My Myeloma Story by: Dhiru Patel
The following was written and provided by myeloma patient Dhiru Patel
In 2015, I developed back pain and cracks in my spine. I told my doctor that my red blood cells were going down and out of range. He said I was anemic and failed to further evaluate my condition. I kept complaining, so he sent me to physical therapy a few times. I developed shortness of breath so he referred me to cardiology and recommended an angiogram. After a lot of blood tests, they found my lambda free light chain values were at 1200mg/L. Finally, Cardiology referred me to Oncology to further evaluate.
On September 17, 2016, I was diagnosed with Multiple Myeloma (R-ISS II) with Lambda light chain values of 1250mg/L; bone marrow 90% to 95%, and FISH showed hyperdiploidy and standard risk disease.
My treatment plan started in September 2016 at Kaiser Permanente. I was treated with Velcade, Revlimid, and Dexamethasone for 5 months before I went on remission. In November 2016, I had a Stanford doctor review my myeloma treatment plan from Kaiser Permanente. He approved it and I continued with my treatment.
During the first month of treatment, I developed another crack in my spine and I had difficulty getting out of bed so I had to buy an adjustable bed. It still helps me a lot. My doctor put me on Zometa for a few months to help me with my spine. The pain and the rash went away in 6 months. So an important lesson is to acquire as much knowledge on myeloma treatment so you and the doctor stay on top of managing myeloma.
Most of the time after my remission I felt fine thanks to my doctor and my spouse's support during treatment.
I did go to a 24-hour fitness club until COVID came our way. I hope I can go back again to exercise with friends and enjoy swimming, the sauna, and the steam room.
Currently, my Lambda has been going up from 24 to 700 mg/L for the last 8 months. I found that in Light Chain Myeloma, the M-spike does not seem to appear, so light chain numbers are critical. Also, my doctor took a PT scan and he did not find any bone problems. I never had an MRD test but I am hoping that after completing my relapse treatment he does an MRD test.
Initially, my doctor was talking about using Darazalex but he changed his mind because the initial treatment worked so well. He only changed Revlimid (it caused a lot of rash and itching) to Pomalyst and reserved new drugs for future relapses. My treatment of Velcade, Pomalyst and dexamethasone started on August 10, 2021. Let us hope for the best.
From my experience, I recommend the following:
- Get a second opinion from a myeloma specialist, even if it's only to approve your current treatment plan
- It's important to monitor your light chains, as I mentioned, M spike doesn't always show but it doesn't mean there is no myeloma
- Get an adjustable bed or any other thing you need to get a good and comfortable quality of life
- Learn as much as you can about myeloma, it will help you make better treatment choices with your doctor
- Staying healthy and fit is very important when dealing with myeloma
- Find support from your loved ones
I pray for everyone with multiple myeloma to get well and to find the light at the end of the tunnel.