Does this mean I am no longer in remission? These results were not available at the last doctor visit and I have not been able to get a response from my team at COH regarding this result. I have been having a lot of anxiety over this result and would really like to know if this is expected or does it mean I am no longer in remission from SCT last March.
Yes it is!
Hi Kristine, stay positive. One abnormal result does really tell them anything. I totally understand. I would be freaking out, too. I'm glad you already have the bone marrow biopsy scheduled. Thankfully, there are many drug combinations they can try. Revlimid stopped working for me early on. I have been on Pomalyst and Darzalex with a great response. Biclonal sounds so scary, but it's my understanding it's treated like other types of myeloma. Big hugs your way 🤗 ❤️
Thank you Mark. I am on a maintenance of Revlimd still and have a bone marrow biopsy scheduled later this month, 19th. Hopefully all will be good. In the meantime, I will think positive that this is normal and won't progress. The waiting game is horrible, but we are strong and will get through this too. 🙏
Kristine, I am sorry to hear that your are getting some abnormal results from your SPEP tests after your SCT. First, I did relapse about 10 months after my SCT and yes I freaked out when I saw the M-spike numbers start to climb. I was also getting frustrated when my oncologist said to keep waiting after every months results and it continued to climb. After about 5-6 months he finally agreed that I probably relapsed and the only way to confirm it was another bone marrow biopsy.
So I got that done and my plasma percentage doubled from my initial diagnosis. Now I was really freaking out. I consulted with 3 oncologist in May 2024 and they all agreed that Car-T was the next treatment line (note the date... May 2024).
So in May 2024 I started what they called bridge therapy to get my numbers down before Car-T. Empliciti and Pomalyst. In 2 cycles/months, my numbers were down to near remission. It was the Pomalyst I was responding well to. I know this because I have had to take a cycle off 2 times and saw my numbers increase. Around Nov 2024 my oncologist and myself agreed to continue with the Pomalyst and not move on to Car-T. The reason is that he is now replacing Car-T with a new treatment called Bispecific Antibodies. Now it is Mar 2025 and my oncologist performs this treatment outpatient in the infusion center and getting good response and no bad reactions.
The reason why I focus on the dates is because the treatment options are getting better almost every month.
Lastly, I agree it is odd that they are saying you have biclonal paraproteins in your M-spike results. The type of paraprotein and the region (beta & gamma) is typically an analysis and comment from a doctor who analyzed the sample. And I suspect like me you will continued to be blood tested every month to see what these paraproteins are doing. You should also Google "biclonal paraprotein" to see the causes of biclonal. its very interesting.
Here is something I learned from relapse. Yes, the relapse can start in Oct 2023 and left untreated until May 2024 and the biopsy shows a significant increase in plasma cells. But it did not kill me or even lead to any new issues like new bone lesions, infections or kidney issues. I have taken a cycle off from Pomalyst (my oncologist calls it a treatment vacation) because of low WBC and it has not caused any problems. It is completely natural to get anxiety when you see abnormal test results and speculate about the worst outcome. But you just never know. I have heard of people having increases in their MM numbers and then a few months later they just go back down.
I wish you good luck and hope that this is just an anomaly.
Mark
While it's understandable to feel anxious about seeing M-spike results, the presence of monoclonal proteins alone doesn't automatically mean you're no longer in remission. Remission status is determined by looking at multiple factors together, not just a single test result.
Your healthcare team will need to compare these Show Full Answer