[kenbParticipant]

Although I got told I had cancer a few months ago, only confirmed as myeloma last week. Been round the houses with initial suspicion being sarcoma and then delays in appointments/results meant only getting to see haematology last week – next appointment in a minute!!

[richfsModerator]

Hi Ken,

Sorry to hear about your diagnosis, and that it’s taken a while to clarify what is affecting you. Myeloma can be very difficult to diagnose, but once that’s done the NHS will start treatment quickly. Whilst it’s the last news anyone wants to hear, at least when you know what you’ve got and what can be done about it, you can focus on getting through the treatment and back to healthy life.

Myeloma UK have recently trained some peer-volunteers to assist on this forum. I am one such person and was treated for myeloma in 2019 with VTD and a stem cell transplant.

Do always push your haematology team if you’re waiting for appointments etc., the secretaries can be contacted and the specialist nurses are generally your best point of contact for help with understanding the treatment (consultants can tend to be rather matter-of-fact about the options).

The Myeloma UK Infoline is very helpful, for patients and their families, and you’ve clearly found this forum, so do reach out to us for any advice or support.

Best wishes,
Rich 👍

[mulberryParticipant]

Sorry to read that you have had to wait a long time for your actual diagnosis kenb. Sadly that is not uncommon for myeloma patients as many symptoms are non specific, and myeloma can affect us in different ways. I found Myeloma UK & the Ask The Nurse service very helpful in understanding the disease & treatment in the early days. Although it’s terrifying news to be told that you have an incurable cancer, the reality is that it is highly treatable for most of us, and there are increasing numbers of patients living with myeloma for 10, 20 years and sometimes longer. I would have been far less traumatized after diagnosis if I had realised I was likely to be as well as I am 4 years later, when to all intents and purposes I am absolutely fine. I found that a year was taken up by treatment & frequent hospital visits, but since then, for the past 3 years I have been very well, with minimal consequences from the myeloma. Keep hope alive & best wishes for your treatment getting the myeloma under control.

[kh0305Moderator]

Hi Ken,
Hope the appointment went ok.
Just echoing what Rich and Mulberry have said, stay positive and ask as many questions of your medical team as you need to – it always helps to have a notebook handy too as there are so many new terms to get to grips with!
My dad was diagnosed in Jan 2013, and in his 7 years of remission lived a virtually normal life. He’s just going through his first relapse at the moment so we are hoping it won’t be too much longer until its all back under control and he can get back to a bit more normality, though he is still getting away on trips and getting his DIY done in the meantime. It is a very treatable disease, so now the haematology team have you on their radar, hopefully it won’t be too long until your treatments kick in. Good luck with it all and don’t hesitate to drop questions on the forum or to the infoline if you need some support xx

[thejollynorthernerParticipant]

Hi
My name is Dave. I too have just been diagnosed with Multiple Myelomas, I am 60.

I do not know how to post my own topic, can anyone assist me please.

Many thanks

[mulberryParticipant]

Hi Dave, welcome to the forum and to the myeloma community, even though you’d rather not be here. If you scroll to the bottom of the heading that you want to post in, you will see a box to write a heading for your post . You need to look further down the page than you got, I suspect.
I look forward to reading your post,
Mulberry

[Author]

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