[Clo26]

Just diagnosed with smoldering multiple myeloma

by Clo26 on Thu Feb 26, 2015 8:05 am

Hi all,

My name is Chloe and I am 28. I have just been diagnosed with smoldering myeloma. It is a pretty scary thing and, although I am asymptomatic and my protein levels have not changed in 2 years, it is very stressful.

Would love to talk more with people experiencing the same thing.

Kind regards

[Multibilly]

Re: Just diagnosed with smoldering multiple myeloma

by Multibilly on Thu Feb 26, 2015 9:16 am

Chloe,

First, congrats on being stable.

I have been smoldering for a little over two years now.

I find that spending a lot of time educating myself about multiple myeloma and treatments really helps me understand just how promising the pipeline of treatments are for multiple myeloma patients. That gives me a lot of hope, should I ever progress. Having a better knowledge of multiple myeloma also makes for much better follow-up visits with my doc. Knowledge is power, and it helps me get rid of a lot of anxiety about this disease.

I also personally found it very important to get hooked up with the right specialist who can provide the right level of optimism regarding the future. It's also important to identify a specialist who you really trust and know that he/she will make all the right tweaks to your treatment regimen, should you ever progress.

In my case, it was also helpful to come to terms early on regarding the kind of treatment I would likely pursue if I were to become symptomatic. That helps remove a lot of the big unknowns (i.e. will you consider a transplant or not? If you do consider a transplant, would you consider an allo or auto, etc?).

For me, taking long hikes every day also really helps me clear my mind. I usually hike 6 or more miles a day in the mountains and I also try to hit the gym most days, all while plugged into my favorite music. I also know that I am strengthening my body if I ever have to deal with multiple myeloma drug treatment.

Eating right and taking supplements also makes me feel like I am being proactive in staving off the progression of the disease. Now, whether these steps will really help arrest the pro­gression of the disease can be debated, but it makes me feel good and empowered even if there isn't any hard science behind taking these steps.

Helping others who are dealing with this disease can also be liberating and rewarding ... and it helps further one's own knowledge of multiple myeloma as well.

And, remember, it's not a given that you will progress, especially if you are stable. There were some good, earlier threads on the risk of progression for smolderers. Your chances of be­com­ing symptomatic drop over time the longer you smolder.