[noelParticipant]

My first post here and so just wanted to say hi to everyone. I was diagnosed in July of last year 2013 with stage 2 MM. I was 44 years old.

My paraprotein was initially 31 and rose to 41 just before treatment began and I had a lot of bone pain especially in the sternum and ribs. I went through 8 cycles of two different types of treatment before I was ready for my stem cell transplant which I had in April of this year.

Everything went ok and I have recovered well from the process and my 6 month post SCT marrow biopsy is clear but with Myeloma nothing is ever that straight forward. My Myeloma is categorised as high risk and because of this it has been recommended that I have an allograft transplant. The process for this is now in motion; a donor has been identified and it looks like the transplant will happen at the end of Jan next year.

I found this website very soon after being diagnosed and it has been a great help throughout my journey so far and I just wanted to say thanks to everyone for that.

[lizemParticipant]

Hi. Just to say, keep cheerful and hopeful, as it sounds as if you are. You have survived an awful lot so far and new treatments are coming along all the time. My husband was diagnosed in 2003, and after five emergency admissions and two lots of chemo is still going, (although not very strongly!) at 83! All the best Liz

[HarmonyParticipant]

Hello Noel,

I wish you well – fingers crossed for a positive outcome.

[skinnerParticipant]

My Dad was diagnosed today with myeloma 03/12/2014.

Still in shock, but nice to know new treatments for this disease are appearing.

[WillisboyParticipant]

Noel,

Treatments are getting better all of the time.

My Myeloma was described as aggressive, I was diagnosed in March 2013. Received the SCT November 2013. Returned to work (part time) in June 2014 and will return to full hours in January.

Keep being positive and remember those still in remission after 21 years.

All the best

God bless you

Graham

[noelParticipant]

Thanks everyone,

Being and remaining positive is very important to your well being. I am feeling so much better now than I did when I was first diagnosed and it’s all about keeping it that way. There are exciting new drugs on the way and survival times are improving all the time. Lots to look forward to.

[mhnevillParticipant]

Hi Skinner

Sorry your Dad has been diagnosed with Myeloma. It would probably better if you start a new thread on “newcomers” so you get more responses.

Take a deep breathe. There is life after diagnosis. I am four years post diagnosis and counting.

Very best wishes to you and your Dad.

Mavis

[skinnerParticipant]

Thanks Mavis, but my Dad’s diagnosis was changed later to End Stage Renal Disease, possibly due to smoking most of his life. Will be on dialysis for the foreseeable future.

Thanks.

[mhnevillParticipant]

Hi Skinner

So sorry to hear how things have progressed so quickly for your Dad. I just hope you can have some peaceful days this Christmas to leave you with some good memories.

Love and prayers.

Mavis

[skinnerParticipant]

Mavis:- No I mean the myeloma diagnosis was wrong: the hospital found an overabundance of proteins in the plasma and mistook that for a paraprotein (sign of myeloma).

• This reply was modified 9 years, 11 months ago by  skinner.
• This reply was modified 9 years, 11 months ago by  skinner.

[nickyx1Participant]

Just like to say hi, this is my first post on here. I was diagnosed in March 2014 after months of going up to doctors and a & e . Eventually had an MRI which confirmed a fractured sternum but also found a tumour behind the fracture. A biopsy confirmed mm and para proteins of 29.5. I have had 7 rounds of cyclophosphamide with lanolidomide and dex.levels have dropped and am now awaiting sct. Had line fitted yesterday which wasn’t as bad as I thought but an quite sore! Have got conditioning chemo Monday and can’t say I’m looking forward to that! Like you I am ony 44. I hope your treatment has gone well for you.

[noelParticipant]

Hi Nicola, sorry for late reply, I haven’t been on here much since xmas. It seems the way we both presented our myeloma is very similar and yet the treatment leading up to SCT was different; apart from the Dex – everyone seems to get Dex.  You may be still in hospital as I write this so I hope it has all gone well for you. Just remember that recovery is very slow so be patient with it. It took me a good six to seven months before I was anywhere near back to normal. Try to remain positive, use all the support you can get and you’ll be feeling better before you know it!

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