[Sindy]

Diagnosed with MGUS; feel alone

by Sindy on Sun Dec 29, 2013 2:38 pm

Hia. Just joined site. I was diagnosed with MGUS January 2013. The whole diagnoses was a 'world shattering experience' as days before I watched my mom die of her cancer (I won't give those details as may worry some), so since then although I have the IgA and IgM I learnt that mine is IgG but consultant cannot decide between 'kappa' or 'lamada' as I have both. Well I don't know where to get emotional support as all sites seem to be only on cancer and as I am yet to be diagnosed, I feel cheated and other than doctors (who don't have time to answer question certainly won't have time to give support) I feel alone. So anyone out there who can help?

[Multibilly]

Re: Diagnosed with MGUS; feel alone

by Multibilly on Mon Dec 30, 2013 3:05 pm

Hey There Sindy,

Sorry to hear about your Mom and your own cancer diagnosis.

I'm not all that much of a touchy-feely person, so I'm not sure how much I can offer you in the way of emotional support. Depending on where you live, you may have access to some local multiple myeloma support groups that may be of help to you.

While it's easy to leap to "dark, worst-case conclusions" when one is first diagnosed with multiple myeloma, I would take heart that you are at the MGUS level. You could very well stay at this level for the rest of your life without incident. Many on this forum are diagnosed when they are several stages beyond the benign MGUS level and have suffered debilitating skeletal issues and/or organ damage. But even many of these folks do quite well after having some of the truly amazing chemo treatments that are now available to multiple myeloma patients. In your case, you may just have to deal with getting some lab work done every year and that would be the end of it.

Additionally, should you progress to symptomatic multiple myeloma in a few years, you will also have access to the all the promising multiple myeloma drugs that are currently in the pipeline.

In my case, I was diagnosed a little over a year ago at the next level up from MGUS, the smoldering myeloma level. While I was definitely bummed and preoccupied with my mortality for the first couple of months after my diagnosis, I finally got over it by educating myself and proactively doing what I could to combat the disease through exercise and diet. That allowed me to "intellectualize" the disease and really helped me get my life back on track.

Hope this helps.

[Eric Hofacket]

Re: Diagnosed with MGUS; feel alone

by Eric Hofacket on Mon Dec 30, 2013 4:24 pm

Sindy,
I am very sorry to hear about your diagnosis. I was diagnosed at Stage III and it is quite a life changing event. I second Multibilly’s assessment of your situation. MGUS is certainly not something to ignore and it is unsettling to learn that your chances of developing a life threating cancer have suddenly increased. But as Multibilly said a significant amount of people with MGUS will never have it develop further to smoldering myeloma or fully active myeloma. If is very likely you will live a long life then die of something else. And if your MGUS does progress to active myeloma the treatments available today can often provide many years of quality life. With the progress being made today in treating myeloma it is not a false hope that a cure may be developed in the midterm or it becomes treatable for life like AIDS has become for many. Nothing is going to happen with you in immediate future and I would say time is on your side. There are myeloma specific support groups and many more support groups for lymphoma and leukemia that often include myeloma as well. If I had MGUS I do not know I would want to go to these support groups. Many of the people in these groups are in a bad situation, which is not your situation, and it may just cause more anxiety that is necessary. I would research and educate myself about myeloma, smoldering myeloma, MGUS, the drugs and treatments available, the clinical trials for drugs in development. Learn what lab testing is done to track and monitor these diseases. I think if you can do this you will learn more about where you stand with MGUS and realize you are not in dire jeopardy. It will also help you in communicating with your doctors and if your MGUS does progress further it will help you make informed decisions about what to do. The Beacon is a good place for information. The Multiple Myeloma Research Foundation web site is another good source of information.

[Steve]

Re: Diagnosed with MGUS; feel alone

by Steve on Mon Dec 30, 2013 7:37 pm

Hey Sindy,

Sorry to hear about your mom. No doubt particularly difficult for you given your MGUS dx, HOWEVER, the good news is that the chances of progressing from MGUS to multiple myeloma are about 1% per year. You may, as was noted above in this thread, live the rest of your life without progressing given those odds. Now that said, it would be good for you to begin educating yourself on this site and others so you can begin to feel that you are a bit more in control with any future choices you MIGHT have to make in regard to seeking optimal treatment should the MGUS progress to multiple myeloma.
Are you seeing a hem/onc that sees multiple myeloma patients? Has he/she recommended any imaging, say at least, a full skeletal?

This is no doubt an emotional time in your life with your mother's passing so my advice is to try to allow yourself time to grieve your loss and put the MGUS dx on the back burner for the next several months. First things first....MGUS doesn't warrant your emotional energies now....get through some of your initial grieving first.

Best,

Steve