Hey, I'm new here

Hi Pjeter,

I am really sorry to read about what you are going through at the moment. Unfortunately, a diagnosis like myeloma is a bit like someone taking one of those snow globes, turning it upside down and giving it a good shake in terms of what it does to one’s life plans. No-one is going to be able to answer the how long have I got question and unfortunately living with that uncertainty is something all myeloma patients have to come to terms with. Having said that, there are lots of reasons to be optimistic with some great treatments out there and many medical people beginning to view it as a chronic condition rather than something that will kill us off quickly. I think you will probably have to do some hard thinking in terms of what this means for your plans - there are no right or wrong answers and you should have confidence in that whatever you decide to do. For me, questions I would be asking myself are “how well do i feel?” “is there any indication I need to start treatment soon?” “what is my plan in case I do need treatment?” You might not need to necessarily change plan A but you may need a robust plan B. I don’t know much about smouldering myeloma as I went straight into active treatment on diagnosis and it is true when you get to that stage, it is good to have some support around you as the treatment can make you feel quite poorly. Hopefully someone with a smouldering myeloma diagnosis will be along soon to give you some tips, I think it can be a little akin to watch and wait, and in that scenario whilst you remain well in yourself you can to a large extent carry on as normal.

I am really sorry that I cannot give you any more concrete answers, unfortunately those are going to have to come from within. This diagnosis will probably knock you sideways for a bit and may take some time to get your head around, but please don’t ruminate too much on the future and what this means. There is still lots of hope and positivity to be found even in such a devastating curve ball as this. I am really hoping you find a path that works for you and that you are happy with and please continue to reach out for support, there is a good chance you will find someone here who has some understanding of the challenges you are facing.

Greg

Thank you so much for your reply Greg.

I am feeling a bit better today. I shared my diagnosis with a friend and seeing how supportive she is really gave me strength. To be honest, I am a very pessimistic person by nature and also about this but if I think rationally about it I really have to stay positive. 

I think that your suggestion of having a plan B might be a good framing to think about my plans.

I really hope I can come to terms with this uncertainty. I feel like it's a real strange diagnosis. I would love to hear from someone who share this diagnosis how are they confronting it.

Hi Pjeter,

I’m new to the group and just read your post. I also have smouldering myeloma. I just thought I’d reach out as you said you’d like to hear from someone who shares the diagnosis. 

Mall the best

Helen

Hi Everyone I am new to the group. I have multiple Myeloma and I am waiting on a Stem Cell Transpant. This was meant to happen at the end of May early June but due to Covid they were behind with admissions. My disease has now become active again and I am back on oral Chemo until the  transplant is safe to do. I would appreciate advice or hopefully reassurance from anyone