newly diagnosed with smouldering MM

Hi it's Cakie here Or Sue ! Nice to connect to you and say Hi .

I was in your situation and had 5 years on the MGUs / smoldering road before turning  a corner into MM in Aug 2o22.Responded well to standard treatnent and a Stem Cell Transplant April 23 .I remain in remission and on no maintenance. I can really relate to you'r feeling of uncertainty but acceptance for me was something that normal life circled around . Sorry if that doesn't make sense but because I felt well I just got on with life and managed to box it away  I took comfort in getting to know the team looking after me and attending every apt offered .I was on 3 monthly blood checks and a chat or visit with a Consultant for 5 years before I needed treatment. Because I was on watch and wait for so long when things did start to turn I started treatment very quickly. I'm so grateful for that . I spoke with my specialist nurse when I had concerns and still do now . Having Smoldering M is a hard concept to understand and even more so for family and friends 

Myeloma UK are a good source of reliable information and have a good website .Maggies Centres are also good I'm told but I have no experience  of them. You are in a good place here .Always someone who will understand and offer support .Please keep in touch x 

Sue 

Hi Carolyn, welcome to the forum.

I am being cheeky in replying: I don't have smouldering MM. What I have instead is active MM, diagnosed at stage 3, which is the last stage (MM does not have a stage 4).

I am replying for a few reasons.

- The charity Myeloma UK has its own forum and it has a section specifically for those with MGUS and smouldering MM. See https://forum.myeloma.org.uk/forums/forum/smouldering-myeloma-mgus/

- To give you some kind of reassurance to you at what is probably a traumatic time. I was diagnosed in 2022 - and it was traumatic for me - but have been in remission so far for 2 years. Working, going to the gym and enjoying life, off on holiday in a few weeks! Even if or when you develop active myeloma, the treatments are far better than they uaed to be and people are living long lives with myeloma.

- You can do something about preventing or delaying the onset of MM. Two routes:

  - There are clinical trials on people with smouldering MM to give them chemotherapy as prevention. I can research further if you want. Your post suggests that you are 'high risk' (in slightly plainer English, your chromosomes may be 'messed up'). Is that right? I have heard of a trial specifically for high risk smouldering MM.

- There has also been research on lifestyle: specifically, diet. Dr Urvi Shah has been working in this area. See: https://m.youtube.com/watch?v=ieT73JXu_kc

I hope that this is some kind of help.

Hi.  Caroline.      Kevin here.    A. K. A.  Vespa.  You have had two great responses from Cakie and Chicken2       I like them have. M. M.  Post stem cell.  I can’t offer much to your present situation but I can add with experience that having the treatments.   The stem cell harvest and transplant if needed are worth it.      I am loading a good life.    Active.    Bike riding.    Walking the dog.   Driving ( I drive myself to mist if my outpatient appointments).       This does not take away your worries and concerns.    But we come out the other side knowing it could be worse.   The treatments now for. M. M. are incredibly good!    And the Macmillan web site and patient and carer information is brilliant.      You are not alone.    We care !!    Kevin ️

Dear Cakie/Sue

Thank you very much for your reassurance.  I feel so fearful of progressing to active MM that I can't see beyond to people like you who have moved there and are living well in remission post-treatment. 

It's the uncertainty of when I will progress that i am finding hard.

You're right to remind me how great the specialist nurses are. I do have a Maggie's centre nearby and they have been great. 

With thanks Carolyn

Hi Kevin/Vespa, thank you also for your reassurance and kind words. And you're right. The haematology team all say how much the field has changed in a short time.  

I do feel alone, so my heartfelt thanks for reminding me that I am not.

Carolyn

Hi Chicken2, you're not being cheeky at all. Thank you for taking the time to write such a full response.  

Yes, my chromosomes are messed as you suggest. 

My team tells me there are clinical trials which I should qualify for, hopefully starting early next year. 

I hadn't heard a out the diet option, worth looking into

Thank you! Carolyn 

Hi Carolyn,

Thanks for replying.

I would just add that being high risk is obviously a negative, but I am high risk too. I therefore know the situation on this, as I am enough of a geek to read medical research papers.

The latest chemo is pretty good for high risk cases like ours. There are also many different treatments, and new ones are appearing and being approved by regulators all the time.

All the best with joining the clinical trial.

Thanks Chicken2

I am also a bit of a geek too, it seems to help me to feel calmer

Carolyn

Hi Carolyn,

You are in the right place. I really agree with what the others have said.My mum was diagnosed with smouldering last year, which quickly progressed to MM.  She started chemo in January and is already in partial remission, despite not really having genetics on her side. The uncertainty at the start of the journey is incredibly hard, but there is a good chance of a positive future. 

We are all currently enjoying a family holiday together. Stay strong, stay hopeful.

Hello Baby tree, thank you for adding to the messages of hope I am receiving. My smouldering myeloma is also very likely to progress soon. Having some positive stories about other people who have had effective treatment is really helpful. 

I am grateful for your response. 

Enjoy your holiday together  

Carolyn