Multiple Myeloma: Come introduce yourself and let's talk

@ancopau1998 Let me welcome you to Mayo Clinic Connect! I see you have posted in a couple of different conversations here today, good for you for jumping right in!

Like you, I am a multiple myeloma patient, taking Revlimid 21 days on, 7 days off. Along with a weekly dose of Dexamethasone and SMZ TMP for antibiotics. Since I also deal with a rare kidney disease [not related to the myeloma] my oncologist decided we would go very slow in treatment in order to not stress the kidneys any more than necessary. What dose do you take for the Revlimid, if I may ask?

Neuropathy is the pits, isn't it? I have it in my left foot, mostly just numb, same as you! It's hard to remember to step out with my right foot, since it is way too easy to lose my balance with a numb foot! Do you have that problem, too?

How long have you been in treatment? How were you diagnosed?
Ginger

Prior to diagnosis, I became increasingly fatigued for the last 12-15 months. I had also been sick more and more, for the year prior. I thought it was my age, (54), and working night shift for 9 years at a stressful job, with 12 hour shifts. In January, 2019, I had an upper respiratory infection and sinusitis. I developed left posterior rib pain, which I contributed to coughing. I seemed to never get over my illness. One seemed to bleed into the next one. One co-worker had even commented "Lisa, you are always sick". I had laughed, and told her I was just getting old.
In February, and March, 2019, I began some long overdue dental work. This included some deep cleaning-descaling of upper and lower teeth. The day after I had had this done on upper teeth, I had a rapid onset, severe head cold. This quickly developed into new onset asthma as well. Later that week, I finally went to my PCP. They ordered a chest x-ray, but no Labs, as I did not have any fever. The chest x-ray was abnormal, and suggested a chest CT. I was treated aggressively for the asthma and respiratory infection. 12 days later I had a chest CT. My lungs had cleared up from treatment, but they saw multiple lytic lesions on my thoracic and lumbar spine, suggestive of MM.
Thus, I had multiple lab work done, and was referred to a hematologist. I got my official MM diagnosis on June 20, 2019. My PCP was confounded, because my initial labs did not look that bad. My BMB, in June showed 40% MM. Skeletal study and PET, showed multiple, active lytic lesions throughout my skeleton, including my skull, spine, pelvis, hip, upper legs, and upper arms. My Transplant Hemotologist, at Mayo, agreed that I had had MM for a while, due to my heavy bone involvement. MM is not a cancer that is routinely screened for. 28 years ago, as a nursing student, my Med Surge text book had one big paragraph in it, about MM. Fatigue, in reased illnesses, and occasional sporatic pain in back, hip, ankle, were the only symptoms I had. I am a nurse, so I really though it was age, being post menopausal, working night shift, and just part of getting older.

Hi Lisa I also have MM now almost 2 years. I have neuropathy in my feet no pain just numb. drives me crazy. Since no pain not much to do about it, oh well I don't feel too bad I'm on Revlimid only. Hope your doing well!! Angie

Hi Larry, I too have MM now almost 2 years. Angie

Member Spotlights feature interviews with fellow Mayo Clinic Connect members. It's an opportunity to learn more about members you’ve connected with and some you haven’t met yet.

I know many of you in the multiple myeloma discussions have exchanged posts with auntieoakley, so I thought you'd like to see today's featured Spotlight:
– I shall pass this way but once: Meet @auntieoakley https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/i-shall-pass-this-way-but-once-meet-auntieoakley/

Nominate a member to be featured. See more Member Spotlights here https://connect.mayoclinic.org/blog/about-connect/tab/newsfeed/

There are many tools in the box to treat MM, i think you can plan for some quality as well as quantity. The IMF has a whole section of great information for the newly diagnosed, I will post a link. Are you in an area with a large medical center? Have you looked up the IMF?
https://www.myeloma.org/multiple-myeloma/multiple-myeloma-diagnosis

Chris ………… i dont have any of mine since i am new at MM but just anxiety………thanks. thanks for sharing your husbands story. will surely do as i progress. I hear there is no known cure for MM presently but prepare to live a good life.

I absolutely loved the conversation about do we fight this thing or do the bucket list? My husband shouted out from behind me, “BOTH”.
I love your story. Thank you for sharing it. We had the honor of meeting Mike Katz at one of the myeloma seminars by the International myeloma foundation, he was a 26 or 27 years at that time. That really created a lot of hope for us at that time when we were not really given any here locally. Then we went to Mayo and found our amazing oncologist just 150 miles away. Now he is only about 70 miles. We are truly blessed.

https://youtu.be/jMy1H6m-Lk0 This 30 minute video interview gives key aspects of my 29+ myeloma survival.

@mountain009 , this page is has a lot of survivors. I will tell you, my husband was diagnosed with advanced disease in 2010, and still has a decent quality of life. Are you comfortable sharing some of your story here?