Want to talk about Multiple Myeloma: Anyone else?

Welcome to Connect, @mycuppajava (love your @name! ☺️)
With a new diagnosis of Multiple Myeloma (MM) , I’m sure you have a list of questions and concerns about this blood condition. We have several members in Connect who have also have MM and shared their experiences in quite a few discussions over the years.

One discussion that comes to mind would be the link posted below. It’s an older discussion but still current. (You can reverse the order of the posts to newest to oldest). You’ll meet members such as @gingerw and @auntieoakley along with others who have (or family members) MM.
Want to talk about Multiple Myeloma; Anyone else?
https://connect.mayoclinic.org/discussion/multiple-myeloma-299aae/
A quick search brought up this list of relevant discussions for you: https://connect.mayoclinic.org/search/?search=Multiple+myeloma+

Were you having some of the symptoms you mentioned that lead you to being diagnosised?

@mycuppajava
If you are new to multiple myeloma, suggest you visit the Multiple Myeloma research foundation website here:
https://themmrf.org/multiple-myeloma/
This is a wonderful non-profit source of info. They have bookletson each of the major
drug therapies that are available free of charge. MM is a very complex disease but as it
only comprises 2% of all cancers, your average generalist oncologist might not be too familiar with it and sooner or later you'll want a specialist. There are no MM specialists in our area, but we connect with a specialist via zoom calls from time to time. Best wishes!

@mycuppajava my husband has had myeloma for almost 16 years. His pain has always been well controlled, and he has only had one kidney injury, less than a month ago, which for all appearances seems to be recovering. He has had quite a few treatments over the years and is starting two new ones now.
I have found the International myeloma foundation to be really helpful. They have a newly diagnosed section, and a nurse you can call and ask questions. They also do regular seminars and call ins.
I agree wholeheartedly that you should seek out a hematologist that has plenty of experience with myeloma. We went to Mayo and asked for a recommendation. We travel an hour and a half to our doctor, but he is worth every mile.
My husband has had a pretty good quality of life all these years, just a limited weight capability.
Can you tell me more about your diagnosis?

@auntieoakley
I have just been diagnosed and go Back next week to see how bad it is. 20-30% are affected. Don't know what it means yet. Guess she will have to do another test.
I have read that there is a lot of pain in hips, back, and chest.
I am thinking she will want me to do the chemo pills and I don't know what to expect.

Thank you so much for reaching out!🥰

@mycuppajava not everyone has pain.❣️the pain usually happens if you have compression fractures or extensive bony disease meaning you have large lytic lesions in your bones. Thankfully, it sounds like you were caught much earlier than many at 20-30%. My husband had 75% and multiple spinal fractures.
I know waiting is really difficult and you are anxious, I am a cancer survivor as well💕, but try to breathe, and not make yourself crazy. You may never have the back and hip pain.
If you can do some reading on the sites mentioned here and get as informed as you can, this definitely helps me with anxiety and waiting.
Do you have your list of questions started for your appointment?

@auntieoakley
Thank you so much for your input. That really makes me feel better already. I do have a long list of questions. When I hear chemo, I shudder thinking about the side effects. I have not heard her spill on what she suggests, etc. so I will try not to borrow trouble until she says it. Thanks again soo much and Hugs. Peggy