[PhilKellyParticipant]

Or drop me a note and I can invite you in at
phil.kelly2@btinternet.com

Phil

[wendyduffieldParticipant]

Hi phil I would like to join the under 50's group. At 49 I think I just qualify. I was diagnosed with light chain myeloma on 24th Dec following admission to hospital with kidney failure. I am still coming to terms with it and started treatment with CTD about a week later but I thought better sooner than later.Its all been such a shock and I cant take it in
but I suppose its early days.

[tomParticipant]

Hi Wendy

Sorry to hear you have to join us 🙁
But its a great Gang on here and the under 50's I am in both and am 55 🙂

Have you sent your Email to Phil :::: phil.kelly2@btinternet.com

Or Scotty :::: c.scott@added-value.com,

And you will soon be in the Under 50's

Any Q's just ask

Tom "Onwards and Upwards" xx

[PhilKellyParticipant]

Hi Wendy and sorry you need to join the gang…just send me a note at phil.kelly2@btintinternet.com
and you will receive an invite to join. I just need your email address to do so. Phil

[ScottyParticipant]

Hi Wendy, I see Phil has you within his sights, so I look forward to you joining the Under 50s gang soon. And don't worry 50 is just a vague guideline – if you were 54 you'd be just as welcome! Scotty

[JetParticipant]

Hi Wendy

I had to respond to your note, as I am in a very similar situation. I got ill with kidney failure on 25 Dec and was admitted with hypercalcaemia on 1 Feb, then diagnosed with MM on 4 Feb after a bone marrow biopsy earlier that day. They put me on Dexamethasone (one part of the RCD treatment) that same day, so I was totally flying high while trying to get my head around the diagnosis.

I'm based in Nottingham and being treated by a great team at the Centre for Clinical Haematology there.

I'm sure we will connect again on here. Good luck with everything!

Jet

P.S. If anyone is interested, I am writing a blog about my experiences of living with myeloma. It feels very therapeutic at this stage: http://jetblackliving.wordpress.com/

[BADGERParticipant]

hello jET

Iam not in the under 50's group as I am a bit older but I read your post then your blog you seem to have had the same experiance as me I was diagnosed jan 2009 my kidneys have not recovered enough for an SCT this was my my choise as the chemo involved with the transplant could have destroyed my kidneys completely I could not bare the thought of being on dialysis for the rest of my life I have been well upto now after the initial CDT which I coped with very well if you have any questions please ask

Kind regards Jo 😎

[BoltonAndyParticipant]

Anyone fancy starting an under 30's group? I get the feeling I'm a rare breed!

[brochoParticipant]

Hi Andy I think you might be right there , an under 30 group would be a very exclusive one !! I should think you were pretty peed off when they gave you the diagnosis, how old were you?!! To be honest I was 51 and still thought I was too young to have myeloma Take care Bridget

[BoltonAndyParticipant]

Hi Bridget,

I turned 29 in January and was diagnosed at the end of Feb….. Bit of a shock, but hey ho…. One must soldier on!

If you hear of any other whippersnappers, I'd be interested to know!

Cheers, Andy

[DebsParticipant]

Hi Andy

Sorry to hear you got the diagnosis so young. I was 34 when diagnosed in 2009 and felt like it was really unfair!!
Hope you're being looked after well…think you'll like the under 50 site though if you email Scotty!!

Debs x

[brochoParticipant]

Hi Andy we we are all whippersnappers really!! As Debs said the under 50 site is great and I think you will find it helpful but I will look out for anymore younguns ! love Bridget

[RussellParticipant]

Hi Andy,

I found out a few days ago I have Myeloma. I went to my GP with a shoulder injury and it wasn't until two MRI's, CT's xrays and a bone marrow sample (which hurt) it was discovered to be Myeloma. I am yet to find out what stage I am at and what options that are open to be but I will find out on Friday. I am 28 and keep thinking I will wake up with this all being a dream. I honestly do not know what to even expect reading things on the Internet about survival rates which are scarring the he'll out of me! I haven't started Chemo yet.

All I hear is that myeloma sufferers average age is 70 which doesn't make me feel any better. My upper torso hurts I can't run because if pain despite pain killers,

Thanks worryingly

Russell

[brochoParticipant]

Hi Russell you must be reeling from the shock of hearing you have myeloma .The internet does throw up some scary facts , be careful about searching on there as information is often incorrect or out of date The average age is much lower than 70 now and although you are very young at 28 there are quite a few under 50s and several under30s , so you are not alone Try and ignore the survival rates too , that info is definitely out of date now there are so many new drugs and treatments . Myeloma is still incurable but treatments such as stem cell transplants can give you complete remission for many many years and being young and fitter gives you an advantageWhen you next see your consultant you will probably be given an outline of how they plan to start your treatment , relieving your pain will be top priority, there are several painkillers they can use and infusions to strengthen your bones and relieve pain too The helpline on this site is great if you have any specific questions and the under fifties group as well as the general discussion forum is a great place for support Life will get better Russell so hang in there and my advice would be to stick to this site for accurate info , they have several information packs they can send you too By the way I am not a seventy year old man either !!I was diagnosed at 51 , five years ago and I am still going strong! Bridget

[eveParticipant]

Hi Russell
Welcome to a club nobody wants to be in!! but we are and it is not only informative,but some times funny,but you will have more fun,in the under fifties ,they are allowed to swear when you get angry ,older ones swear in spaces h-e-l-l.!!:-P
I see it was 4 am when you posted,we have all been there at that time,its when the demons come out,all soughts of things go through your mind not very nice ones,bit early for G&T as well;-)

I am a carer,so its a big club. mixtures daughters,sons,wives and husband.and then the important person,the person who is Suffering with Myeloma.They all can help you,no your journey.
Any Questions just ask away.Sounds as if you have been caught early.
Good Luck Eve

[Author]

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