A big welcome to the forum.
Iām sure you have lots to share with others. I look forward to hearing more from you.
How are things for you at the moment?
Nichola 
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Great to read that youāre living pretty much a normal life @turan.simsek despite your diagnosis.
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Hello @turan.simsek
Lovely to hear how well you are doing - and the positive mind set you have
Do let us know how you get on
Take good care
Mike
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Hi. Iām new here having been brutally diagnosed with myeloma yesterday when I thought I might have kidney stones, so wasnāt expecting to hear the word cancer or the diagnosis at all.
Iām 62 and recently retired (maybe that was a poor choice as I had private medical cover?) and trying to come to terms with everything, read up on it from reliable sources but avoid trusting Dr Google and those websites
I was initially numb but have already become more positive about the outlet but am scared stiff at the thought of months/years of chemo, stem cell transplants etc.
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Hi @AndyY and a warm welcome to the forum.
Iām sorry to read about your diagnosis.
Itās bound to be a shock especially if unexpected.
I was in a similar position October 2023. Went to the GP to ask about my belly button sitting a bit funny.
GP said whatās going on with your side
Did blood test and results later that day suggested Myelofibrosis which was confirmed a few days later.
It comes as a shock for sure.
What I found was that I just had to take things a day at a time.
After a lot of chemotherapy I got the opportunity to have a Bone Marrow Transplant last April.
You will find lots of support on the forum and the Blood Cancer Nurses and Blood Cancer Support Team are amazing
Take care
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Hello @AndyY
Thank you for taking time to send in your post to the forum
Iām so sorry to learn of your diagnosis. It comes as a shock i know (i got my diagnosis of Chronic lymphocytic leukaemia ('CLL') just under a year ago). Please be assured you are not alone - this forum and the people here are make wonderful community and its a great place to find support from people experiencing not dissimilar circumstances.
Needless to say - do feel free to stay in touch and let us know how you get on
If you prefer - donāt forget you can call us for free on [0808 2080 888](tel:0808 2080 888) (Option 1) to speak to one of our Support Service Nurses in confidence.
Our phone lines are open:
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Monday, Wednesday, Thursday, Friday: 10am ā 4pm
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Tuesday: 10am ā 7pm
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Saturday: 10am ā 1pm
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Sunday: Closed
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Bank holidays: Closed
Alternatively, call us anytime and leave a message and weāll get back to you within one working day.
Take good care
Kind regards
Mike
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Brutal is the word! @AndyY
After laying a patio I had some back and hip pain - after two months of physio and no improvement- I took a private mri - they did the wrong hip, but could see a big lesion on the cross section. I was asked for consent to refer me to my GP, I asked why and was matter of fact told ābecause I think you have cancerā, no softening the blow - just a verbal punch to the stomach. 20 mins after I get a call from my GP (now Iām worried because I thought Iād have to sell my first born for that to happen) - who tells me āitās fascinating because we donāt know where itās coming fromā. Ghastly. In the space of 30 minutes Iād gone from having some pain to believing I had a stage 4 diagnosis (knowing nothing about blood cancer, just from the GPās reaction and assuming it was secondary that was already in my bones).
Anyway from that moment on it was a whirlwind- multiple MRIs, CT, bloods, bone marrow biopsies all in the space of a couple of weeks - the NHS is incredible for Myeloma, so donāt lament your lack of private healthcare- Iāve yet to use mine for this, youāre in good hands. I had radiotherapy and the pain went by 5th session- incredible as Iād been so immobile for close to 11 weeks by then. After 2 cycles of chemo my light chains were back in the normal range and now Iām on a break feeling well and awaiting ASCT in 4 weeks and hoping for a very long remission (Iāve just turned 51).
So I know itās a lot to process, but keep the faith, the treatments are very effective. If you need support, weāre all here for you xx
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Hello there @AndyY, welcome to the forum. Iām really so sorry to read of that myeloma diagnosis coming out of nowhere like that, brutal indeed.
Good stuff trying to avoid Dr Google as itāll be just a lot of generalised results that way. Perhaps you might like to read the great Blood Cancer UK research about myeloma instead: Myeloma | Blood Cancer UK
I would say keep note of all questions that pop up at this early stage after diagnosis. May I ask if you have loved ones you can share this news with? It can really help to have someone we trust go along to appointments to help keep note and offer support.
Do please consider calling the lovely specialist nurses at Blood Cancer UK on 0808 2080 888 as they can offer medical advice and other specialised support. Iād also say have a look around the forum using the search box at the top and Related Topics below as youāll find other forum members who have shared their experiences of living with myeloma and its treatments.
Keep us posted about how you get on please @AndyY.
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Oh my, Iām really sorry to read how brutal your diagnosis was as well @Spangleystar! Ghastly too, to hear from a doctor they donāt know whatās going onānot reassuring!!!
Itās so heartening to know how youāre managing this as you are now, no small task, right?! Itās really lovely that youāre supporting others, like @AndyY, but please be mindful of your needs too and enjoy your ābreakā by not overdoing it. I say this with care as I know we can tend to extend ourselves when we have even a moment of normalcy or bonus energy!
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Hi @AndyY and welcome to the forum.
Iām a couple of days late to this post and wanted to check in to see how you are doing.
That must have been such a huge shock and I can imagine itās has been - still is - tough to process it all.
I know my mind went to the worst case scenario when I was diagnosed with lymphoma. I think everybody on here will remember that feeling.
Other members have given great advice and the helpline number. They really are great if you need to talk things through.
Please take good care of yourself. We are all here if you need us.
Nichola
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Thanks everyone. I (think!) Iām over the initial shock and am amazed at the speed bone marrow biopsies, echosounds, nephrology consultations, full body MRI scans, chemo etc are taking place. Itās taken in a life of its own now
I am definitely positive about the outlook. It scared stiff about the thought of the stem cell transplant.
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Hi @AndyY
Thanks for the update.
Yes we only hear all the bad things about the NHS and the good thing is when it comes to cancers they do an amazing job.
At the outset there are a barage of tests which all support clinical decisions.
Good to hear that in a positive frame of mind.
I know thatās helped me a lot.
Decided early on after diagnosed to focus on what I could influence and let go of those things I couldnāt control
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Okey Dokeyā¦well, I got diagnosed in April 2004 so Iām a smidge late to the party. I only found out it was a cancer about 5 to 6 years ago. I was toldā¦oh yeah, you have essential thrombocythaemia and to be fair to the Docās in 2004, I didnāt actually look into it or the meds, I just kinda went haywire and started doing a lot of travelling and sports I had never considered.
Anyway, I have been on Hydroxycarbamide/urea for 22 years and in the last 4 weeks my consultant has decided to switch me to Interferon injections. I am still waiting for the chat about why but thatās upcoming next month, so weāll see.
Overall health, Hmmm I may be getting put down or donated to medical science , it depends on who wins, the doctors or the vets 
trulyā¦ fatty Liver, Hiatus Hernia ( I had to look that up !! ) Gall Bladder is gone ( stones ) severe migraines monthly now, constant pain in my abdomen and losing muscle control i.e. arms and legs shake of their own free will ( sure as heck not mine )
oh and occasional muscle spams ( awesome for cocktails and milk shakes not so much when shaving or trying to pass your mum a glass of wine :-)) )
Other than thatā¦pretty good really
toodles
Tim x
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Hi everyone. Im still waiting to see what is going on with my health. I have an appointment at haematology on the 21st april 2026 so 2 weeks today. Itās getting closer. Since I last posted I have had hormonal aspects looked into incase my symptoms are anything to do with anything like that, all tests have come back satisfactory. I hope the next 2 weeks come along quick so that after a long 18 months I can finally know what it wrong, or at least rule cancer out.
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Hi @Timriach, what an introduction - 22 years of living with Essential Thrombocythemia and a gift for understatement thatāll fit right in here 
The switch from Hydroxycarbamide to Interferon is something quite a few people in our Myeloproliferative neoplasms ('MPN') community have navigated, so once youāve had that conversation with your consultant and want to talk it through or hear othersā experiences, youāre in the right place for it.
Welcome properly to the Forum!
Take care,
Ceri - Blood Cancer UK Support Services
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Hi @Robbo90 , itās good to hear the hormonal tests have come back satisfactory, even if it still leaves questions open.
Thinking of you for the 21st. Do come back and let us know how you get on?
Take care,
Ceri - Blood Cancer UK Support Services
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Thank you, everyone has been so kind and supportive here.
I will be back to update after my appointment on the 21st 
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Hi. I am Caroline, diagnosed with smouldering myeloma 1 year ago and waiting for an MRI scan to see where I am at. I am grateful to Lynne for phoning me today to discuss options for clinical trials. The watch and wait game is a mental roller coaster. I am grateful for the support that this website provides.
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Hello there @Freda, welcome to the forum. Really glad you found us, itās never too late to find useful information and support here. Youāre not alone in finding watch and wait a mental roller coaster, such a great description.
Iāll just share the great Blood Cancer UK information about smouldering myeloma (āSMā) here in case youād like a read: Smouldering myeloma | Blood Cancer UK
If youād like to find others with a similar diagnosis just use the search box at the top or Related Topics below. I know there are some lovely forum members who have shared their experiences.
Here is a link to Myeloma UK which may be of interest as other forum members have shared it previously: https://www.myeloma.org.uk
Recently there was this smouldering myeloma peer support trial shared in the forum which may be of interest: š„ MODIFY Trial (For Smouldering Myeloma) Peer Support ā Connect with Others
And Iāll just pop the Blood Cancer UK number here in case youād like to call the specialist nurses, itās on 0808 2080 888.
Iāll keep my fingers crossed that you receive great MRI results. Do have a look around the forum @Freda as Iām sure youāll find further relevant information.
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