Smouldering Myeloma

HI THC   this is Vespa,   AKA  Kevin,   i have MM  in remission right now, but still on   treatment,   Maintenance,    it is a shock,     and  i am not a health care professional,      but  the very positive thing is     it  is picked up early,  and with MM   diagnosis,  this is not often the case,      you are NOT  a  fraud,  the  prospect  can be daunting,  and  i am sure you have researched   MM.?     all i can say is the treatment   DVTB  i had in the last   12 months  and subsequent   SCT   harvest and Transplant   has been   difficult at times, but worth   all the effort,  from constant  blood tests,    and   appointments,        lucky or not,  my  diagnosis was on my  66th birthday and my retirement  day,  not what i planned to do with my  spare time!   but   the alternative   is not an option,    please share your  thoughts with people close to you,  MM  and other blood  cancers  are not as  well known as other  targeted cancers,  so you may have to explain  what is  happening  to your   blood,  bones and body,  and trust in the NHS          Kevin

So sorry to here this cannot really give any answers on what the specialists advise 

I was diagnosed in feb my bone marrow showed 92 %  i was told this was one of the biggest they had seen I also had a sore back  still have this was due to fractures in my back started a trial the only thing  is to go with what the specialist say  and the help uou will be given. 

1. Thank you for your response. 92% is very high. I feel more of a fraud now. I hope you do well on your treatment. I am being closely monitored so will leave the decisions to the experts. Just feel a little out of control. 

You do feel.out of control  my diagnosis  was multiple myloma hence I needed treatment I am now in hosp waiting to get stem cell transplant you will get good help and they will keep you updated wishing you all the best 

Hi

Sorry to hear this BUT I can completely empathise 

I was diagnosed with Smouldering Myeloma in December 2022   It was such a shock as it was detected completely by accident from a random blood test. I had never even heard of Myeloma! 

So here I am 18 months later still Smouldering, I had bloods and a follow on consultation up till last month when they then moved it 3 months. 

You are so right about telling people (especially my employer) that I have cancer but I do not need treatment, yet ! I feel like they thinking “what ! “

So, my thoughts are with you and will hold you in my prayers   

Hi, I was diagnosed with myeloma last August, no symptoms, picked up routinely at GPs. I am being seen between two hospitals one hospital have said I’m smouldering the other stage one. My BMB showed 35% myeloma cells, my light chains go between 120-400, these are checked monthly. The MRI was clear of any lesions last October. Initially I was told they would jump in with treatment but I haven’t started anything yet. Like you, I was also perplexed and have researched this and still not really clarified how my treatment will progress going forward. I feel I am definitely stage one, not smouldering as the information out there seems to be if you have more than 10% myeloma cells on BMB and/or more than 100 light chains but no lesions you are stage one. I feel I am constantly waiting for the axe to fall. I’m not sure if this helps you or if someone better than me could explain how they stage this disease and why, sometimes, they wait and see. Good luck to everyone who is battling the same illness.

Thank you for responding. 

Feeling like the axe could fall any minute is exactly how I feel. Constantly on edge. 

I care for my mother who is 89 and suffers from dementia. Worried about how long I will be able to continue to do this. Can anyone give me an insight about how I will feel when treatment does start.

I now feel as though I am talking to people who understand. 

Hi THc , sorry to hear your story and I can really understand how you are feeling because your story is similar to mine but 6 years apart  .I was diagnosed with MGUS / Smoldering Myeloma 6 years ago .it was a total shock , turns the world spinning and spiralling out of control  . Hang on in there though you are , I expect in the watch and wait routine. I had 3 monthly blood tests and a chat for all those years until I developed full blown Myeloma Aug 22 .Had all the treatment and a Stem cell transplant April 23 . I am now in remission .It's a long journey and it's not easy asking for support but just do it ( if you can ) .Once I asked  for  support life became easier . 

Have you been given the name and contact details of a specialist nurse yet. If you have think about making contact and talk to Him / her about how you are feeling .You are not a fraud x MacMillan and Maggies centres also give good advice and are great listeners  

Wishing you all the very best and keep in touch with how you are feeling  and getting on .

Best wishes Sue 

Thank you for responding. 

I was found to have MGUS 13 years ago. I thought if it had not progressed to Myeloma after 10 years it was unlikely to. 

Obviously wrong info.

I am being checked every 2 months at present. 

Just feeling confused at the moment and very worried. 

You are not a fraud.

i was diagnosed with SM before Christmas and it took me months to understand the level of Myeloma I had

i now have numerous blood test every 3 months to assess if the disease has progressed. With no obvious symptoms I am totally reliant on my consultant to give me guidance I t is impossible to assess your own progress  it is hard  to be relaxed before  every 3 monthly appointment but we just have to meet the challenge