get the feeling he is not being fully clear with me. I had a paraprotien level of 64 and am afraid it's the only time I seem to have been first in anything. None of the on line forums seem to have such "great" scores. Has anyone any experience of such paraprotien levels or do they not really matter?
Any help in assisting my wife to deal with the situation would be helpful. She is finding it very difficult to deal with the news, which I understand, but have not been as helpful as I should. Have tried eating and drinking the Myeloma to death, fun but unsuccessful. Back on the diet now. Compounded by sleepless nights with the wean (a child for those not Scottish) this is not helping. Any thoughts or ideas would be great. Also, anything I should be asking my consultant would be helpful, not in acronims, it's taken me ages to work out what you are all talking about!
As always I place my trust in God, although my wife is now doubting this, and any insight or guidance would be helpful.

[eveParticipant]

Hello Stewart

Well a very bonny welcome,and congratulations on your new baby:-)

Well MM is the last thing anyone needs or wants,but saying that on here you are going to see and hear lots of people who live with it for many years,so you will learn to cope with it.

First may I say forget that diet,you will need all your body to sustain the treatment plus the SCT,so carry on drinking and eating,most people loose a couple of stone,its the carer who puts it on (well in my case)all the food my husband asked for and would not touch:-S :'-( >:-(

May I suggest you get in touch with Scotty,and she will send you an invitation to join under 50,were there are lots of people in the same boat,they think we oldies don,t swear:-P

It all takes time and a big learning curve,take one day at a time its a long hard journey,so you need to pace yourself.As to your better half,she needs to talk,get things out of her system she is worried about,if you can get her on here,and she realises its not all doom and gloom and people can help with here worries,it will help. Eve

[meganjaneParticipant]

Hello Stewart,

I am sorry you have joined us on this forum but it is a great place to get advice. My husband Phil and I are quite new to Myeloma as he was diagnosed in May this year at the age of 43 so we are still learning everything as well, it is very confusing! I don't think the actual level of paraprotein in itself is a problem, Phil was diagnosed with a level of 32 but he also had lytic lesions on the bones and bone pain. I know of some people who have been diagnosed with higher levels but have no other symptoms. I think the paraprotein is just one part of the diagnosis and it can drop quite quickly with the treatment. If you post your question again on the Newcomers forum I am sure more people will be able to advise you, not everyone reads the under 50s forum as you are a select group.

I can imagine how hard it must be for your wife with a new baby and a new illness to deal with. It has taken me time to get used to Phil's diagnosis as we had never even heard of Myeloma. Things do get better and places like this forum are very helpful. If you or your wife have any general questions or just need to talk to someone I have found the nurses on the Myeloma Infoline very knowledgeable and friendly. The number for the infoline is at the top of every page on this website.

Megan

[happyheartsfanParticipant]

Hi Eve and Megan,

Thanks for the advice. It's hopefully a long road we are all on, I'm beginning to realise that, initial reaction of doom and gloom lifting. I will investigate the nurses thing and encourage Vanessa to join in, I really think there will be a big benefit for her discussing the disease with others.
We will all hold tight and carry on, good things will still happen. The James Bond movie was great tonight. Little things are important.
All the best, Stewart

[AlexBParticipant]

Stewart

Our youngest was 3 months old when I was diagnosed (in August). Though I realise now I had been ill for a long time before he was born. I'm not surprised you, or your wife, are finding it tough.

Part of me is so angry that my children have to have their lives disrupted. And I know my wife found it hard at the beginning to look the baby in the face.

But a few months on, he's a smiley happy positive influence in our lives and (along with his big brothers) he is simply "the reason" as far as I am concerned. With a bit of luck, you and me are going to get to do all the Dad things we had in our imagination, and we'll probably do it a whole lot better given that we're not in a position to take anything for granted.

All the best. Here if you want to swap baby stories.

Alex

[DebsParticipant]

Hi Stewart,
I echo what Alex says above….I was 34 when I was diagnosed in 2009. Our children are now 8 and 6, 3 years down the line. But they are who help me to get through those darker moments when your whole world feels upside down. That said, I can only imagine how hard it is to go through those 'exhausted' early days whilst also dealing with the diagnosis.
I didn't have a paraprotein quite as high as yours but mine rose from 30 to 50 when I finally had my SCT. But my doctor wasn't so worried about the pp levels as he was about the symptoms and in the end it was those that dictated treatment. The pp seemed to just be an indicator. But I know people with really low pp's who have needed treatment. No rhyme or reason and I think that is something that you start to get used to with myeloma.
Eve's post made me laugh about the Under 50's site 🙂 It was set up in the early days before this forum was changed. I think that you will get fantastic support from both!
Feel free to get in touch if you want to…I was also on the Myeloma XI trial (still on maintenance therapy) and had revlimid, followed by velcade before my transplant.
Take care and all my best wishes for you, Vanessa and your daughter 🙂
Debs x

[PerkymiteParticipant]

You know Debs I am sure Myeloma UK will have been really pleased with your comment "Eve's post made me laugh about the Under 50's site [u]It was set up in the early days before this forum was changed[/u]".

Kindest regards – vasbyte (aged 69 10 months and 22 days)

David

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