Connect
Comment receiving replies
Hello. I am new to SMM since march 25 and have my first follow up appointment with the doctor next week. MRI marrow scan was negative thankfully. I am having increased burning neuropathy in both hands and some thing new that feels like a very low level deep ache throughout my body. As though my bones were swollen. And I am extremely fatigued. I have been offered a clinical trial for Linvoseltamab to begin treatment. The MGUS is now “significant”. Smoldering is a strange word and I can’t help but imagine I am slowly falling deeper into this new kind of hell. I have so much and so many supporting me. Great doctors. Loving family and friends. Getting educated and maintaining balance is super challenging. I did have a great conversation yesterday with someone at MMRF about beginning treatment so early. It is really helpful to read all of these threads. I remember the years I had MGUS and sure wish I was still there and I remember one thought I had. Enjoy this while it lasts. Just in case it does progress. I can tell my self the same thing now. Enjoy this while it lasts. Just in case things change.
Replies to "Hello. I am new to SMM since march 25 and have my first follow up appointment..."
I’m an 84 yr old widow & just been diagnosed with MGUS ~ I’m in process of trying to “educate” myself & understand this diagnosis & all that’s involved.
I cannot say I have many supporting me as I have not shared this with any of my children or other family members~ my reasoning may be incorrect but at this point I feel like all they’ll do is think of all the bad ~ just automatically think cancer, which I know is not now!
I’m compiling a list of questions for the hematologist/oncologist & try to understand the test results he has ordered.
I look forward to being able to share & learn from others.
Connect
Hi again, so I have the results from my recent labs and while numbers continue to increase or decrease in the wrong direction I am still Smoldering. I am currently waiting for a clinical trial to begin at Dana Farber for a bispecific treatment. I have continued to educate myself and have found this thread to be really helpful and the other threads that folks have here on Mayo connect. I now know a couple of people who are in treatment with very short notice, and have heard other people talk about receiving an active Multiple Myeloma diagnosis out of the blue and I am reminding myself that my situation is very different, I have this time now to pay attention to, I am not active, I am not in treatment, I am closely monitored, by skilled doctors, and practitioners. And if things change I will be prepared.