Want to talk about Multiple Myeloma: Anyone else?

Hi @larryfairtax,
Here is a list of the currently open clinical trials for multiple myeloma at Mayo Clinic http://www.mayoclinic.org/diseases-conditions/multiple-myeloma/care-at-mayo-clinic/clinical-trials/con-20026607

You are the 5th member who recently joined Connect looking for a group to discuss Multiple Myeloma. I moved your message here so that you can connect with the others. It only takes a few people to get the activity going. Why don't you get us started and tell us a bit more about yourself. When were you first diagnosed with MM. How are you doing today?

Looking at the posts for Multiple Myeloma I see there is that as a whole, not much activity there.
What is going on with trials at Mayo and how can I find out what I might be able to participate in?
Larry

Welcome @user_ch3a1e07f, @mamaellie and @bjsdancer. @scmsable recently also joined Connect. I moved your messages to this discussion thread, so that we can build a multiple myeloma group with past and new members.

Let's start with introductions. Why don't you tell us a bit about yourself? When were you diagnosed? Are you in treatment? Anything you wish to share.

My husband has myelofibrosis anyone else have this disease?

I am looking for the same. Maybe we are the first 2.

Do you have a multiple myeloma group?

Ah yes, brain fog and lack of energy - 2 common side effects of cancer treatment. I bet @fundytide @julied838 can relate. They too posted about brain fog and fatigue lately.

My colleague Sheryl M. Ness @smness, patient educator at the Mayo Clinic writes a great blog. Here are 2 posts about coping with brain fog http://www.mayoclinic.org/diseases-conditions/cancer/expert-blog/coping-with-chemo-brain/bgp-20128186
and fatigue http://www.mayoclinic.org/diseases-conditions/cancer/expert-blog/decrease-cancer-fatigue/bgp-20194337

I'd be interested in hearing about your strategies.

Yes, I do chemo twice a week for the rest of my life. I hope to get to the point that I can take pills and not have to go for infusions. My major problem is the brain fog and lack of energy but I am in no pain at this point.<br />
<br />
Steve

Welcome to Connect, @scmsable. Besides the weekly monitoring, are you also receiving active treatment?

I have had active myeloma for almost 2 years. I am fortunate to live in Palm Springs where the Eisenhower Medical Facility is located. They have the best care in southern California. I am in stage 3 but my numbers seem to be stabilizing. The best part of going to Eisenhower is they have their lab work done with Mayo, even the weekly draws are analyzed by Mayo even though the equipment is here the doctors are at the Mayo CLinic. Great to have both so close, all the best. Steve