Newly diagnosed Myeloma stage 1

Hi it's not too bad that you don't need treatment right away. Did you do MRI or PET-CT? How are your other figures in the blood test? Do you have any risky gene mutations? If you are asked to check every 3 months, presumably yours is not an aggressive sub-type. 

I'm mid 40s and was diagnosed in Sep, stage 1. Found bone lesions and started chemo/immune therapy in Oct. Was not great experience. Rashes and constipation. Had been to A&E once due to fever. I never thought it would happen to me either. Sheer shock. Still have not accepted it. 

Hi Keepbelieving.Good to be able to chat to you . I'm Sue AKA Cackie. You must be feeling scared and confused at the moment .I know I was but you gave come to a good place .I was diagnosed with MGUS the forerunner to MM 2015 and remained on watch and wait until 2022 when I progressed to full blown MM .To be honest when I reflect once I got over the shock and baragre of tests I was able to settle down on 3 monthly bloods and a chat with Haematology quite well .I got to know and trust the team and there was always someone to call if I needed to talk things over . August 

2022 things started to go wrong and I progressed to full blown NM . It was a real shock even after all the years of waiting . Started treatment immediately and had a Stem Cell Transplant April 23.

I'm now in remission and feeling really well . You may not feel like it at the moment but you are in the best place and any changes will be picked up early and acted on . Look at sites like Myeloma UK and find out your nurse specialist . It's not the best road you want to be in but it is manageable. Please don't try and navigate this confusing diagnosis alone this is a great chat site  xx wishing you all the best Sue x 

Thanks Cakie and JulieSG for your prompt reply, it feels great to know that there's people out there supporting each other.

As I mentioned before, all of this for me is a whole new world. I am trying to get my way around to get to know the medical terms, etc..

Below in brackets, is what appears on my diagnostic, some of the figures I don't understand yet, the only procedure I had done prior to the Bone marrow biopsy was a CT scan, which fortunately it came out all clear. 

All this started with a low level of anemia found by my GP on some previous blood test.

(Asymptomatic myeloma, ISS stage I. Cytogenetics demonstrate gain 11q.

Mr XXX

Was seen in Haematology Clinic with an IgG kappa paraprotein of 23g/L. A CT scan showed

no lytic lesions and a bone marrow showed 40% plasma cells. Myeloma FISH demonstrated a

gain of 11q, beta microglobulin 1.9, LDH 214.)

Hi    like so many of  the  great replies,     you are not alone,   i remember   post Bone marrow Biopsy,   first haematology  consultant  appointment,  leaving the  hospital    feeling better than  when i went  in,      as he   answered all my  questions,  the plan was put in place and the treatment started the next   day!      4 cycles of  DvtB      and then stem cell harvest then  Stem cell transplant,  i am now 9 months post Stem cell,   leading a great life,    it is not an easy journey,         lots of jabs,   blood tests,      boots pharmacy at home,  but the care,  the   staff,   the communication even between hospital and GP    brilliant,    i now   walk my dog   cut the grass,   etc,     lots of advice,  the best one of many was,   do not fight your   body,  if it   wants sleep  from fatigue,    at 2.00pm in the afternoon do  it,      yes i had dark days and nights,     after the Chemo blast and SCT  i was in hospital for   10 days and  nights,   but  it is worth   it,  honestly, !!      best wishes,       my consultant  has a great sense of humour   which helps me,       the new treatments  on the NHS  are    very good,  and   Blood cancer .org  and Macmillan give great support       Kevin AKA   Vespa

Thanks Vespa, very reassuring.

Something else I have not mentioned is that I have been having issues with heavy incontinence for the past 15 years.

I do not know if  it is also related to the Myeloma, but My UROLOGYST has sent me an Urodynamics test in mid November, apparently I might need to have some hormones implants on my bladder to restore it.

Hi again .Very similar to you I had aneamia and low iron store levels for gor a few years .GP did a random test and this resulted in a referral to Haemotology .

I soon realised that I was looking at the "long game " after a few blood test stopped looking at numbers and decided to look at trends in the blood results .My consultant kept me right and was always honest with me .

You will find a way through this but there is always a listening ear here x Sue 

God bless, thank you!

Hi. Sounds to me like you were lucky enough to be spotted at a very early stage, which of course makes for a much better chance of positive  outcomes. I myself was diagnosed two and a half years ago with stage 1/2. Ii elected to take part in a trial and have been in full remission since then. Keep your chin up. It sounds like you are in a good place. Would you mind if l asked what the symptoms were before you got a diagnosis?

Hello Rocky, nice to meet you! 

Well, as you mentioned, I think we were very lucky to be pick up from an early stage.

I also took part on the trial when my biopsy took place. I had my first check up results in November, and everything remains the same as the initial diagnostic.

I'm waiting to hear from my second one results in February.

In regards to symptoms... to be honest I never felt any, the lway it was found, was after a general MOT I had with my GP because I had lost a bit of weight. On the blood test a bit of anemia and protein showed up... 40%.

Have you had any treatment at all... or are you also on monitor and check quarterly?