I'm Sarah NON- secretory Myeloma with 8 rib fractures and spine compressions - 52 Mum of 3 just adult kids in Melbourne Australia. Diagnosed Nov 23. Completed 4 cycles of VRD. Stem cell transplant schedules 15th May. Thanks for letting me join the group!

So thankful to find this group! 52 year old mother of three grown children (2 in college), wife, and RN in a very busy short-stay ambulatory clinic. I was diagnosed with Kappa IGg MM 12/22 and started induction therapy of VRD in 1/23. Doing pretty well with this for the most part. Looking at SCT in Sept or October, we think, at this time. I have not needed to miss work for my Velcade treatments other than leaving a little early once a week but am curious about transplant recovery. I understand it can take a few months. My job is quite physical, and I stand all day so am concerned about being able to physically perform as needed. For those that have had the SCT, how long did it take to get back to “normal”, or close to it?

I remember when I was diagnosed the doctors were so shocked that I was only 42. I felt so alone because everyone I met with the same disease was so much older. Thank you for creating this group.

How do I find a specialist in AZ-I typed this in your search bar at top-nothing came up?

Had a fellow admin from another group send me the link to join. I was diagnosed Stage 3 in 2012 and had tandem transplants after my introduction treatment and have been blessed with 10 years of Complete Response.

Hi! So glad to join this group. I was diagnosed and went through my first course of treatment and stem cell transplant at 50. I felt fortunate that all 3 of my boys had their own places and significant others at that point because I am sure this would be a much more difficult journey for patients with young children. Did anyone else move up their retirement plans after diagnosis? Trying to teach while going through treatments was rough, but I did better after the stem cell transplant while on maintenance as I only had to leave for velcade injections every other week. I moved up my retirement plans to go at 55, but I relapsed rather painfully last summer which led to a disability retirement at 53. My union helped me figure out how to do this so that it was not a major financial hit, but I lost out on my lump sum contributions, ten years of health care, and other benefits that were part of our early retirement incentive because of my age. I also really miss teaching, but know it was the best decision as I can now fit in treatments, physical therapy, surgery and still have time to spend with my grandkids and take care of my mom without worrying about rapidly depleting sick days. Has anyone else found themselves considering retirement early due to myeloma relapse or complications? If you have retired before 55, what have been some of the challenges you have faced in doing so?

Diagnosed in 2009 at 36 and I still make the cut for this group of MM fighters! Where have you all been the past 14 years? I’m so blessed to be here and happy to share this journey with you all! Thank you for starting this group.

Hi, I am feeling good and would like to start traveling more to see friends and family. We prefer to travel by car and would like to have extended stays of a month or more. My concern is that I am currently on DVRd monthly treatments and need to coordinate monthly treatments at a different location. I’ve heard you need to set up a Dr at the other location to see, receive blood work in order to get treatments. Any suggestions? Thanks!

Let's begin with this topic: Telling your children, parents, or grandparents about the diagnosis What was your experience like sharing the myeloma diagnosis with your loved ones? Was this difficult for you? Any unusual reactions or responses? For those of you who have young children, did you use any analogies or simple vocabulary to tell them? How did it differ from how you told older children or loved ones? Please comment and share your experiences below.

Looks good. Thanks for the invite.

Great idea. Thank you

I'm really excited about this group, and looking forward to connecting with other caregivers who I can relate with. Having myeloma under age 55 is so much different.

Great idea Audrey, thanks for creating this group and sending the invite.

Thanks for the invite. With MM having an average age of 65 to 70 at diagnosis, a lot of the issues faced by those of us well below that threshold are vastly different. It will be great to share stories and experiences from our walks and support one another.

Thanks for the invite, looking forward to meeting and gaining some insight from other people in this space. Have a great day.