Want to talk about Multiple Myeloma: Anyone else?

@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

@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
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 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?

@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!

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/

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

I would like to know what to expect. I have just been diagnosed with Multiple Myeloma and have read a lot about pain in the back, chest, and hips. Can cause kidney failure, broken bones, tiredness, and...

This is a great place for anyone approaching this massive experience - Autologous BMT. My partner is scheduled for end of January 2025. So many steps before he gets to that point. He is in week 13 of 16 weeks of DVDT and he is doing well with this potent regime; this is only stage one of a long haul. It’s all quite overwhelming emotionally and affects one’s life (and partner or primary carer) on every level.
One day at a time is the best attitude as going too far into the future feels overwhelming, scary and simply too much to understand, remember and process. That is me today. But thanks to those and their transparency.
We are located in rural England and his dedicated haemotologist combined with the other health care professionals have been excellent - thus far. Thanks again for everyone’s posts. Greatly appreciated at this early stage of MM.

They caught mine on a yearly physical but it had progressed to smoldering myeloma. About a year later I started treatment. I had 16 weeks of chemotherapy with a single shot to the stomach each week. Also I was on 5 different medications while on chemo. So now I’m all done with chemotherapy and the drugs and am being monitored with a complete blood count and a meeting with my oncologist every three months. Chemo for me was not that bad, just drained all my energy but starting to get some back. I keep fairly active and a positive attitude helps a lot. I have a great support system and could not ask for better care at the Fargo VA, wonderful doctors and nurses. They are making great progress in myeloma treatment so hopefully sometime in the future it can be thought of as a curable cancer. Besides chemo I have had a couple bone marrow biopsies which I can say were not bad at all and I was not put under for either one. I have an aunt who has had MGUS for over ten years and doing well, she just goes in every few months for a shot. So to end this my journey with this disease has not been terrible but everyone’s is different. So I live my life as normal as possible and thank my maker for another day. I pray for everyone who has this cancer and may their journey be a successful one.

Patty,

Thank you for your feedback. I'll try to keep an open mind when we meet with the team next week.

Thanks,

Tina