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Frazer 1
@frazer1

Posts: 13
Joined: Apr 06, 2012

Want to talk about Multiple Myeloma: Anyone else?

Posted by @frazer1, Apr 11, 2012

Asking anyone who is going thru this experience to share any pro’s or con’s of this disease. As of now I’m in MGUS, will find our next week if it has progress to Smoldering Myeloma.

Liked by Lisa54

REPLY

@larryfairtax

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

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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?

@colleenyoung

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.

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Hi Colleen. I am located in Piedmont NC and have treatment at Wake Forest Baptist Cancer Center. I was diagnosed with MM in August 2013, almost 3 years ago. My NP was actually the one who did a lot of research and blood tests and decided I need to see a hematologist. I thank God for her every day. My bone scan showed several tumors in different areas of my body: skull, hips, femur and ribs. I was started on Revlimid and dex, tried to do stem cell transplant at Duke. That didn’t go well. I ended up in the hospital with multiple infections and kidney failure. All my docs decided I was not a good candidate for stem cell transplant. I have been hospitalized several time for UTIs, pneumonia and bronchitis due to poor immune system. A year ago, I was started on Velcade injections every 2 weeks along with dex. My last hospitalization was May 2015. YEAH! Because my blood work has been looking so good, my doc is considering reducing the Velcade to every 4 weeks for a maintenance dose, with close watch on the numbers. I do have a Zometa IV every 4 weeks for bone health. There is of course the brain fog (which is so embarrassing and aggravating), along with headaches, back pain, and low energy. But, all in all, for having the big “C”, I do pretty well. I am blessed with wonderful family and friends. It could definitely be worse.

I was a sick child with lethargic issues and bloody noses. I would drift off and not remember things. At age 18 I was diagnosed. I lived a very normal life till pregnant in 1988. Anemia was big and a hard task to shake. In 2012 the Roger Maris Cancer clinic said I was jumping on the scale of were I was at. My numbers in blood tests were off the chart. I changed my diet. Got better. 2014 I got ill again and went through lots of tests including bone marrow. It has affected my red blood cells to the point I need iron infusions or supplements to keep the anemia under control. Fatigued and in bed a lot. My immune system is wore out and I get viruses easy. Other than that I live a great life.

Liked by Lisa54

I go to Roger Maris and live in Moorhead. Are you still going to Roger Maris, may I ask. Would like to chat with you.

@colleenyoung

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.

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how do I get on the MGUS support group board???

@colleenyoung

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.

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Hi @lisa54, the MGUS related discussions can be found in the Cancer group here: https://connect.mayoclinic.org/group/cancer/?tab=discussions

@islander123

I have been diagnosed with MM stage 1. I am considering treatment at Mayo Clinic.
The challenge is that I live in CA. If there are any out of town folks who have been treated at Mayo I would very much like to hear the pros and cons that you experienced and how it worked.

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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.

@islander123

I have been diagnosed with MM stage 1. I am considering treatment at Mayo Clinic.
The challenge is that I live in CA. If there are any out of town folks who have been treated at Mayo I would very much like to hear the pros and cons that you experienced and how it worked.

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thank you

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