Want to talk about Multiple Myeloma: Anyone else?

Posted by Frazer 1 @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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

mycuppajava | @mycuppajava | Nov 6 11:43am

In reply to @gingerw "@mycuppajava Let us know how you fare today. Take that list of questions! Remember we are..." + (show)

@gingerw
I do have my questions. Thought of another one I am going to ask...What is our goal...to live longer or to live longer and feel better. Tha ks, zginger

Ginger, Volunteer Mentor | @gingerw | Nov 6 11:24am

In reply to @mycuppajava "@gingerw Thank you so much for taking the time to message me. I have an appointment..." + (show)

@mycuppajava Let us know how you fare today. Take that list of questions! Remember we are all here for you!
Ginger

mycuppajava | @mycuppajava | Nov 5 3:18pm

In reply to @gingerw "@gayeh and @mycuppajava There is an online support group sponsored by Mayo Clinic, each month https://connect.mayoclinic.org/event/multiple-myeloma-sharing-sessions-24-f7983a9a/..." + (show)

@gingerw

Thank you so much for taking the time to message me. I have an appointment tomorrow to see where my ship will sail. Nervous about what my doctor will say but I just have to brace up and take it. Thanks again. Peggy

Ginger, Volunteer Mentor | @gingerw | Nov 5 2:15pm

In reply to @gayeh "@mycuppajava Go slow, there is a lot to learn. My partner is 71 (almost 72). He..." + (show)

@gayeh and @mycuppajava There is an online support group sponsored by Mayo Clinic, each month
https://connect.mayoclinic.org/event/multiple-myeloma-sharing-sessions-24-f7983a9a/
It is a great way to get familiar with different forms and treatments for multiple myeloma. Yep, there are several ways to approach treatments, just as there are several manifestations of MM.
Ginger

mycuppajava | @mycuppajava | Nov 4 12:14pm

In reply to @gayeh "@mycuppajava Go slow, there is a lot to learn. My partner is 71 (almost 72). He..." + (show)

gayahere
Thank you! You are so kind. I am not in a hurry to know ALL about this...I dread it. Thanks for taking the time to give your experience!
Peggy

gayeh | @gayeh | Nov 4 10:25am

In reply to @mycuppajava "I would like to know what to expect. I have just been diagnosed with Multiple Myeloma..." + (show)

@mycuppajava
Go slow, there is a lot to learn. My partner is 71 (almost 72). He is not interested in knowing too much but simply goes with what is TODAY and this helpful for him. Everyone is different. Just know that there are many many lines of treatment and depending on your stage of MM, lots of choices and chances for remission and living long.
People are living longer and longer with it! This is for sure. There are many resources available on line. My only advice is to find other people (a support group) for those living with MM. Blessings and positive thoughts to you today & always.

dickmm | @dickmm | Oct 31 1:55pm

In reply to @mpeterson323 "I also have MGus. I have had this for at least 15 years, but was just..." + (show)

@mpeterson323
I went from MGUS to SMM to Mutiple Myeloma fairly quickly and was told then (about 3 yrs ago) that I was high risk. Since then have had only immunotherapy, but have been in remission for about 18 mons. Most frequent monitoring is blood tests including CBC, CMP, kappa, lamda, Mprotein and ImG, ImA, ImM, of which ImG is most critical, but you seem to be well above what I understand is critical value of 400-500. I’ve also had a couple of biopsies and PET-CT.

mpeterson323 | @mpeterson323 | Oct 30 7:43pm

I also have MGus. I have had this for at least 15 years, but was just given that title in the last year. My IgM levels have been steadily increasing to now around 850. I have monoclonal gammopathy also. My new hemotologist / oncologist is requesting a bone marrow tap. I am 72 years old with multiple autoimmune disorders. It is thought that I have either Multiple Myeloma or Waldenstrom Syndrome. I also have swollen glands, fevers, & chronic fatigue. What symptoms, tests, & procedures have you had?

mycuppajava | @mycuppajava | Oct 29 3:06pm

In reply to @gingerw "@mycuppajava Welcome to Mayo Clinic Connect. Getting a diagnosis like multiple myeloma can certainly set your..." + (show)

@gingerw
Thank you so much for your contact. Comforting knowing someone understands!!
Peggy

Ginger, Volunteer Mentor | @gingerw | Oct 29 12:52pm

In reply to @mycuppajava "@auntieoakley Thank you so much for your input. That really makes me feel better already. I..." + (show)

@mycuppajava Welcome to Mayo Clinic Connect. Getting a diagnosis like multiple myeloma can certainly set your mind into high gear, wondering what is next. The International Myeloma Foundation offers a ton of useful information. Be aware it's like a firehouse, a lot to take in. Eat it like an elephant, in small pieces LOL myeloma.org

Having a list of questions is a good idea. And remember, there are several different manifestations of multiple myeloma. A treatment plan for one person may not be the same for the next person, so be aware of that. We have that same diagnosis, but variations of that. We will be here for you, to offer support and a shoulder to lean on!
Ginger

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