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Hi Russel
I feel for you and your family who must be reeling from a diagnosis of the b stard illness. I hope you are receiving the best of care that is available, and if not let us know and we will keep you right.
A diagnosis of this kind is mind shattering, and I would be lying if all of us did not feel devastated at the time of diagnosis.
But its not all doom and gloom. Especialy not for someone as young and resliliant as you are.
The prognosis is far better for young people than for older people and I would direct you to the home page of this site and The latest news item on Prognostic Model which I would push for if possible in your area.
Investigate it further and it will take your mind into the world of myeloma that you have just entered.
I wish you all the best and hope your pain is sorted soon
MIn
Wishing you all the best for your appointment today, Russell. I hope your consultant will be able to reassure you as to what steps they suggest be taken first, and that your treatment progresses uneventfully.
Most areas have a support group I think, where you can get together with others in the same boat as you are and find out a bit about their experiences to help settle things in your mind, so do ask about that if you think it will help you.
Another thing I have done since nearly the beginning is to take a small voice recorder in with me so I can get a record of what was said to listen to afterwards and sort out just what was suggested and planned, as I never seem to remember everything.
Elizabeth
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Hi Elizabeth
I read your post before on the little recorder and I got one. Brilliant idea. Thanks for advice.
Take care
Russel good luck for your appointment.
Love Jean x
Hi Everyone, thankyou so much for your support it really does make a difference. i feel like my family and friends are taking it worse then me!
Ok i have had a call from my Hematologist who took a Bone marrow sample, Aspirit and blood samples? i think thats what it was, well he took three different things from me!
right im not sure what significance this has but he has said from looking at the Aspirate taken from my bone marrow there is little sign of Myeloma but he has said he needs to wait on the Bone marrow biopsy before he can make a 100% diagnosis. he said to not get too excited that he might not have taken enough cells but the bone marrow results will provide him with the information needed which wont be available until Tuesday. Is this good? or should i really not get my hopes up? He is confused why nothing has showed up as scans etc show hot spots on my skeleton etc.
he did say he would refer me back to the shoulder speacilist if nothing was found so he can do a biopsy on my should which showed up the initial blobs on my bones.
There is so much information to digest i dont know what questions to ask!
thanks again
Russell
Also in my tests nothing was found in my Urine??
Also the Plasma cells where less then 5% from the Asiprate sample?
Hi Russell
Bone Marrow is the only way to confirm Myeloma 100% it does show in bloods sometimes and sometimes it only shows in Urine there is about 5 different types of Myeloma,and there are related conditions.see related topics!!!
As I said you are young,looks if they have found it early if you look at home page and go into video,s there is a lady there who has had it for 23 years,and i know someone who,s husband lived 18 years with it.
So there,s it lots of reasons to remain positive it is when you do not know any thing about mm,that,s the scary bit.
Good luck Eve
Hi Russell
My advise would be. Worry when you have something to worry about.
Maybe you have a smouldering kind of MM that has been found early and you can get on with your life for quite some time.
If you have to wait for the results from your bone marrow I imagine you are being treated at a smaller hospital as most of the big ones have there own equipment,
As a guide when my husband had a bone marrow sample taken it was 11am and the Dr said it would be about a week to get the results. Yet at 7pm he was certain it was MM.
If it takes while it cos they are doing ALL of the tests as they need to rule it out.
So Far so good for you and hope you dont have to wait too long to get on with your life and put this blip behind you. Enjoy your weekend while you can as if you have to start medication, life will be suspended as you know it for a while.
By that I mean wild nights out with the boys, as you will get very tired!
Regards
MIn
Hi Russell,
So sorry that you've had to come and join us on here but hopefully IF you get the official MM diagnosis, you can come to lean on all of us for help and support. I was 34 when I was diagnosed 2 years ago with smouldering myeloma. I then started treatment in 2010 and had my transplant just over a month ago.
It is tough going and you will have loads of questions, but hopefully all of us on here can help make your journey easier…I know that I have found the forum's support amazing, and it has really helped me in my journey. The Under 50's site is helpful for those work related/ life related issues, but the main group on here are also great friends and support. I can't imagine having gone through the last 2 years without it all…so welcome and ask away!
Take care and hope you get some definitives to work with soon
Debs x
Hi Russell
Sorry you had to join us:-( but its the best place for info and a shoulder to lean on as and when you need it.
Hope you get the information "Is It, Isn't it" pretty soon as I know waiting for the week was bad enough for me.
Take no notice of many of the web sites about MM most are out of date and scary. This one is well up to date and has some great members.
Stick with it M8 it will work out 🙂
Tom "Onwards and Upwards"
Hi Russell,
I'm a little put out that you've pinched the title of 'youngest myeloma fella' from me (maybe… I hope not). sorry about the delayed response – i'm usually pretty hot on checking the e-mails but i've been busy boy lately! Don't sweat it and stay positive, if it all gets confirmed then you're fortunate that they caught it early and there is a lot going on with with treatment and the like. It's a bit of a shock of course, Its a bit like winning the lottery in reverse! I was diagnosed late on… Got that flu last winter and just never seemed to get better, went to get myself some new specs and eye test and 2 hours later was at the hospital being told i'd ruptured a membrane behind my eye ( a rather telling symptom of high protein in the blood. 24 hours later got confirmed (that bone marrow thingy was quite sore!). God bless tesco's I say.
It's very difficult to get your head around, I had a couple of horrible complications; namely vision problems ( now cleared up 90% following treatment) and would you believe it, a fractured verterbrae (getting yorkies out of the oven… whilst drunk I may add!) and as these other things directly affected my day to day more than my newly diagnosed condition, to be honest i've only just starting dealing with the myeloma factor as i've been getting bsck up to speed and back to some sense of normality.
I could talk all night about the feelings and experiences I've encountered in the past few months, but this isn't a forum about my life story so I shall stop there! If however you want to ask any questions or get an opinion or even just vent and have a rant, myself and the other folk on here will most definitely listen and help where possible- apologies to those who have earlier offered words of support to no response… I'm not an ass…. all the time! it's appreciated and to be honest I'm only just getting into the zone. thanks for your kind words. I Don't know where you're based Russell, but I'm in Bolton and am recieving treatment in Manchester and if you want to get sloshed sometime…. I'm there… boom!
Cheers and I'm crossing my fingers for you!
Andy
Hi I hope in the nicest possible way that Russell and Andy end up not joining us as you do not have mm just a slight blip in perfect health. Good luck Gill
Hi Russel
I was diagnosed about 11 days ago now and I am 39 so we not that far off in age i think.Theirs a shed load to take in for sure but this is definitely a site to find good sold support and some possibles answers to questions you have.Its still all new to me plates spinning here and there,medication,hospital apps,work,social life….Today was my first day out on my own..wow what a release!! but it still felt a little weird but good.Some of the simple things i took for granted like going out for a walk have becoming abit like a "check" step meaning mm-mm yes I can still do that,and yes i can still drive suppose with i am saying is building back the confidence again.I live on the Yorks /lancs border so not for from you and Andy.
Cheers Paul, and as Andy says if you fancy a pint I am there to
Paul
Hi folks,
Goodness its been a while since I've been on here – a combination of a frantic (and fabulous) few months getting married, going on honeymoon – and then back down to earth with a bump, back at work. As well as being lucky enough to not be on treatment currently, so I've been squeezing every drop out of life till it changes again, as my scores are starting to creep back up, but are currently pretty much stable…ish.
So – just wanted to extend a warm welcome to any fellow Under 50-ers (or thereabouts) and to reiterate Tom's kind comments that if anyone wants to join the Under 50s group which we have on a separate site, you are most welcome to. This main Myeloma site is still utterly awesome and a great place to seek and offer support, and the other Under 50s site is intended to be a place where we slightly more 'youngie' people can perhaps offer some even more 'spot on' support and thoughts for each other as we're all in a similar boat.
Just drop me a line if you're keen – new email address (now that I have slightly madly changed my legal name to Scotty Hawkes on marriage!) is s.hawkes@added-value.com, and I can wing you an invite when I hear from you.
All the best guys – wishinbg everyone some really good times amid the darker ones. Onwards and upwards (or in my case, off to see Harry Potter tonight), Scotty.
Beer O'clock…. now thats my kind of support group!
Just bumping this up for newcomers who may not be aware of the under 50s site Bridget
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