← Return to Multiple Myeloma: Come introduce yourself and let's talk

Comment receiving replies

I am new to this group so please forgive my mistakes. I see a recurring theme of getting diagnosed late and then not getting all the information you need. Our story is similar, my husband kept going to the doctor with a back ache and they kept telling him it must be a pulled muscle. Then when a sneeze brought the strongest man I know to his knees, I sent him to a doctor I knew and said “please don’t send him home without answers”. By the end of that day we knew he had holes in every bone in the chest ct scan. They scheduled him for bone biopsy. My best friend had passed in about a year with multiple myeloma so when they said he had it. ( I had already been reading) I asked for a referral to The Mayo Clinic in Rochester. We are now 2 ASCT, and multiple treatments down the road. It has been 9 years and he is doing pretty darn good. The doctor that Mayo sent us to in Oregon, was at Mayo which was our gain, always reminds us, that this is a marathon, not a sprint. In my opinion, if you or a loved one has mm, then you should seek the best help you can afford. We drove to Mayo and stayed in simple lodging, but the co pays were not higher, they were less, and our doctor here works with Mayo. If your doctor doesn’t play well with others, I would seek out a second opinion. Next, I would get informed, there are many sites on line with information. I love the international Myeloma Foundation because I can ask for help with understanding things if I need it. Next, get organized, you need to track all your own blood work and treatments because if you get sick on vacation and end up in a strange hospital you will likely need all of that information. It isn’t always easy, but it is always worth it.

Jump to this post

Replies to "I am new to this group so please forgive my mistakes. I see a recurring theme..."

@auntieoakley Welcome to Mayo Clinic Connect! Your insight and experience is very well written, and will no doubt be a help for others. I am being monitored, with a diagnosis of MGUS about 2 years ago. My next appointment is in July. Thank goodness you had a Dr who was on the ball, and knew where to send you.

Hello @auntieoakley, I'd like to add my welcome to @gingerw's. I also second her comment that your first post was well-written and contained helpful insight for other Connect members talking about multiple myeloma. Newer members to the multiple myeloma discussion, @patbrun, @robinraig, and @larsmayo may find your experience helpful in addition to the rest of the members in this discussion.

@auntieoakley, it sounds like you did a lot of advocating for your husband to get the best care possible and made sure to seek professionals that had open minds when it came to collaboration with other medical providers. You also mentioned is doing well 9 years later. If you are comfortable, what are some of the challenges you still face?