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DiscussionWant to talk about Multiple Myeloma: Anyone else?
Blood Cancers & Disorders | Last Active: Nov 10 6:24pm | Replies (414)Comment receiving replies
Replies to "I have been diagnosed with MM stage 1. I am considering treatment at Mayo Clinic. The..."
Welcome to Connect, @scmsable. Besides the weekly monitoring, are you also receiving active treatment?
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 />
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Steve
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.
I did go to a Dr. James Berenson in LA (Beverly Hills). He has been specializing in MM for 30 years. I am going to Mayo now and
so far it's been a great experience but I do live in AZ. It might be worth it for you to get a second opinion with one of the MM specialist
at Mayo Az. I would recommend Dr. Fonseca very highly. The specialist quite often agree to send your regimen to an Oncologist at a
clinic close to you for the treatment. They coordinate your treatment.
thank you
They have Mayo in Arizona. I see an MM specialist at Mayo, Jacksonville, FL. It is a 2 1/2 hour drive from our home in South Georgia. We even drove it for Chemo, once a week (3 wk on/1 wk off), for 4 months. I had my SCT there, too. They are all wonderful, at Mayo. They have great organization, and communicatin skills down pat! And the professionalism can't be beat, in my opinion. It was worth every mile. I go back in June for my 2 year re-check.
I am in So Cal too and will get bone biopsy to confirm or reject MM Dx. Multiple doctors ordered PETCT and dozens of Blood tests and are very suspicions of MM. If positive for MM then I wish for Mayo clinic oversight of my local Dr treatment plan and treatment itself. Is this done through staying at Mayo or is remote Telehealth practical? Who are the MM experts at Mayo? Will Original Meficare pay for Mayo and the treatments themselves? What is the on campus housing situation?
You may want to check with city of hope in CA as well, rated very highly.
My wife was treated at Md Anderson and Mayo. Both gave the best treatment, unfortunally when they discovered her cancer it was Level 3. The best place. Help in Healing Home at Mayo Village is a good place to stay
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